Lew dealing with life with progressive MS

It's been awhile

2011-09-10T08:13:00.000-07:00

I have not blogged for quite a while. It seemed like I was going to explode if I didn't there when I just got started, but alas some of that drive has gone by the wayside as I try to get everything done in a day that I need to get done with a finite, and dwindling, amount of energy. C'est la vie. So now I don't focus constantly on whether or not my CCSVI procedure 'worked' or not. It's just realizing that while it may have helped a great deal, it didn't have the dramatic effect that it had on some. With almost 100% certainty, I can say that's because I'm a progressive case. The increase in some function I got was probably due to the fact that I was right there in the transition from relapsing to progressive when I had it done. Enough about that, it simply is what it is.

There are a couple of things I'm wrestling with right now. One is coming to the logical conclusion of where progression eventually leads you. Not just dealing with the nuts and bolts of having to adapt, but adapting to a mental state where I know what's coming, but not being interested in the slightest in dwelling on it. To coin a phrase I've used a lot in dealing with the mental strain of it, it serves no purpose. The other is trying to figure out what I'm going to attempt to do to try and be satisfied and content with the hand I've been dealt. That's a tricky fucker right there. I still, absolutely, like and want all the things I used to like in the past that gave me pleasure and satisfaction. It's just that I can hardly eek out any of them anymore. Was that because I lived too far in the physical world? I don't' think so even though I focused on that alot; it fed my soul the way reading does some people I guess. I think it's because our bodies and minds are one and when one is compromised, it profoundly affects the other. There's no question about the validity of that statement, but sometimes it sure seems like there's a separation, even if that's just a construct of academia. Well since you can't have one without the other in a living being, I just have to accept that you can't have a fully charged, unaffected by the physical, mental life when dealing with something like this. It just doesn't work that way.

So in dealing with number one, I've been getting fatigued badly before the day is done. Boo hoo I know when compared to many of my contemporaries that have crippling fatigue by 10am. But it is new to me. Not working has allowed me to be somewhat functional in terms of being a domestic engineer. I could get things like the laundry done during the day and cook dinner when my wife gets home from work. Granted those two things sometimes took all day to accomplish, but now I can hardly eat with out being nauseously dizzy after I cook. Or I can't clean the kitchen up and have to leave it for the morning. These are almost laughable to be upset about as I write them. But you have to understand it wasn't that long ago I was working 10 hours and then coming home and cooking dinner and interacting with the fam and all that and going to bed around 10:30. It just freakin' hurts so bad now I can't even physically get some things done as my legs just won't go another step. So what I talked about in the opening is the conclusion you come to when you think about it. I'm talking about becoming non ambulatory. Yes I am still on my feet and I still can do short trips to the store, go to the movies and things like that and for that I am VERY grateful considering I've had MS for 10 years now. But when you think where you were 5 years ago, where you are now, and what it will more than likely be like if I progress the next 5 like I have the last 5, that's when you can get scared.

No one wants to go into a wheelchair. And I'm really not scared of just that anymore. I used to be, but as I always say, the only 'good' thing about this disease is that it usually gives you plenty of time to prepare for stuff like that to happen; at least in my case. It's all the other shit that comes with it. We have regular cars. We have a regular house that's on the smallish side. We don't live in a plat with a flat yard. We don't have stair lifts. I still 100% take care of myself. All that shit will change, as some are all too aware, when you sit down for good. So all of the sudden you start to worry about money and all of that. But it really does screw up what good might happen today if you dwell on what may come. You see I really don't know if that's the inevitable conclusion of this. I've heard that over time MS can slow down. So maybe I will stay on my feet. I sure as hell won't be able to do many trips up and down the stairs if much more happens, but you stay upright as long as you can to be sure. So I'm reaching the same conclusion I ALWAYS reach in terms of progression. You just have to live one day at a time. Cliche I know but it's a cliche for a reason. And I'm am capable of living that way; MS has surely taught me that. But our fail safe motto is "prepare for the worst and hope for the best". Those are truly words to live by but I don't even want to prepare for that! But I have to and I have to find out what my options are if it happens. Not to dwell on, but just so it becomes an intellectual issue I'm prepared for if it happens and not an emotional one.

So, yes, my inevitable conclusion is that I am losing function in terms of endurance, energy and leg strength and may end up in a wheelchair. Those nerves just aren't firing fully and that's what it takes to keep your muscle mass up. No two ways about it really. When your legs have had enough by about noon, you know things are happening. But it is different than before when you'd have an attack and lose a bunch of function in a hurry. This is soooo different. Just a slow descent and you actually wax and wane and lose strength and build some back. But those are really games I play with myself. I get lazy in my exercise regimen and then get back into it and have a small bounce in function. Those are good things and even though the net effect is still loss, living a day at a time allows you to feel victorious even though it's just a head game. It is SO hard to stay motivated to exercise when you have to do it way past the point of pain just to get any benefit. And this is from a guy that would run on Xmas day in a blizzard when I was healthy. But throw in lots of pain and it's different. But I won't give up. It's hard to fight when you know you're not going to win. There's no getting past MS, there's no 'over it', there's no winning. At least not once you start to progress progressively :-). So the motivation that most sick people use, getting better and getting back to what you were, does not apply here. You have to really want to enjoy the diminished function that you are capable of having to even do it I suppose. It's a strange, unique dynamic and I've often verbalized it on here. I think I refer to it as 'exercising so things suck less'. Hard to stay motivated with that mind set year after year after year.

On to the tough one I'm dealing with. Not just what to do with yourself, but what life has to offer in terms of creating a new life for myself in this condition. The hard thing is that I still want and desire everything I always have. But, to be frank, most of that is out of reach. And it's not just the sports and that type of stuff. I mean yes I'm aging, but those who know me know that I was the middle aged guy that could 'hang with the young punks' in all things physical and even show them up. I've literally always been in great shape and would wake board all day long even when I was 5 years into this all and would stop only when I had to pee! But that really doesn't matter and only makes it harder to get over. I've always talked about the dangers of lamenting the past, but that's not where I'm at right now. I need to figure out what in life is going to interest me enough to where I WANT to get up in the morning and get started on it. Writing comes to mind, but shit, I just don't know how to get started. My friend in Washington, Mark who has already sat down, cooks and I simply love looking on Facebook at what he is going to make for dinner! He seems to really enjoy it and I suppose I could start that as a hobby. But really it just hurts to stand long enough to actually do some really cooking. I guess I'll have to use my Dr. stool and scoot around the kitchen.

I don't know, this post seems to have fizzled out as I'm writing it in terms of how much of my thoughts it has taken over. It sure feels a lot more 'grand' than it's coming across. But it is important, if you don't want to fall into the depression trap, to find something that trips your trigger. It just doesn't cut it just reading and watching TV and turning mushy. I don't hardly even turn the TV on during the day unless there is some good sport on. You'd think it would be easy to get over things you want to do that you can't anymore. It's kind of simple, you can't do it so get over it! But it's hard as the shows you watch, the people you're with, all do the things you want to do so since it's not an option to just check out of life, you just have to find your thing. So it sounds like I'm going to try cooking on for size. I've been learning, but not refining the craft whatsoever!

So the purpose of this blog remains the same. It allows me to verbalize what I internalize. It gets it out and shines a light on it and thus (in my mind anyway!) must be put into action. That's the approach anyone who deals with anything should try on for size. You can go to therapy all day long. You can psychoanalyze with a therapist until you're blue in the face. But until everyone knows about it and gets used to it (whatever it is) or doesn't, it's still there. I've come to the conclusion that, once again in my case anyway, I can't get over it until it's out in the open. Therapists are great for throwing you a lifeline I think, but to me, there's no substitute for just getting it out, hashing it out amongst friends and laughing about it later. That oh so socially profound movie Crocodile Dundee had a great line in it that says what I'm trying to say best. When trying to be sensitive to someone dealing with an issue the girl tells him she's seeing a shrink. He responds by saying "I didn't know she was nuts" to which his love interest in the movie explains how she's just working through some issues, to which he replies "hasn't she got any mates?". That's what it's like for me. If you're ashamed of a problem and you feel like you can only tell your therapist, it's still in the closet. You tell your friends and you've opened up. When it's still a secret, it's still a secret. And secrets are sources of shame if you dare not speak of them. But when you shine a light on them it usually turns out that most people thought it was no big deal anyway. And if they're appalled at whatever it was and simply can't be your friend anymore? Well then that's really how it should be since you don't want your friendship to be so fragile that if they knew this one thing about you they'd abandon you. So Lew's school of therapy says shine a light on the issue and it will either go away or diminish; it can't hurt you anymore once everyone knows!

Since I feel like I'm rambling, I'm going to close this post off. In the never ending pursuit of happiness that I'm on, I found a quote from that socially relevant giant, Charlie Chaplin. "To truly laugh, you must be able to take your pain and play with it". In other words, we all need to do a little bit of getting over ourselves.

New title and direction

2011-06-23T10:28:00.000-07:00

As you can tell from the non-bloviated, new title, things are changing up in here. One thing that is happening is that I am not able to read like I used to be able to. Why is that you ask? Well it's because as soon as I start to get into a paragraph or sentence, something pops in my head that I just need to capture. A fungent thought, a quote, just about anything. I suppose, it's highly likely given my hyper nature that it could be ADD, but I never suffered from that before. No sports fans, I think it's because I'm becoming a writer! Hoo dee hoo! It's hard for me to say that in that fashion. I don't want to come off haughty or 'better than you' type of thing. Our society, at least the one I grew up in, rewards humility in a big way. So I've always been careful to not portray myself as thinking too much of myself. And writing down my own thoughts for others to read, in my mind, comes off a bit egomaniacal; like what makes me think people give a shit what I have to say? However, I think I'm wrong about that. Are all writers egomaniacs? I suppose it could be true, but I doubt it. So now the urge to write has become a distracting force that keeps me from enjoying my reading, and that pisses me off. So here I am.

Why the sudden uncontrollableness of it all (I'm now a writer so I'm allowed to make up words)? I've no idea except maybe being retired allows me to pontificate on life whereas my entire thought processes before were about work. And believe me, I wrote PLENTY at work, just ask anyone that used to work with me. That's pretty fucking stupid when you think about it once you really think about your one life you have to live and what it ultimately 'means'. But that's how I lived it and I was very successful professionally, so I'm going to do the same here. Maybe it won't manifest itself financially, but I'll feel good about it and that makes it a successful venture!

So I'm trying to read the autobiography of Mark Twain, who should really be everyone's literary idol if you ask me, and I can't get the monkeys out of my head. He was probably the man I'd most like to have been able to spend time with. Never have anyone's quotes affected me like his and I think we are somewhat like minded. He didn't allow (whatever that means) his biography to be published until 100 years post mortem so he could tell it like it is and speak his "whole frank mind". So even the famously politically incorrect Samuel Clemens worried about political correctness to a point. But I think I will differ from that. I am really at the point where I don't much care if what I say pisses off this group or that. In this politically polarized time we live in, simply opening your mouth is enough to piss off this group or that. It's crazy and I hate it. We used to be a country of equal opportunity offenders. I mean no ones' ethnicity, handicap, whatever, was off limits and we all made fun of everything leaving no one offended save the weak minded or very sensitive. And didn't that used to be the whole purpose of teasing those who couldn't stand it? To make them 'toughen up'? Now we don't dare offend anyone because the thin skinned are now making policy. Someone please give me a big, fat, fargin' break. We've lost a LOT of great thought in order to not offend. And since when did the 1% dictate how it was going to be for the rest of us? It's happening now.

I mean I listen to teachers talk about all the mainstreaming that is now mandatory in our schools. I'm for everyone feeling 'normal', hell I deal with that shit every day being handicapped. But to force a child into a classroom that totally disrupts class constantly, due to whatever issue they may have, can be so detrimental to everyone else. Let's say I'm a teacher in a class of 30. I have 4 students that MUST be mainstreamed from the lame, ass No Child Left Behind act. So one of the students is an absolute constant disruption. So now that 3% of that population makes it impossible for the other 97% to learn because the poor teacher has to spend all their time with that one student since the aid doesn't work there anymore due to budget cuts. I ask one simple question; what is wrong with giving that child the focused attention he obviously needs? Where I come from, we call that the tail wagging the dog. To me it is more important, in the setting of school mind you, for learning to be paramount and political correctness be whatever the opposite of paramount is. So let's make 29 children NOT learn so we can satisfy EVERYBODY. Guess what? That's not how the world works. More benefit for all involved in that made up scenario would be gained by focusing on the special needs child in a special needs setting; not jamming him in with everyone else; and who says he even wants that? Newsflash-people are different. I mean if a childs' tourettes is so bad that they scream the whole time they are awake (I saw an example of this on discovery), the NCLB act says 'mainstream 'em'. Who does that really serve? Certainly not the child with the issue, and certainly not the rest of the class. Who does that leave? No one. So it serves not one, single person in that group, but it makes someone in Washington feel better about themselves.

Political ideology in this country is so screwed up it's not even funny. To listen to the news, you are either liberal or conservative. Guess what? In terms of idealogues, that's about .1% of the general population. So who do you go with? I don't believe in charging on a credit card whose limit has been exceeded a thousand fold. I guess that makes me a conservative. But I also believe in a woman's right to choose and I also believe being gay is not a lifestyle choice. I guess that makes me a liberal. Like most of us, I'm neither. Are you telling me I have to be a religious zealot to want to control spending? (disclaimer: Bush started the shopping spree and Obama put a turbo charger on it, so they're both dicks in my eyes so don't think I'm in either corner). I'm a fiscally conservative social liberal. I mean are gays getting married really going to affect me and my family? Do any of you honestly think that people CHOOSE to be gay? I mean what 12 year old kid says "I'm going to make the lifestyle choice that makes me get the shit kicked out of me on a regular basis"? Because face it, kids are NOT politically correct and most of them still make fun of gay kids; it is what it is and I'm just bringing it up. Another newsflash; bullying will always be there. It used to be the parents job to deal with it; it was a teaching moment. The government solving bullying? Really?

BUT, I really, really don't think we should fire up the dollar bill printing presses. So why in the hell do I have to choose between two political parties that have diametricallly opposed ideals? Because we've put extremists of both parties in office that's why. And consequently, common sense has gone out the window. Just for a day, retire like me and watch C-Span for a couple of hours. It will make you want to throw up in your mouth to watch these guys who supposedly represent us go at it. You wonder where they are coming from since neither one of them can say what's really on their mind. I think that's why so many of us are so disgruntled with all of them. I mean really, can you listen to Nancy Pelosi wax eloquent and not think she is nuts? And on the same note, try listening to Mitch McConnel; same thing. And the shame of it all is that they are both smart as whips. But peek behind the curtain at their business dealings (you know the ones that make our "peoples' representatives" gozillionnaires just like US?) and you see that they are both complete hypocrites.

And then there's the press. Please. There were literally teams of people pouring over crazy ass mama grizzlie's emails that were released in the last few days or weeks. They even recruited 'citizen journalists' to read them all. Where was THAT shit when the health care bill came along? Were there dozens of them pouring over that to tell us what it was about? No. Did they recruit readers to read that monster so we'd really know what it was all about? No. But the day Palin's emails go public, it was on! And the sad thing is, the health care bill was about 10% of the content that her 25,000 emails were; pathetic. Who gives a damn about what miss irrelevant was writing two years ago anyway? How did it come to this? The bottom line for me is this: neither political partys' ideals fit up with the vast majority of us. Maybe their published ideals meet what we want, but their actions are really the only thing that matter and they just want the headlines to look good, I don't feel like they are really interested in exacting the change that their constituents actually desire.

So my political screed for the day is out of the way. I thought it important, if you are going to read this of course, if you know where I'm coming from. Just like most people, I think we should throw all of the bums out. I mean really, as a percentage of the congress and Senate, they have, wait for it, a 1500% higher rate of being under active investigation. Narcissism has its' pitfalls and most of them are narcissistic to be sure.

Aside from, or because of I haven't decided, my MS I feel very much like the everyman. I'm really tired of writing about just my MS. I'm quite sure it will still be a theme to what I write, but I just don't have all that much to say and I was enjoying more writing about how I deal with it to stay engaged in life vs. analyzing my procedure and if it "worked" or not. The answer to that is this: it was the best thing I ever did for my MS bar none. Nothing gave me more functional improvement in one fell swoop than that did, but it doesn't take you back to who you want to be. For some it really seems to and I'm still jealous as hell of all of them, but as is the norm, that's not what I got! As you continue to research your MS you will think you have Lyme disease, Epstein-Barr infection, Cpn infection, diabetes, rampant herpes, and a whole myriad of other things. The bottom line is they really don't know WHAT the hell is wrong with most of us since they don't really know what MS is. How can you know what it is when you have no clue what causes it? We know what Central Nervous System lesions do, but that's easy; just wait, watch and tabulate. And to take a drug that even the Dr's say they don't know how it works, or if it works? Not this kid. Strangely enough, I feel WAY better than I did while on those stupid, ineffective drugs. It's an easy question to answer for most of us whether or not we'd even take a drug whose efficacy was unknown and whose mechanism of action is unknown. Yet millions shoot this stuff up all the time because there's no other alternative. Well guess what? If they don't know what it is, there's a real possibility there isn't a drug to do the trick. But in this society? There just has to be a pill, doesn't there? So they came up with SOMETHING we can shoot up. A show of hands please who the drug has worked for who is CERTAIN they are not just in remission? Some will raise their hands, but some need to feel like it's working. And all over the labels and in all the literature they tell you it's all ineffective against progressive types of MS, yet I'd bet well over 50% of progressive patients shoot it up anyway despite it doing nothing because of the way we have to have a drug for everything.

I have a feeling as I'm muddling through Mark Twain's auto B that I'll be writing alot. I sure hope so!

The dangers of lamenting the past

2011-05-11T09:48:00.000-07:00

Oh great, I just hit some combination of buttons with butter fingers and just erased about 5 paragraphs! Shit. Oh well, I'm retired, I'll just start over. Anyone that reads this blog knows how I'm uber diligent about trying to make sure I don't fall into any of the mental and emotional traps that having MS puts in front of you. And since writing it down is so cathartic for me, I'm going to talk about it! As some of you also know, I was the 40 something guy in REALLY good shape. I had never really let myself get out of shape since high school wrestling actually. And once I got diagnosed, I went into overdrive with it with the running and working out. So with that frame of reference comes some good energy. I was always the guy who'd do the physical task that needed to be done. If it was play with the kids while everyone else relaxed; I did it. If it was mow the lawn and work in the yard day, I'd do that to; after 6 or 7 miles of course! So BFD, what's that mean now? Well it means I still have a hard time just watching people just BE. Just standing in the sun, or walking around at an outdoor festival or whatever. It makes me jealous, and we can't have that. It serves no purpose. Actually it does, but it's not a good purpose.

So I'm sitting at mass Sunday morning and I feel that pang of envy just watching other dads messing with the kiddos in the back of church as they got ready for their first communion. Yes, I'm catholic. Me and God are cool. Me and religion on the other hand.... Suffice it so say that going to church saves me loads in tuition. I am not against it at all for sure, but I just struggle with church personally. If only there were a Native American church and school in Dayton! But I digress. I can get green with envy doing almost anything where there are people walking and not actually thinking "hey, this walking shit and me deciding when I'm done is awesome!".

So here's where I state the obvious, but like I said before, writing is so cathartic for me. No amount of lamenting and hand wringing and thinking about what I used to be able to do is going to do shit. I mean really, isn't that obvious? Well yes it is, but it doesn't keep your mind from going there. But it serves not one, single, solitary positive purpose. The only purpose is to slip you into thinking about what you can't do anymore. And since that 'anymore' is probably final with progressive MS, what freakin' good is that? Answer: no good at all. I mean if I'm going to be happy I have to be OK with where I'm at. Notice I didn't say I have to LIKE where I'm at. Pardon the french, but that would be fucking impossible. If you like MS, you are whacked. I hear those "it's the best thing that's ever happened to me, it puts my priorities in order" lines and just shake my head. Brother, you must have been pretty screwed up then. Well I wasn't. I loved my life. I was very vital and definitely squeezed life pretty hard.

But what's happening in the here and now IS my life. It's what I need to move forward from or I'm only moving backwards. It's not the life I'd choose, but I CAN'T DO ANYTHING ABOUT IT. It will require diligence, of that we can be certain. But I can't continue to look on able people with envy. It is 180 degrees opposed to me being happy now. And why can't I be happy now? The only person in control of that is me; I can be happy. But not if all I do is bemoan the past.

And in the grand scheme of things, it could be a hell of a lot worse. I can still do everything required to live a normal life. Now the definition of normal is where that gets fuzzy. But I can still walk, make my own food, clean and feed myself and I do have enough walking chops to go to the grocery for a short jaunt, or caulk four new windows (I did that yesterday :-)). No I can't go running. No I can't enter a racquetball tournament. No I can't sit out in 90 degree heat for an hour and be OK. But BFD, right? I mean the things that have been taken away are decidedly not things that are required to thrive. As a matter of fact, they probably defined me too much. I mean did it really matter that I could beat you in a foot race, or that I was ranked in racquetball in the state of Ohio? No it didn't. It sure seemed to at the time and I'd love to still be golfing and playing, but damn, I can still walk. It is so cliche to talk about getting back to 'the things that matter'. I hate that shit sometimes, but here I am in the middle of it now and I know what they are saying. It's true.

MS is a disease of almost constant re-calibration. NOT doing so is the destructive part. If you don't recalibrate from time to time with what you can do then all you are going to do is lament the past. And you read the title, right? HaHa! Seriously, I absolutely hate re-calibrating because all you're doing is resetting your frame of reference to constantly diminishing ability. But the alternative is sitting in the corner in the fetal position or taking anti-depressants. You all know I'm not that guy so I have to say good bye to Lew the wannabe athlete. I mean really, beating ass in racquetball never did make me a living, it just stroked my ego. Not that I didn't enjoy that, but it's not what makes you really happy because you lose that stuff with age too, but you never lose a good mindset. Not if you are into mental maintenance. Let's go Wings! Down 3-0 and forcing a game 7, they are GOING to win the cup damnit!

The end of my CCSVI journey...for now anyway

2011-04-15T06:17:00.000-07:00

Where to start? I don't even know since I plan on summarizing many things in this post. As most of you who read this know, I just got back from Albany Medical Center to get a venogram. It was my suspicion, based on the low percentage of patients my original Dr. treated, that my azygous vein needed some work. That's the 'spine draining' vein. I had to get a doppler ultraound on Saturday the 9th, and then a venogram and angioplasty/stenting if the venogram showed blockage/lack of flow. Well as any self respecting CCSVI follower can attest to, you WANT them to find something that needs fixing. There has also been a huge amount of people who re-stenose and who get blockages in their stents that have been placed. Well it was a butter side down in the diaper pail kind of day; no problem with flow whatsoever! The Dr. actually told me that he had never seen existing stents in that good of shape in terms of free flow. Maybe it's the bigger stents I have, or maybe it's because of how much water I drink that has kept them so wide open and clear all this time. Well my azygous, which had never been ballooned or stented, was also 'just as he'd like to see it in a healthy person' is how he put it. So what now? Well it's back to life of just taking care of myself the best I can and eating right and exercising the most that I can. Basically what I've BEEN doing. So how does this make me feel about all of this?

Not any different at all to be truthful. It's good to know that whatever problems blocked jugulars were causing me has been taken care of. So why is my left leg having MS issues? Well there's obviously more to the MS story, especially for us progressive patients. I can vividly remember reading at the very beginning of my trek down this road that progressive patients at 18 months out pretty much didn't feel any different. I can't say that totally as I did experience some significant improvements after the procedure in June of '09. I STILL don't use my cane at all, and I've still not needed it. But there are no more improvements and my left leg has had MS progression over the last year. However, it is very, very slow (which is good) and to be honest nothing else has progressed since the initial procedure. That's ginormous as you all know that we all went in to this just hoping to stop progression. It is my feeling that the 'up from the chair' stories we all read about are exclusively Relapsing and Remitting MS patients. I mean progressive MS is not an inflammatory disease process anymore, so why would it peel back symptoms? The correct answer is that it wouldn't. CCSVI cannot undo nerve damage. Maybe nerve inflammation, but not actual nerve damage. C'mon stem cell therapy!

So I've had a 'clean running' CNS for about two years now and I've not gotten worse except in the area of my left leg. Could that be progression since the procedure? Obviously it is despite a 'flowing like a river' cerebro drainage system. I suppose there is a chance that this was started before my initial procedure and it's playing out, but I don't actually believe that. If it slows down and stops, then maybe I'll entertain that theory, but not until that happens. So once again we progressives are left holding the shit stick. Bt the results the RRMS community is having are still just great. I mean if this proves out and is picked up early, we could keep people from ever getting to the progressive stage. That is the secondary progressive stage. Those who are progressive from the start (Primary Progressive MS) are most likely still in the place they've been forever with no good treatment at the present time. There are things like immune ablation (rebooting your immune system with high dose chemo) that have had results for all MS'rs, but that's still not a tried and true method either. So despite a completely clean bill of health from the flow doctors, I am still about a 5 on the EDSS (Expanded Disability Severity Scale). Basically that says I still get around, but there are significant things wrong with functional systems and the like. I'm not bitter, pissed or any of the above. After ten years of this shite, you get a pretty high fallutin' 'hope for the best but prepare for the worst' mindset. But I think I did get the best in terms of having this procedure done. I mean the whole concept of CCSVI is cerebral venous insufficiency, and I obviously do NOT have that anymore. So I really had no expectations of 'getting better'. I've written on that extensively using my flooded drywall analogy. The waters have receded and I'm in need of a good drywall guy! Once again, c'mon stem cells or whatever is eventually developed to repair nerves.

So to me I got relief initially from those things that impeded blood flow was causing. I did not get relief from my big MS symptoms. So is this all about MS? Hell, I don't know. It's not about MY MS. It gave me relief, of that there is no doubt. But even though I'd have liked to seen blockage so that I could say "that's why my left leg is progressing!" alas I cannot. There is a HUGE movement out there that is just convinced that this is it; no doubt the debate is over. No matter how hard we want that to be true, it is not. There is much more to discover to correlate MS disability and CCSVI. There is a chance that it's not even really the same thing. But then again there's a possibility that RRMS and progressive MS is not the same thing.

So going forward, I'll not be blogging about CCSVI at all unless there is some breakthrough. I'll be blogging about how I deal with this and what I think about it all. I do know that my left leg is pretty much my only visible dysfunction; and it's not even visible all of the time; only after effort. But the whole left leg issue is NOT just that it's getting weak. I've always thought that just straight up weakness is what we should fear in terms of losing our mobility. If I were to get 'sat down' (knock on wood type lingo for needing a chair!) in the near future it would not be an issue of strength. It would be an issue of knee pain! I have a suspicion that my knee pain is due to spasticity caused by the MS because it's at it's worst when my calf is just screaming from that. I think it's probably pulling my knee joint apart and causing it to bang together with every step. So I'm going to an orthopedist to get another MRI. My left knee has been screwed up from sports my whole life and it also feels like that since it now hurts pretty bad when I'm just at rest. So we'll see. I can exercise, but I always hit a wall of knee pain way before I've given myself a workout of any significance. I also still get all dizzy when I exert myself so that quashes it too. So it's back to looking at stationary objects while shaking my head from side to side and shit like that to combat dizziness. Not fun, but what you gonnna do? As always I have my chin up and will enjoy my life. It's not the life I'd choose for myself since I was always such and uber busy person. But I'm getting used to it, as is my family, and I had a great day yesterday of training the dog, working in the yard; strenuous things like picking up sticks and other high effort work! I accepted the fact that I have this shit long ago. I won't let it have my spirit. That is not something that MS takes UNLESS YOU LET IT. That is important to keep in mind. No matter how bad we have it, it could be worse. We all need to remember that every day. Be grateful for what you have on a daily basis. I can walk. I can laugh. I can love. I can be an example for my daughter. Now what is it that leaves us in the dumps, incapable of enjoying our lives? Oh, that's right, ourselves! So look at your damn self in the mirror this morning. Then think about your kids, the sunshine outside, your spouse. Then ask yourself if a strong bench press or running ability will help you deal in those things any better than you can now. Things suck all over and things are beautiful all over. Let's concentrate on the beautiful things and screw the things that suck. No time for that shit anymore.

By the way, google blogger needs to jump up and bite my ass. I've went through here and had to reput my paragraph breaks in like 4 times. So I hit preview after literally hitting the return button 6 times between paragraphs and it still wipes them out. So this is probably going to look like one big, huge paragraph. No reason for i all all and I'm sorry it it's tedious to read. Whatever is doing it has done pissed me off and I'm not fixing it again! OK I couldn't live with that, hopefully they're in there now.

If you want to learn about CCSVI procedures....

2011-03-14T13:09:00.000-07:00

Go here! This is an event in Chicago that some of my friends have set up and it will be very informative, but they need RSVP's soon so they know how many folks are coming!

http://events.r20.constantcontact.com/register/event?oeidk=a07e3hqxrla3e458582&llr=pflw7ieab

So get off your butts and register!

Going back for Round 3

2011-03-02T09:05:00.000-08:00

Well it's been a while since I updated on here. Things got busy for me personally for a while and I really didn't have much to talk about since I've been distracted. Getting the new puppy has been a blast and sobering all at the same time. She's adorable and a good girl (with lots of energy) but she is hard to run around after when you can't run! At any rate, I'm spending a little coin to have her trained pretty hard core since I just can't kneel down and take that much focused time to spend with her.

Well as lots of you know, I retired. I was major league stressed about getting approved for disability also. I had actually been told it may take up to 18 months to get my first REJECTION! Well I got approved in only 3 months! I guess it's because there really wasn't any question that it was time. I pushed it past the point of sense to retirement that's for sure. But at any rate that is major stress off my mind since I went from full salary to nothing the day I retired. So the amount of boxes I have to check before I relax is becoming smaller and smaller. That's a good thing! Plus baseball is getting ready to start and since I feel 70 years old anyway, I may as well act the part and listen to the transistor radio all damn day. I do love listening to the Cincinnati Reds on the radio. It's good stuff.

So now what? As most of you also know, I am getting weaker and weaker in my left leg. So much so that it's starting to not want to work by, oh, 10:00am! I mean I can get around, but I do one thing and it's take a protracted rest before I can do much else. Thus the sobering part of raising the puppy. But it's worth it, we are fast becoming inseparable. She is such a little lover. She sleeps a lot and won't sleep unless she's in the same room as me; usually with her head rested on my feet or something. I'm really bonding with this dog and it's all due to how awesome my last dog was. She taught me what pets are really about. Too bad I had to learn to be patient and understanding ON her, but she didn't mind, she was the best. I'm fast becoming that weird person who talks about their damn dog all the time. I guess there could be worse things! I'm just home all day long with her and she really is becoming very important to me.

So what's the title of this post all about? Well as readers of this blog know, I have it in the back of my mind that we missed what I think to be is the main culprit of what's going on; my azygous vein that drains off my spine. I just didn't feel like I could leave this effort feeling like we may have overlooked something. Not really overlooked, but didn't know what was what yet. The guy who did me just didn't 'find' nearly the percentage of dysfunction in patient's azygous veins as 'other guys' who will be doing mine have. Not even close.

And since my disability comes from things going on in my spine, I'd just have felt like we'd have left too many cards on the table. So as I was in the middle of writing this post, I got scheduled in to have this done! Hootie Hoo! I feel weird about this one though. I'm not nearly as hopeful that this is going to fix what ails me since the first round really didn't. Well I improved, but I'm back to going downhill slowly but surely, at least in my legs. And that's getting tough. I just don't have enough strength to get through the day anymore without significant amounts of downtime. I'm still walking, just not far at all now. I used to say, just not very far. Well this is a whole new level of that. By 10:00am, I'm ready to take a 2 hour nap to recharge my leg batteries. It sucks, but as I've always said, I have MS, this is what happens when you have MS. This is the disease process, so I can't go all batshit and get all let down if this next round doesn't 'cure' me.

So this next round is so I can close the book on this if you will. It always nagged at me that we didn't do anything to my azygous vein. Well we might not again. Dr. Dake may have had it all right. However, he had not seen that many patients to that point and these guys who are doing me in early April have seen well into the hundreds of cases. I may never close it all the way as there may be tuning required, but I just feel like I have to finish the race I started and I just don't feel it yet. It's possible that I'm just crazy jealous of the stories I read on Facebook about people having MAJOR improvements. And also ones you can turn on and off by restenosing and then fixing the restenoses. It was never like that with me. I never had it come on and felt like it was a discreet enough event to even notice that something was wrong that needed 'fixing'.

So I wait a month now. I just hope the progression doesn't keep up like it's been in my legs. They are truly getting weak and I wonder how many more days I have left where I still accomplish basically what I wanted to when I woke up. Granted that list has been scaled WAY back over ten years of losing function, but I got used to staying the same for so long. I started to have 'disability memory' where the level of my function was getting in tune with the level of what I wanted to do. That may not translate very well, but it's like this. You want to do X, but you only get Y done and you get all bummed out since you could do Y just a week prior. Well staying the same for so long allowed me to understand what I could do and it started to be innate if you will.

Oh well, I have to tend to Lilly Belle. I haven't had to clean up a single accident today (knock on wood) and that's pretty good for just shy of 12 weeks old! Stay tuned for results of my procedure! Hopefully my lazy butt will make one more post before then.

A New Year; let's hope it's full of hope for all of us!

2011-01-03T10:08:00.000-08:00

I will attempt to capture some of the random thoughts that go through my head as I lay in bed. I do some of my best thinking there! I used to get up and record it all for work, but my MS legs decidedly do NOT like to get out of bed unless it's a 'peemergency' until it's time to get up. Just the way it is now, so I'll attempt to talk about some of the stuff that has kept me thinking at night. Not up all night thank you very much! Since the procedure I must say that I sleep sooo much better than I used to. I also think that the LDN (low dose naltrexone) helps in that area too. I don't know how endorphins help you sleep, but as most folks with MS know, I'm not going to ask too hard and go back to sleeping like crap. The therapeutic power of a good nights' sleep can not be overstated. Sleep rocks, simple as that.

As most of you who read this know, I always try to stave off things that I know are around the corners and lurking in the shadows of our lives. Things like depression, non-specific anger at the world (the grumpy cripple syndrome!), and other things that you deal with when you're an incurable, progressive disease patient. I think the great impetus behind me wanting to be so proactive about all this is twofold. 1 - because that's the way I am, and 2 - because I'm scared to death of falling into a mental trap and you all know I've professed to be one of those people who deal with major adversity with grace. It probably comes down to the fact that I don't want to ever have to try and work my way out of a hole emotionally; I've got enough shit to deal with! So yes my idol is still Christopher Reeve. If that sum'bitch could keep a smile on his face, then damnit so can I. I mean it's not like he was Superman or anything...wait, what?

So it comes down to thinking about my home. There have been many times in the past, and I'm sure it's this way for most people, where you attach a feeling, or emotional mindset, to a location. You had a great trip to Florida, you love the shit out of Florida. You had a crap trip to Gatlinburg, you hate Gatlinburg. Even though places themselves don't emote, I think we attach a mood or mindset to a place based on the energy we give it while we are 'in it'. So basically I'm scared to death of attaching a negative mindset to my home since this is where my MS in its' entirety has played out. That would really suck if I had that attachment to my house. I can't imagine it would be easy to stave of the depression monkeys if I had a negative feeling being in my house. Kind of like a song that reminds you of a girl you screwed up with or something like that. You never like that song again and the emotional memory of that song comes up every time you hear it. Well for starters, I'd have to look at everything that way since MS is simply my constant companion now so it's feelings 'stain' everything.

My house is my haven and I won't let it get that way. I know many people who are stuck in their house who hate it for that very reason; because they are stuck in it like an aquarium and all they can do is look out the windows and watch life happen. Not there yet, don't want to go there until/unless I have to and I have to handle that like a champ too. There was just way too much love that went into the purchase, the fixing up of, and everything that surrounds this house. Me and my wife are still very in love after all this time and my daughter was raised here and everything. I love my home. I plan on always loving it for that reason and I can't let the fact that life gave me a 2, 3, 4, 5, 7 straight ruin that; how big of a pussy would I be? I mean I have MS, that is my life now. Some lucky people sail through life with full physical health. More power to 'em, I'm jealous. However, you have to live with what you have; period. This is simply my life now. Many people choose to not accept their lot, and those are the people who just don't end up very happy. And you don't have to be sick to screw that up. I know many fully healthy, miserable people. 'If only I could get a large sum of money', 'if only I could have married her instead of her', and it goes on ad infinitum. It comes down to self perception really. And that's the rub to me.

I need to always be cognizant of 'keeping my power'. I'm still the person I was before I got MS. I'm still in here. It ends up being so hard as you get in a rut of what life has taken away from you. But it gives and takes much less and much more to lots of people every single day. That is life. We are all not the same. Would we even expect it to be that way? Some people have to deal with abuse their whole lives. Some people have to deal with sickness. Some people with success and some with failure. It's all just simply relative but keeping that in mind and in the forefront is the challenge. Since there is nothing any of us can do, right now-fingers crossed, about MS, then getting apoplectic about it isn't going to do anything but hurt ourselves. I mean the energy spent frustrated and pissed simply goes nowhere. So why expend it? So my new thing is to only expend energy on things I can do something about. Lamenting what could be is like daydreaming about winning the Power Ball. It just 'ain't gonna happen, so why not just "live"? I CAN'T make the best out of something I don't have, so I have to make the best out of what I DO have. Yes, that sucks, but compared to what? No one guaranteed that we'd all have nothing but good luck. You're kidding yourself if you think your anger at whomever for your lot in life is going to do anything but simply make you miserable.

I mean it's easy to get pissed and truthfully you do have to beat the shit out of something, inanimate please, every once in a while just to get the stress out. I recommend a tree and a ball bat; seriously. But constant lamentation of how you were screwed does nothing save screw you some more. It's ALL self imposed; our misery that is. We give it the power. It is literally nothing until we give it energy. It's simply a harder dynamic to deal with when you come from a place where you used to have your health. Much like becoming blind I imagine would be much harder to deal with than being born blind. And I think that's what it comes down to. Something was taken from us. But since it wasn't by anyone in particular, there's no one to blame and no one to sue for the damages (please don't get me started on trial lawyers). So our hand wringing and angst, while justified, is simply a waste of energy that we could have probably used to accomplish something. And what makes us feel good about ourselves? Accomplishing things. So even though I'll probably only be able to rip out one sheet of drywall per day, I AM going to get my back room remodeled. It may take a year and there will be plenty that I just simply won't be able to do, but I will be accomplishing something. And I can always walk my wife and daughter through the things I can't physically do. That's the other thing I wanted to talk about. Raising kids.

I am actually enjoying my teenage daughter. I know, I know, what? And yes she's only 15 and I know we haven't hit the 'sweet spot' of the teen aged years yet, but I am nonetheless and I know even t 15 they can be a giant pain in the ass from watching my contemporaries. However, my daughter has the chance to be 'raised right'. Partly because I think I know what right is, but also partly because she is shaping up to be one of those kids that has a handicapped parent that has her priorities straight. Raising her in parochial school makes the priority setting easier, but we all know it's at home where you do 'the most damage'. I send my daughter to a parochial school not only for the moral compass they help provide, but also because they don't have to play the politically correct thing. I abhor political correctness in all its' forms; I hate it and won't have my daughter go to a school that will expel her for bringing in a rubber tipped dart gun in recognition of their 'zero tolerance' policy. OK, I'll stop now on that. She has to do so many things for me that I hate it. But I also love the character it is building in her. My favorite Nietzche quote is about the difference in being raised in an environment where she has to do things and one where she does not. It is "God is more interested in our character than our comfort". That speaks. I have many friends who have the most difficult time asking their teens anything that makes them uncomfortable. They don't ever want them to be mad at them. What? Did our parents give two shits about whether what they were telling us made us 'like' them? No they didn't, and yet a grand majority of us still love our parents dearly. How did that happen? lol!

Newsflash: Your teen is going to 'hate' you at times whether you make them tow the line and work hard or whether you indulge them. If you call me a liar for that statement, you deserve what you get! I don't know how many of my friends are amazed that my daughter mows the lawn. I've been told many times "I wish I could get so and so to do that, how'd you do it?". The quick answer is we made her do it. And that's the truth. Take away stuff until they do it. It's not hard. How did YOUR parents make you do it? I do understand that my situation is different, but she was doing it when I was still able to. But the high level of self sufficiency and the like that she is showing is making me a very proud dad. And as/if I go down the disability scale further, the one positive is what it will teach my daughter about how to be. No, I don't think "MS is the best thing that's ever happened to me". People who say shit like that I'd like to punch. They don't have real MS yet. I'd give back every lesson that MS has 'taught' me about what I was doing right and wrong back for my health. I really liked myself before, faults and all. And I'm starting to like myself again.

Things are so different. And I think that's as big a part of it as anything. You undergo sea change like you would not if you had your health. So you do have to work on your self perception. The things you judged yourself on before no longer apply and many of the things that used to make up your self image are gone. But I do believe it's more important than ever to understand who you are now. You aren't just the 'disabled guy'. That is not how you define someone. It may be how you describe them, but it's not who they are. And if it is, that person is miserable. Re-establishing the self worth 'things' and taking power back in your relationships is so important to self worth. It would be sooo easy to just give in and relegate yourself to the sidelines. "Life is over, I'll just watch now" doesn't get it. Yes, my life of accomplishing what I set out to do at the age of 18 is over, most assuredly. Now a great deal of my focus is on doing what I can to make sure my daughter gets it right.

I can see why getting an MS diagnosis would be damn near impossible at a very young age. It is a disease that affects YOU. So at 18 all my focus WAS on me. I've often spoke of how I accomplished a great deal by the age of 40. It's not like I'm totally ok with giving so much stuff up. But I'm much more OK knowing that I've achieved professional success, loved and laughed as much as I could and lots of stuff like that. In other words my bucket list isn't a mile long; there's no burning hole in my being of something left undone. My focus now is more on others and it really feels kind of good truthfully. Is that why I have so many friends who have very strong faith that are so happy? Maybe it's because they've always lived that way? Who knows. No matter when you get that memo, it's never too late. Helping others, no matter what age you are, always feels better than being self focused.

So 2010 is hopefully the big year that I flip my eyeballs 180 degrees and look out and not in. It is now my job to try and make sure my kid gets that memo before the age of 45. The world is changing so much, but what makes one happy is still the same. It's not money, it's not stuff, it's love and relationships and helping one another out, even if it's your family. Did I learn that too late? It's never too late.

And lastly, I need some thoughts and prayers. Similar to how I asked for the same to have my jugular veins actually BE screwed up. I need the same thing for my back. About 9 months ago I had described an issue with my sciatic nerve that I thought was peripheral in nature. I thought this because I could change the degree of numbness and pain by changing sleeping positions and sitting positions; in a big way. Well the EMG said it was central and, like everything else, it just got wrote off to MS. That's a pisser about this disease. Many doctors won't take you seriously about anything else since you have MS and it can cause so much crap. Well the sharp pains and that started coming back so my GP had me get an MRI. Guess what? lateral recess tear at L5-S1. Now I have no idea what the hell that means. I hope it means that something in that area of my back is causing a pinched nerve or abraded nerve. So here's the nutjob HOPING for back surgery. Not nuts because it means it could potentially be corrected and then I could get some strength back in my left leg. If not, my left leg is going to be the biggie in compromising my mobility. I'm losing muscle tone and size and everything, so here's hoping it's something in my back that can be fixed. If not, then I'm progressing again, albeit much slower than I was before my stents. So yea, c'mon pinched nerve!

Merry Christmas everyone

2010-12-24T08:38:00.001-08:00

Well I've certainly done a crappy job of keeping this blog up. Life has most assuredly gotten in the way and I have spent lots of time 'finding myself' in my retirement. I've also got a bit lost in the holidays in that it takes lots of energy to keep the house picked up and my new job of being house person. Extra effort for having people over and the like as well as just struggling with how much, and what, I want to write about. I love to write and it is so cathartic for me that I'll never stop that's for sure. It is just a case of having other things to do and not having an abundance of excess energy. My limited energy was used for work and life. Now work is too much so it's now just life and I am simply worn out at the end of the day when I used to blog. Thank God this isn't a job keeping this up or I'd have been sacked for sure.

We also just lost our baby doggy Pooka. She was 13 years old but will always be our baby. She was literally the best dog I ever met. Even dogs that I knew that were uber trained and uber obedient. She was the kindest 'being' I've ever known and didn't have a mean bone in her body. She was our CONSTANT companion. Everywhere we went we took our Pooka. She never missed a single thing we did except for one time when we boarded her to go to Florida for a week. And when we got back the staff at the kennel were upset that she had to go. Literally everone loved that dog. We'd be camping and the dogs were supposed to be tied up. Not Pooka. She didn't know her boundaries at camping, but nevertheless she would never wander off. She just KNEW stuff. We never even trained her per se. I remember wanting to train her to sit. I had gotten some treats out to prepare to start training her. It took one treat. No shit. And she never forgot it. Shaking was something she would just do when you held your hand out. And she always came when you called her although we never, ever trained her to come. Once again, she just knew.

And my MS? Other dogs would crowd me and get too close and get their toes stepped on. Again, she just knew and gave me wide berth. She picked up on things and was so special. She slept on my daughter's bed since my daughter was 2. She didn't make a peep and would only let out a single 'woof' when someone came to the door. She was the perfect pet and became our very good friend. We miss her terribly. There will never be another Pooka but we know that, the bar she set is too high. But that also made it so we will always have a dog. She spoiled us. but some time has to pass until we think of her and don't cry but laugh about the good times instead. She was just so good people would just be amazed. They'd be around her for a little while and everyone would say "man that is a good dog".

I could carry on forever about her virtues. I've attached a picture of Pooka defined. Even when she was a puppy she was very gentle. My daughter, at two years old, was typical in that she would get her face too close, or squeeze the puppy too hard or whatever. But most puppies would scratch and bite as they were playing and little kids always get 'hurt' by puppies. Whethey they get nipped with their needle teeth when they are just playing, or jumped on and knocked over or whatever. Not Pooka. This pic says it all. She was SO gentle with Sarah. This is the day we brought her home. At 8 weeks puppies are just out of control. Pooka was just the gentlest soul I've ever known and she was simply the best. The other picture shows how patient and tolerant she was. Sarah is an only child (well her brother is 15 years older than her so it counts) and she always used Pooka when she played as her playmate when friends weren't over. Here she is carrying Sarah's arrows around. She would put capes on her, bundles of arrows, all kinds of stuff. And Pooka would just tolerate it. I'll miss her so much.

Don't mind the dates on the pictures. These are pics I took of actual photographs!

Neurorehab takes its' toll!

2010-12-01T10:29:00.000-08:00

Since I'm now over the full on analyzation of what having the 'liberation procedure' done is going to achieve, it's time to turn the page. Having the procedure done I have found is not something that keeps changing. Once the initial improvements were realized, that's pretty much it for me I'm afraid. And as I've said before, now it's on me if there will be any more improvements in the way I function and my quality of life. So enter the Kettering Neurorehab and Balance Center. Going to this type of therapy has been wonderful and heartbreaking all at the same time. Wonderful in that there are things they have me doing that actually impact my QOL positively, but heartbreaking in that doing vestibular exercises and some of the rehab puts a marker on how far my central nervous system has deteriorated. And don't kid yourself, your CNS controls everything. I mean everything. We all have our own hard drive and MS messes with that. So it really sucks when something is screwing with it. I can't just reformat it, although that approach has been tried (google - revimmune).

Exciting things like standing in a stationary position with one foot in front of the other and staring at an object on the wall are just some of the stuff that I'm doing. It really makes you realize how far things have gone awry when you can't even do that without falling over. But the rehab of my vestibular systems is what's going to hopefully help me be less dizzy and have better balance. My big muscles are still strong. We did strength and endurance testing and I'm still in the 70th percentile compared to healthy controls on things like a 4 minute walk and things like that. So that's heartening. But it's awful disheartening to not be able to stay on your feet when your feet are together. It just is what it is to be cliche.

But the good thing about all of this stuff is that it is allowing me to work on what I really need to work on to keep functioning. My old self just wants to push out reps on the Bowflex and have that be a panacea for what ails me. But that doesn't get it anymore. I need to attempt to work on those parts of my brain that aren't allowing things like balance and stability to work right. It's hard to be able to bench what I pretty much always have, but not be able to do leg lifts. To be able to hamstring curl a normal amount of weight, but not be able to walk a straight line. No pain no gain still applies, but it's not simply a matter of just working to exhaustion like it used to be. That is detrimental now anyway. So I'm doing things like laying on my side and lifting my leg off the floor about 2 feet for a five count because my hip muscles somehow have about disappeared. Things like standing with a hand on a chair and lifting my leg up until my knee is bent at a 90 degree angle. Dr. Lew simply does not have the answers to make his body right anymore. Until I went to this place, I had no idea that my quads were just peachy, but my hip flexors have all but gone away. So all the things that can fix whatever ails a body coming from a healthy place are what I'm good at. I suck at figuring out what to do in this arena.

So my new therapist is setting me straight and it's eye opening. Self perception on my part is all but gone. I still THINK I can do way more that I actually CAN. That's good in some ways, but it leads to me doing too much on a daily basis. I'm learning that I need a massive amount of breaks when I'm doing something. I mean one load of clothes folded and to keep from being in pain or going to a place where it will take hours to recover I need to take breaks all the time. That shit is im-freakin-possible for me to do let me tell you. If there was ever someone born with ants in their pants it's me. I used to watch TV standing at the mantle for God's sake. Seriously. That way at commercials I could bolt off and do something; what? who knows, but something. I have more nervous energy than five people I believe. I just don't like to sit down. Well my hand is being forced because I don't like being in pain or being wracked with vertigo either. So I got a little 'sand' timer like Days of Our lives. When I need a break, I have to pull that dude out of my pocket and wait for the sand to finish dropping. It's so much harder for me to do than it sounds!

So here we are. My disease has forced major, actual behavior changes on me once again. I'm OK with it don't get me wrong. I really have no choice so it's not like I can choose another option. Well I could turn into a completely sedentary blob, but I can't do that either. Not until my hand is forced that way since that's always in the back of an MS patient's mind. It's just so different to be 'rehabbing' without the thought of functioning BETTER. I mean this is to make is suck less, which I suppose is the better option than to just let it suck to it's max. potential.

But it does give me some hope. And you all know how I feel about hope. Not hope that I'm going to recover, just hope that I can function at the highest level my burned out CNS will allow. Not to mention the fact it does give me some direction and a goal to work towards. It's getting hard to be OK with all of this decline that's for sure. But once again I have to pull out my mantra of 'it could always be worse', because it surely could. So I'll be doing lots of stuff that I would have laughed at a few years ago just to keep functioning, but whatever it takes. Not really working out per se, but doing things that are supposed to pinpoint a muscle, or make a nerve fire are what I've been relegated to at this point. I have to do it, my other option is to just spend more and more time on the couch until just getting up from the seat is a chore. It could get to that for sure on its' own, but with the way my muscles atrophy, it could get that way by me sitting around too.

This disease is insidious and I hate it. But I have to look it square in the eye if I'm going to do what's right. There's no fighting MS anymore. I'm not going to win. But I can at least make sure I don't let it take me a second before the point where there really is nothing more I can do. Hard to stay pumped and motivated with that being my mindset, but nothing I can do can make me not have this. So I go back to just trying to deal with this with grace and not succumb to the dark thoughts and imaginings of what COULD happen. It scares the shit out of you when you think "if I go downhill as much in the next five years as I have the past five years, I'm flat fucked", so you literally have to learn to live one day at a time and not let you imagination take you away. Keeping those out of your head is hard at first, but not sleeping and not eating and shit makes you learn quickly how to push thoughts away and keep them away. It's all part of the one day at a time thing. Today I walked in here to make this post. So draw a line in the sand for today. I'm walking. If I can't tomorrow, I can't let it eat me up today thinking about it. I have to simply respond to what is actually going on, not what might be going on.

So I'm trying to work on exercising those things which control my muscles, and that ain't easy for sure. I'll keep you posted and let you know how it's working out, I always do!

Retirement decision analysis and random thoughts

2010-11-08T12:26:00.000-08:00

Well I most definitely made the right decision to retire. It's not like making that decision was killing me (it was a bit stressful), but you will always second guess a decision like that. I mean I CAN still walk and talk and type and all that stuff. It just had been reinforced the past few weeks how much being kinder to my body and taking the time to take care of myself has been a very good thing.

I could probably carry on about the reasons why, but it has literally taken about a month for my knee screaming to go down to just a raised voice. Had I been working this entire time, I can almost guarantee that my knee would have just fallen right off my leg. And you all know how important knees can be. But I digress. You all know I come on here to 'work shit out', so I'm trying, sometimes in vain, to come to grips with envying people's walking ability. I was in church Sunday looking around at folks I didn't even know just walking around with their kids not caring about how many steps they were taking. Not caring about "if I go over here and get this, I won't be able to go over there and get that". And just generally being themselves, ie, not thinking about the energy it takes to walk 100ft and if you'll have the strength to do it or not. I was one of those really content guys when the hammer dropped. I really was about as content as I'd ever been. Now you guys also know that I like to be proactive in thinking about stuff I know I'm going to have to deal with.

I mean you have the envy thing, not being a bitter handicapped guy, not being depressed; all of that type of stuff that I feel I ought to try my hardest to head off before it's on top of me. How to keep the monkeys in their cages I guess. I come on here lots to talk about how I'm going to make sure that this or that trap doesn't 'get me'. So why is it so damn hard for me to NOT accept my lot in life as it comes to getting around? I mean I've done a good job of accepting what this f-in' disease has thrown at me I do believe. However, for months now I can hardly watch a commercial where a guy is walking around an amusement park, or a ball game or whatever, without feeling the pang of jealousy. But I think I have it figured out. I have really been able to come to grips with the things about my health that I've able to grieve as a loss. I think it's that simple. I mean I HAVE grieved the loss of my career and am OK with it. I'm on the other side of it now where I don't look at people who are working with envy anymore. It's just right now what's getting to me is people simply walking around when I know they can just decide on a Saturday morning "I think I'll clean out the gutters today". It's that type of stuff that has been just killing me for some reason.

I think the reason it's so hard is that I HAVE NOT grieved the loss of my ability to walk because I still freakin' can. I mean I don't walk well at all anymore in the grand scheme of things. But if you catch me after I've sat around for a bit and I get up and walk 20 yards or so, you'd never even notice my disability. But give me 40 yards and I get to a point where my legs feel like they're made of concrete and I'm bouncing off the walls; literally. BUT I still can walk and I still consider myself fully ambulatory. Just don't make me walk very far. So since I want to stay like this, am I stuck being green with envy about people being who they are simply because I can't grieve it? I can't stay that way, but I also can't grieve the loss of something I haven't totally lost. I mean I've lost 90% of the potential and function of walking compared to a few years ago, but I'm still doing it. So as I'm thinking about this, it kind of hit me that the reason I've been feeling this way is I don't have anything else really going on. I mean I'm being a good housekeeper and all of that type of stuff, but I need some direction.

Our lives are defined by a series of accomplishments. You accumulate them. When you're done with one, you drive a stake in the ground and move on (forward) to the next one. So I think it's more feeling like I've lost the ability to have a direction since I've left work. I mean your direction is kind of built in to your job. Just maintaining the house is not the same as improving the house. So that's what I think I'm going to do. I'm going to work on the house. It won't be easy, but I've got all the time in the world; as long as I stay as healthy as I am now. I can tear a wall out a teeny bit at a time. I mean who cares if it takes ten days to do what used to take 4 hours? I'm home and I need some direction, something to accomplish to move forward, whatever.

Just because you can't do it all, just because you can't even come close to accomplishing what you could get done even months ago, does not mean you should just quit trying to accomplish stuff. It is a requirement for humans I do believe. Once I have a purpose, it's amazing what happens to my demeanor. At any rate, sitting around is not even what I wanted to do in my retirement, but you get so down about hardly being able to exert any effort, I didn't realize that I had just quit trying to exert any! I mean I was always 'saving it up' for work. That's not part of the equation anymore, and this was exactly why. Work was taking more than all of my energy. I couldn't do a damn thing after work, yet you still have kids, wives, lives, yada yada, so you do it anyway. Well I was making myself much worse. But I pulled back too far. Even when I lose the ability to even do 10 minutes of work with my hands in between hour breaks, I'm still going to need a purpose. If you have no purpose, what's the fippin' point? I mean that figuratively of course but really?, what is the point?

We all need a purpose; that much is clear and probably why I still will recommend as often as I can "Man's Search for Meaning" by Victor Frankl. I'm telling you, it only takes about a day to read. I mean I'm not saying anyone who feels they don't have a purpose should eat a bullet, but I am saying that if you don't have one, you should set about getting one! So since I can't impress anymore with my accumulated accomplishments, I'm just going to have to be fine with doing what I can do to feel useful. It beats the shit out of sitting around; although of course there is always a time and place for that, it just shouldn't be all you do!

This kind of sums it all up

2010-10-29T06:09:00.000-07:00

This video is by Dr. Hubbard. He's a neurologist who is imaging folks in San Diego and then sending them off the get treated at a collaborating hospital.

If you're curious about what this is all about, or if you just want to see analogy boy's theories vindicated by someone with a big brain, then watch this video! So good and the reporter is excellent. He asks him about all the 'contreversial points' (there are none) that have been ginned up by the neurological "elite" and is just awesome. Best thing I've seen yet explaining this thing in a way that makes beaucoup sense to me.

Here it is:

http://www.komonews.com/home/video/106175483.html?ref=nf

I wish I knew how to not just supply the link!

last post about CCSVI

2010-10-27T12:45:00.000-07:00

I feel compelled, now that I'm basically 1 - 1/2 years post procedure, to summarize my thoughts on how having the procedure affected me and my disease. A couple of things to start this out with to add framework to the summary:

1) When I got the procedure done, it was SO new. Hardly anyone domestically had done it and we were all hoping that this procedure wouldn't discriminate between the variants of MS (Relapsing Remitting, Secondary Progressive, and Primary Progressive) and everyone would get some of the same results.

2) My realistic goal going into it was that it stop progression at worst and actually make me better second.

Well as far as #1 goes, it does seem to have the miracle stories all coming out of the RR camp. I'm jealous as hell of course, but it also makes a massive amount of sense. I've explained ad nauseum about how, being a card carrying member of the progressive MS club, I feel the miraculous results were not achieved in me because of damage (degneratively caused) vs. inflammation (RR MS). I mean what happens when your arm gets lopped off? You hopefully stop the bleeding and get all fixed up and adapt. You still don't get your arm back. BUT if you have a broken arm, it can heal and go back to normal, or at the very least, regain function. But it is also just as useless temporarily. So I see SP MS as the arm lopped off scenario and I see RR MS as the broken arm scenario. Analogy boy strikes again.

As far as #2 goes, the book is still out for me on that one. I mean I've obviously decreased in function a bit (duh, I just retired!), but it just feels SO different. Very slow for one thing and I'm still far better off than I was before I went out to California in terms of overall wellness and just how I feel at rest. I have alluded to what I think about how aging with a compromised nervous system could just be a faster process than aging with an intact one. I mean it's like the insulation has been stripped from the wires (nerves). Those nerves just have to naturally age faster than their healthy brethren, no? Analogy boy needs to speak again.

To me it's like rust on a car. While your paint job (the insulation!) is very intact, your car looks the same for a good while. Scratch the paint down to the substrate and what do you get? Rust of course. What happens once that process is started? It goes batshit unless you REPAIR it. So the story I'm sticking to right now is that my nerves are like a shitty paint job. They are aging much faster than ones where the paint is intact. So since no repair mechanism was put into play, I took the car out of the acid rain, but I still have rust and the sun (the aging process) is still just killing my paint job!

So do I think it "worked"? YES I do. But for me, it was more like an event. We just shut off the spigot of damaging forces, but the damage is still there. Those of you that read this blog will remember my drywall analogy in the flooded house. I still think it's true. So I had some almost immediate improvements that are still there. If my MS was 'active' those would probably have reset and been overtaken by progression. I do think it worked, but I think my MS was too far down the road to start dancing and jogging again, but I think it kept me from plunging down the rabbit hole at breakneck speed. Those who personally know me may or may not remember me a few years ago, but I was progressing pretty rapidly. So I'm a big fan of the 'liberation procedure' and will continue to expose people to it as the best thing going for MS. To me, MS meds are shit. Plain and simple. They didn't work on me and they pretty much suck for everyone else whose MS is in the "it's starting to actually affect my daily life" camp. I would have sworn to you that Avonex was working on me for the first five years or so since I didn't have daily life affecting MS. Unless you're progressive out of the chute or have an aggressive case, most people have many good years post diagnosis until the disability starts to accumulate. Back in my very first post I talked about how I was on the cliff of home modification, life modification, whatever. Well since I was on that edge, I think the rust is still continuing since it had already started, but not like it was. To me, for right now anyway, I'm just aging with a severely compromised nervous system.

There are other things that aren't all glittery about this procedure to be sure. My neck still hurts like hell in certain positions (and probably always will). I can absolutely send myself through the roof if I swallow while looking down and having my chin pulled back a little. That's the stent knocking into something I'm sure. But I'm glad to have the stent. My jugulars will stay open because of it and I just need to not use that position that hurts!

So I'm wrapping up this chapter of this blog. I may not post for a while as I'm thinking about writing in other areas for something to do. I just have not had anything new to report about "My hopeful journey into actual MS recovery" for a while. Now it's just trying to make it from this point on. So this thing has more or less become obsolete to me. I am probably going to keep it open, but I'd like to change the name to one that's less than 100 characters or so! Thanks to everyone who read about this journey, your support was invaluable. I'm still here, still kicking (as hard as I can!), and still fighting this battle against an opponent I know I can't beat.

I'll probably actually post a lot more now that I'm retired because daytime TV SUCKS!!

Retired

2010-10-04T14:34:00.000-07:00

I just published the last post since, I'm happy to say, this program automatically makes drafts like every minute so you don't lose any of your random thoughts! Well I suppose the title sort of gives it away so I'll get right to the monumental decision I'm in the process of making. I went to see my very cool neurologist today and she helped me make a decision. She didn't help me by steering me, she helped me realize that you don't have to have one foot in a nursing home to retire. I don't know what's what in the world of my progression, but I don't feel like I'm going down a hill like I did before the procedure, but I also feel like my left leg is weaker than it was six months ago. So much so that it has hindered me to the point where it's thrown everything out of whack except my eyesight. It's just now obvious that I wear out and have to help my left leg by limping at 9AM now vs. 9PM where it was a while ago. I mean I CAN still walk. I just can't walk very far. So I went up a notch on the old EDSS (Expanded Disability Severity Scale
http://mult-sclerosis.org/expandeddisabilitystatusscale.html). What it is is that you climb from a 4.5 to a 5 just by being able to walk less. And that's the thing about me and walking. We have a very tense relationship. I can do it, but just not very far, and hells no when it comes to walking around stuff, over stuff, in a tight space, or anything like that.

It's got me down for sure, but I know I'll get over it. What's happening is that my "load" is now taking as much time to manage as doing my job. By "load" I mean your stuff you have to deal with to actually DO the work. It started about three months ago as I started voiding less of my bladder at work. So then I obviously have to go pee more which in turn requires more walking and then the 'cascade' starts and everything starts functioning poorly. So I took a leave of absence from work. It's a wierd thing to do that knowing that you don't just have to go sort stuff out, or do some extra therapy to get back to whatever level of function you need that you aren't performing at. It's not like you go off to 'get over something'. There's no getting over this and no amount of relaxation or time off is going to improve my condition. But not taking care of myself can most definitely deteriorate my condition. And that's what's been happening. Stress, working too many hours, skipping therapy appointments to meet deadlines. All that kind of stuff. And it was making me progress again. I obviously can't say that with any kind of certainty, but I've only been off two days now and things like my bladder and bowels are already working markedly better since I'm allowing myself time to deal with my slow motility instead of just pushing it aside and dealing with things later with medicines that KIND of work.

So although I'm very anxious awaiting the approval of my disability application, I know this too shall pass and I can now manage my disease instead of trying to just blaze through the day and getting all stressed out and almost having many, many accidents, dizzy spells, fatigue and everything else that comes with pushing myself physically. The relief is absolutely amazing since I can actually sleep when I need to. Be still when I need to and all sorts of stuff that I didn't allow myself to do so I could keep working. Working is important to me. It has just gotten to the point where it was killing me to keep trying to be more than I am physically. I mean for real. The pain and headaches and weakness. It had just become too much and I'm taking a much needed break. For how long we'll see, but I have to reprioritize and put my health first. That seems so obvious since you can't do what you want without your health and in my condition it's even more important to take care of myself.

The one thing that is the absolute hardest to deal with here is to stay up for "the fight". Everyone who knows me knows I'm a fighter. I've fought this mother tooth and nail for ten years now. Here's the quandry: When you're fighting, you pull your motivation from whatever goal you are trying to achieve. In most cases, you fight to win the fight. There's no winning this fight. So I have to get up to have things suck less. Now there's a motivational poster if I ever saw one. "Exercise as much as possible despite the pain so things can suck less than if you didn't!". Totally facetious to be sure, but that's what it feels like. I'm going to be going to therapy and doing all that stuff, and I'll do it, but I dare not call it 'rehab'. Rehabilitation is to do something to get better. The therapy I'll be doing will just make things get worse slower I suppose. That's a very hard place to get motivated in, but I'll figure it out like I always do. I don't have an option and I've kind of come to a quiet calm realizing that, for me anyway, the procedure most definitely 'got in the way' of my disease progression, but has not completely stopped the disease process.

I firmly believe that is because of my type of disease; secondary progressive. My shite is not inflammatory anymore, it's degenerative. I don't even know if the same mechanism that screws you up in the beginning is even still in play anymore. I mean I haven't sprouted a new brain lesion in years despite progressing. And I'm fast approaching the 18 month mark where Professor Zamboni had published that for progressive patients at 18 months, there was really no appreciable difference. However, that could also mean I could stay stable and that's what I'm hoping for obviously, but things that have happened as of late kind of dispute that. Yes, I am most definitely in a better spot than before it all since I'm still not dependant on my cane. But I most assuredly can say that my left leg is weaker than it was. That means progression. Whether it's just aging with a screwed up nervous system (ie, things age much faster in this state), or degenerative progression I don't know and really don't care since there is nothing I can do about it.

So I WILL keep up the fight since that is the ONLY alternative vs. despair. I simply won't go there; I can't. I'm not good in that place and you all know it is paramount in my mind to figure out how to be somewhat positive and forward thinking through this. I can't say I'm not bummed fo' sho'. Who wouldn't be? I'm allowed that and it doesn't mean I've given an inch to anything. It's just a shitty situation. So now I have to go on long term disability while I figure out another way to make money. I haven't a clue what that will be, but I hope this all has opened up some sort of creative door in my engineer's brain and I can start creating stuff like books or poetry or something. I mean aren't all the good artists tortured souls? lol! So anyway, I'm getting tired of typing and am about out of thoughts for the moment so I'll sign of with someone else's thought!

"There are two classes of people on this earth; those who espouse enthusiasm and those who despise it" (Germaine deStael) I think I am an espouser....but don't tell my wife!!

Still movin' on to a point

2010-09-20T14:52:00.000-07:00

My last post literally left me exhausted. After the last few years of being an MS patient named Lew, I went off to become Lew again; who just happens to have MS. I'm doing pretty well with all that, but it's tough when your illness is advanced enough that you can barely push it off to the side for hardly 15 minutes with out a bathroom reminder, a dizzy reminder or just good ol' pain. So I'm still working on living WITH MS and not FOR MS. I was doing that. All the constant introspection to see if things are better or worse will literally drive you crazy if you're not a completely egocentric person to start with.

So I had realized that I needed to not be constantly talking about 'IT'. I think I was wearing my wife out a little bit and didn't even realize it. Thank God my wife is just like me and will say what needs to be said when it needs saying. One profound thing I've been struggling with, and still will maybe forever, is relating to the 'rest of the world'. Don't get me wrong. I haven't gotten out of touch, or gotten bitter or anything that prevents that, but something was/is going on there that I just want to try and define. For some reason, defining things and laying them out there in writing or by talking, really helps me process it. It's almost like I'm going to struggle with "this" or "that" until I write it down. Maybe it makes it more real, or maybe it's just me drawing a symbolic line in the sand and making it solid rather than ideological. So what's the problem?

Well for me it kind of hit me when I was watching some reality show (it was probably Top Chef) and watching someone just getting bent completely out of shape. Now I can do that to, so it wasn't just the act I had problems relating to. It's just that I had gotten to the point where it just seems like everything except getting healthy/staying healthy doesn't deserve that much energy. I found myself often times thinking that 'everyone else' is just complete drama queens. I was coming from the place that it all seems so trivial; everyone's problems that have them carrying on. I was thinking "that's all small stuff". And maybe that's true. I often think about how astonishing of a person I would be if I can get healthy again. Like the guy who kicks Stage 4 lung cancer and can truly live like he's dying for the rest of his life and only give big energy to 'things that matter'.

But that's so nihilistic of me. You CAN'T live like you're dying (I'm using the Tim McGraw song as reference here) until you have that situation actually happen. Sure you can try, and you can even make a very good effort. But those who've been there and those who are there know what I'm talking about. It's like the reason why AA works for Alcoholics. You just can't quite relate until you've lived it. I mean you can be uber educated about it all and you can even work in the field for years and years and although you may get it intellectually, you can't feel it. So me smirking at people carrying on about something or other like I'm above all that and why can't they see it as 'the small stuff' is doing nothing but making me resentful of everyone else. And that's why I'm writing about it today. It's all part and parcel of me trying my damndest not to get resentful, bitter, depressed, or whatever from all of this. I know it's not a task like something at work, but that's the way I have to tackle shit, so here we go.

Life and the changing attitude of this blog

2010-08-21T09:10:00.000-07:00

I created this blog about 14 months ago to track my progress through the CCSVI procedure, sometimes called the liberation procedure. It has become completely evident that the 'rush' of things to be on high alert for after the procedure, things like improved heat intolerance, improved walking, etc., has been relegated to simply monitoring myself for myself's sake. The shine is off the procedure, I've been given my gold star at my one year check up, and my jugulars are flowing freely as they are held wide open by stents. So what happens from here is not only going to be very gradual, but also simply the consequence of me living my life. In other words, the treatment/procedure I had done is not 'active' anymore like it was at the beginning when I was really noticing some profound improvements. I mean I put my cane away, how huge is that? I still don't need it by the way. And there are those things where I've not noticed much change at all. But, even though I don't have proof of anything, I'm doing much better than had I simply just continued to take the complete shite MS drugs. To me anyway, it's a fact. No one knows what's going on with themselves like someone with an incurable disease. You're on high alert all the time to make sure medical intervention is not necessary and things like that. so call it psychosomatic, call it actual healing, I don't give a shit which, all I know is I can do so much more than before and that was the ENTIRE goal of doing this untested procedure. So it's time to turn the page.

But turn it to what? The answer is living life. I'm not cured in that there are still issues in my leg strength that will always be there until something like stem cell based repair comes along. Until that/if that ever happens, I will be living life with my deficits. My deficits are still very detrimental to living a 'normal' life. By that I mean a life that is not consumed by "where the hell is the bathroom?", and "I can't walk that far", and "I can't carry that", and "I can only do so much", and "I can't drink any liquids past 8:00pm", and the list goes on. I'm not whining. After dealing with those things for so long you adapt and it becomes part of your approach to life. It has to be unless you just want to get desperate every single day because you can't do everything. Some people actually do that. Very self defeating, but people still do it nevertheless. But I still need to write. It's my personal, cathartic activity that allows me to organize and capture 'where I'm at' and record it to look back upon as fleeting thoughts that come and go need to be captured. So how I live my life dealing with the stuff I deal with and pursuing happiness is what I must change the nature of this blog too. It fascinates me how differently people thrust into the same circumstances can have such widely varied approaches with how to move forward, or move backward, which is what many do.

I can't be one of those guys as many of you who read this know about me. I refuse to let this consume me. Now that is a very bold statement to make, and probably comes across very naive/pompous to someone who has this disease who is in a nursing home. I'm not there right now, and hope to never be, so here is where I am and that is part of my attitude. I can't 'beat' this like people who you see battling cancer. I admire the hell out of those folks and actually envy them sometimes. It's something you CAN fight. You don't always win, but there is an endgame. With this there's not, so the only way to fight is do all you can, like have the procedure done. So since I can't beat it, I have to learn how to live with it. AND I have to learn, or attempt to, thrive with it. Reading works like "Mans' Search for Meaning" by Victor Frankl and works like that are what makes me think it's possible for people to thrive under any conditions. And when I mean thrive, I simply mean have peace of mind. By the way, if you haven't read that oh so short book, you are doing yourself a disservice. It's not about health issues and is, I think anyway, one of the most profound modern texts. I read it in a day; it's that short, so read it!

So I have really been struggling with what to post that's for sure. I mean things simply aren't changing that much so I would just be taking up blog space expounding on "things are the same" every week or so. I got some inspiration from a very strange source. A man named Christopher Hitchens. Those of you who read current events, know of Hitch. He is a firebrand essayist that can only be described as a devout atheist. He has an acerbic tongue and generally just pisses people off with his writings, but he always makes you think. He fancies himself a modern day Hemingway for sure with his ever present lit cigarette and confrontational, unapologetic attitude. He has advanced, and probably, terminal cancer. He is obviously spending time writing about that. His thoughts hit me hard because it seems that no matter where you are coming from, people in similar situations have thoughts that seem to meet at the same point. He is attempting to describe his "deportation" to the land of the sick/gravely sick. Those of you dealing with something know exactly what he's talking about. It really hit me that statement. It's very frustrating to watch the world continue to go by at a pace you just can't keep up with. But at the same time, you know the world shouldn't slow down to your pace either. So it's very scary to watch your loved ones continue to do the things that you wish you could and not begrudge it at all. It is so scary as you definitely feel like you're going to be left behind. And then you're abandonment fears set in, and then it starts to affect your self esteem. It's a vicious circle that is extremely hard to figure out how to get out of.

I mean after all we are all obviously at least half 'physical' and it's also obviously how we present ourselves to the world. You didn't go after your spouse upon first laying eyes upon her in the context of "I bet she has a great personality". You went after her physical body and then learned to love her personality, or left because of her personality. So the physical gets you in the door and then personality takes over. It's just the way it is. I mean after all, aren't we all the cum sum of our accomplishments and our decisions? We simply can't separate the two and just be physical or just be mental/spiritual/emotional now can we? Think about it. My disabled idol, Christopher Reeve, still presented himself to the world as a quadriplegic. To me, that's when he became Superman. With his positive attitude while sitting in that chair able to only move his eyes. So that's what I mean when I say that people in the same circumstances handle it so differently. I mean there are many more bitter people who are quads than Chris Reeveses. But there are also plenty of people like him. My buddy Mitch (http://enjoyingtheride.com/) has a great attitude. He's also one of my idols whether he knows it or not just by being Mitch.

So how do they do it? I aim to figure it out. It probably won't work quite that way. I'll probably just get there by going on the journey. It's so difficult. I NEED my wife to desire me even though I may become, in my eyes anyway, undesirable. How do I keep myself "relevant"? How do I not succumb to just getting by and making it everyday when it's so hard to do anything else? I just have to and this blog will become my sounding board as I try to figure it out. I mean that's what we are ALL trying to figure out, but it's more important to me now than it was when I had my health. I probably needed to pay more attention, but things like career and stuff were the distractions. I can't do that now. I mean I'm living LIFE, not living CAREER, so life comes first. I'm done cancelling physical therapy appointments because of work. I mean if there's a major deadline and I have to push one out, then so be it, but I was bad with a capital B with stuff like that to this point. Just regular work stuff came first and I was always cancelling, and in some cases not even getting started on, things I need to be doing to stay healthy in mind and body. Then I realized that the reason that it was always me doing the cancelling was because others' weren't. I'm not carrying all the load anymore. I guess I'm becoming more selfish with my time, but I sacrificed my own desires for long enough; it's someone elses' turn.

I really look forward to pontificating on here and going on a journey to figure out how to capture some of the old Lew optimism that made me such a content person before all of this. I really did have it dicked and I can again, I just have to undergo radical transformations in to what makes me happy and what establishes my self worth. I mean I'm still raising a teenager and I have a relevant job there. So maybe what it's going to take is to turn my eyeballs 180 degrees and look outward more and help people to the best of my limited ability. Sounds like a good place to start because the happiest and most content people I know are also the most selfless. I also love quotes and want to end this ramble with one about raising children. I'm trying to figure out how to make my daughter feel very convicted about following HER dreams. I ended up following others' expectations and it resulted in career success because of my work ethic, but I never enjoyed it, and still don't for that matter. I want her to be her own wheel, not just a cog in one. So our old president Harry Truman had this to say: "I have found the best way to give advice to your children is to find out what they want and then advise them to do it". I was advised to do what the conventional wisdom was at the time with no regard to what I wanted, so we'll see how that works out for my kid!

So it's time to turn the page somewhat. I am so utterly sick and fucking tired of constantly thinking about 'how I feel' and monitoring everything that goes on with my body that I could scream. So in order to get out of that feedback loop, I need to change something since nothing changes by itself. So writing in a different vane will hopefully get out of my MS obsession. I have MS, I don't need to let it define me. I need to take a step back and figure out what is going to define me going forward. Just being "the sick guy" didn't really work out that damn well.

Yes, I'm still alive and doing fine

2010-08-17T05:36:00.001-07:00

I looked at the date of my last post and realized it's been longer than I thought since my last post. Well Stanford is starting their trial and nothing has happened as far as my case is concerned. Dr. Dake has passed my images around the CCSVI community, and everyone thinks it's a pretty benign thing what is going on in my sub clavean; coupled with the fact that I had good flow there on the venogram. So I'm probably not taking any interventional type steps for quite some time unless I really start going downhill.

My knee still hurts like crazy, but I'm going to physical therapy and we think we can strengthen it and help in that. My only thing I'm going to talk about is Ampyra. I took myself off of it after six weeks. I do think that it helps a little with spasticity, but it wasn't that noticeable. I did it for a couple of weeks longer than people who swear by it say you need for it to 'kick in'. The main reason I stopped is the aggravation it did to my constipation (I'm a poet and didn't even know it). I swear, every MS drug available causes constipation. From oxybutinin to this Ampyra, and I just wasn't getting that noticeable of results. So I'm off of that and am still doing just fine.

I'm handling a great deal of stress at work and have even worked a few ten hour days where I had to be on my feet when it was blisteringly hot and humid out. I did go down in function, BUT I was sweating profusely (a good thing) and my radiator was working well as I managed to hang all day. These things are great tests of what the procedure has done for me. I couldn't hang standing in the factory when it was 50 degrees out before all of this, let alone a heat index over 100. Not only did I hang all day, I did it for three days. So what I'm still dealing with is just 'having MS'. I seem to say every post that "I'm still walking and working". Well the different 'shades of gray' that have been really all I describe are starting to just seem like the ups and downs of life. I mean my CNS has been damaged. I can't say with any kind of definity (I hope that's a word!) that I'm progressing or not. All I know is that when I look back, I seem to be doing very well compared to where I was at before this procedure. And frankly, wasn't that the whole point?

So I'm at work and have to keep this brief as my break is about over. I'll post more, but I wanted you all to hear MY take on Ampyra and also to let you know that my postings seem to be more spread out because life is getting in the way. That could be the most positive statement about CCSVI and the procedure I've ever made.

A couple of weeks past my one year 'check up'

2010-07-24T12:16:00.000-07:00

Well it's been a few weeks and I'd been waiting on the images from my MRV to be able to show what's what in my head and neck instead of just describing it, but since that's where we're at, let's get it on. As those of you who are frequenters of Facebook and ThisIsMS.com know, things haven't been totally on the upswing for me in the last few months. I need to put this all in context however. After all, I'm sitting here in my dress clothes getting ready to go to a wedding reception NOT wearing my hiking boots. Those of you who know me personally know that I wear boots or hi tops 100% of the time since shoes simply don't have enough support and it will wear my calves out in 20 or so steps. No shit. I can't explain it and I really don't know why, only that it is. I still wear them most of the time, but before the procedure they were also my bedroom slippers, I would step into them right out of the shower and it was actually pretty funny sometimes; at least according to my lovely wife. Suffice it to say that I was scared to wear anything else since I would get weak, in pain and wobbly very fast out of them. So I didn't EVER wear anything but those dudes out of the house. So even though this isn't a post where I tell everyone about all the things that have improved, I'm still so much better than before it's remarkable. BUT since I did have improvements, it is absolutely a let down when things start coming back.

So since I posted a while ago about all my symptoms and whether they were better, worse or unchanged, we'll just do it again. Here is that list from that post:

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

The things that have gotten worse are the constipation (qualifier that I'm now taking two different drugs where that's a side effect, so the jury is out on whether that's actually worse from MS or the drugs). I've been getting transient vertigo when I over do it and that was almost gone. Once again, it's still markedly better than a year ago. Leg pain is the biggest thing that's gotten worse. If there were such a thing, I'd go for a knee transplant. My knees hurt so damn bad I'm walking more bowlegged than Robert Duvall; and I already WAS somewhat bowlegged. And finally my leg strength has diminished somewhat also. I simply can't be on my feet for as long as I could even a few months ago and can't walk as far.

So now you know what's going on with me. Nothing has gotten better, and those few things have gotten worse from my new post procedure baseline; not from where I was before the procedure. So all is not lost. It's just scary AS HELL to not be improving since the opposite of that is getting worse. And no one wants that. Life is good, just not as good as it was a few months ago and it's probably more scary than actually physically life altering so there we are. So I'm hating stairs because of my knees, hating getting dizzy again, but loving that I still don't need my cane. So on to what we 'found' at Stanford.

If I would have said that I was fine, Dr. Dake would have just said everything looked fine too. Yes, I'm still the proud owner of two McDonald's straws for jugular veins. And yes, I still loves me some stents. That ONE SINGLE article in the Wall Street Journal has everyone majorly histrionic concerning stents. Don't ask me why since we ignore the people trying to tear this down on every other front, so that one puzzles me. After all, there is a 40 some percent restenosis rate with balloon angioplasty, so count me in as a fan of stents. But since I didn't say all was hunky dory, he kept looking further 'down the MRV'. Now I have to describe what we saw without pictures. I hope you all can picture this in your mind's eye, so here goes.

When you are looking at your images from the top of your head down, you see your carotid arteries and your jugulars on the right and left. In the image, your nose is at the top of the screen and your ears are left and right. Well your carotid arteries show up as these perfect, white circles on either side of your head since the contrast dye makes them appear that way. Your jugulars are right next to them. The first, pre procedure images had my nice round carotids and my jugulars were just these flat lines. Now my jugulars are even rounder than the carotids. They look great when great means open for business. So since I said I wasn't great, he kept looking downward into my body. Your jugular veins 'dump' into your braciocephalic veins, it's either those or your subclavean veins. If anyone points out to me that those are misspelled, you would probably be right; I don't feel like googling it right now and that is the hooked on phonics version. Well those veins that the jugs dump into (know I'm not talking about actual jugs Lisa you perv :-)) go 'across' your body, or 90 degrees opposed to your jugs. Well there's an area where that SUBC or BRACIOC vein goes around something (I think it was my trachea) and it's stretched so hard that it is markedly narrowed. He noticed this since there was a collateral vein shooting off. Your body just doesn't have collateral veins unless it needs to manufacture them since the main vein isn't doing its' job. They show up on your legs as spider veins, that's what they look like in MR images also.

So we also looked at my last venograms from my last procedure and there IS a flow issue there. Not like the ones that were in my jugs, but one nevertheless. So I could be having reflux right there. If you remember, he saw something on me the first time that he didn't know what to make of, collaborated with other doctors, and I went back out and we fixed it. Same story this time. He told me he could put a stent in there, but he just doesn't know if it would do anything or not. So he's supposed to send my images around to other guys that have been doing this in Poland and other places and see if they've encountered this and what they did for it. Just because there's a collateral vein there doesn't mean that the occluded vein plus the collateral aren't doing the job, but we do know there's at least some impingement to flow at that area, we just don't know if jamming a stent in there will have any effect. So we wait. This has given me a good reality check fo' sho'.

Let's say that is causing issue, and there's nothing we can do about it. I've already accepted the fact that I have MS. So when MS'y things happen, I can't act like someone shot my dog. Those things happen when you have a condition. So getting upset every time things happen is like banging your head against the wall. But that's what I was doing. I started to get dizzy and I was all screwed up about it. We didn't know if this was going to take us back to normal; hell, we didn't know anything. But I see other people who are having remarkable results from this. Guess what? They are still relapsing and remitting. I'm progressive. That sucks but it is what it is. I can do NOTHING about that. I'm still working. I'm still doing social things (not everything, but 'stuff'). I still have a great marriage and daughter. So I can't 'woe is me' this situation. I just can't. Those of you who follow this know that I'm hell bent on handling my MS with grace no matter what happens. People do it and I have to be one of them. Sometimes when you get scared, you get desperate and feel hopeless. It's not to say that those times don't happen. They do, it's that you can't let them define you. I mean this is my life whether I like it or not. So I'd be a giant pussy if I let it make me put my head in my hands and just give up. My life is decidedly not what I wanted it to be; but it sure could be worse. But I can't do a damn thing about what I am now. I need to like myself and have a way of looking forward to tomorrow. When you quit doing that, you are screwed. I can't take self esteem from physical prowess anymore. Boo hoo, I haven't been able to do that for a long time, so I need to get over feeling envious when I see people doing things as simple as dancing at a wedding. I'd LOVE to be able to do that, but I can't so I need to move past that. I have to say that I do miss the nutjob and very physical guy that I was. But that in and of itself is not enough to knock me down. People who let that get them are not working hard enough.

I still have loads of hope locked away. No one, except someone who needs it, quite understands how powerful hope is. It is probably the single most important thing that keeps us out of the looney bin. It's amazing how my attitude towards hope has changed now that I watch what happens to me and others when you get some hope. It's an awesome thing hope is. It allows you to look forward. It's kind of that simple. It's a reason. It's whatever, I can't fully express it like I want to so I'll stop. A good analogy would come in handy here but analogy boy just doesn't have one! OK, here's sort of an analogy that I'd like everyone so inclined to read. It's a woman's take on having a disability (she just happens to have lupus) and it is the best thing I've read in terms of describing what it's like to people that aren't sick. Here it is, and it's great:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I read a story in 'The Week' last week about the only surviving quadruple amputee that got that way in Afghanistan. He has no arms and he has no legs. Yet his spirit is indomitable. The whole hospital is in love with the guy and he's touched a nurse so much she wants to marry him. He talked about wanting a daughter. You know why? So he could tell her first date "you should see the other guy!". Now how can I EVER feel sorry for myself when he's out there?

Well this sucks

2010-07-01T16:25:00.000-07:00

I have to write down what's been happening to me as of late. Part of it could be that I folded my knee in a complete flexed position (calf pressed to hamstring) with all my weight on it and felt like my knee was blowing up, but I don't think so. A bit on that: I was walking down the stairs and just caught my right (good leg) heel on the carpet of the stairs, luckily only about 4 stairs up from the floor. Well with feet that don't move too quick, I couldn't catch myself by hurrying down the last few steps, so I had to jump to keep from hitting my head on our buffet. My knee just buckled since it was my left leg. So now that knee is screaming in a big way. Going up and down stairs is the hardest part. Especially up when I try to lift with the left leg. It literally feels like a nail is being driven into my knee. The feeling is on the inside of the leg at the area of the knee that directly 'looks at' the other knee.

Well while that sucks, I have been feeling like I can't do shit here lately which started happening before I hurt my knee. By lately I mean the last week or so, but I know how things that are injured can screw me up all over, that's why I mention it. This has all been since my last post. The marker I am using to say all of this is camping. Those of you that keep up with this blog know I camp. Well getting ready to go and setting up camp (I have a trailer so it's not like setting up REAL camp) is harder than it was even on Memorial day, let alone last year. This was a line in the sand type of activity because of the large chunks of time between camping trips, so I notice it more succinctly. I also have been having a harder time peeing. That really sucks as that has been, besides my eyesight, my longest running symptom and had remained pretty much the same for a long while and actually got a little better post procedure. There are some things going on at my stent site that make me go hmmmmm.

As some of you who also read this know, I have a stent in an area you can feel behind, and just below, my ear. I've talked about it being swollen and talked about it hurting mildly. Well since this all started it has, no shit, hurt worse than usual and also I have a bit of puffiness just under it that makes is almost feel like swollen glands when you're sick, but only on that side, and it's much softer. It's also pretty tender. So my hope is that there is something to that. I don't think it would have shown up on the MRVs I've had since then since we were looking at the veins only, but this time I'm going to make sure we look at that. This really sucks as I had really, really felt stable up until now.

Now don't get me wrong; I'm still doing the things I need to like working and keeping myself taken care of and the house picked up. Honey, if you're reading this, I don't mean I clean the house. We have a trade off where she does things that require cleaning and I keep things picked up. I don't have to bend over as much and for just quick bends to pick something off the floor, but I digress. I'm still GOING camping, although there are things about it I'm dreading. Just things that require a lot of movement. We're the types that have to have the camper just so to relax. Well then you have to take it all down and my wife has a shift at the hospital. Other than that I AM looking forward to it. It beats working but it will hurt at times. I'm just getting exhausted after not doing shit. It's frustrating, once again, because I've been doing so well. But this paragraph is to let you all know I'm still living my life, it just has become hard and painful again here lately. And it's been quick. I don't know if it was a 'straw that broke the camel's back' type situation, or something is clogged up and shits' gone wild.

Which leads me to theory corner. Since that area has been tender since before my MRV with the guy up in Michigan (E. Mark Haacke) and he didn't notice anything, I think once you go progressive, something else happens. Yes I know you quit popping off lesions and quit having relapses, but I think it involves your upright veins. I am saying that ignorant of whether anyone has looked at these. I'm talking about your vertebral veins. At least I think that's the spelling. These drain your brain when you're upright. Your jugulars only drain you brain when you're laying down. I just have a feeling it becomes 24/7 when you are progressive. I have no way of knowing that, but it makes sense to look at those veins. Hell, he may have, but I don't remember talking about it. That's another thing that's been going on.

I've been struggling for words (I know) and not being able to do simple math (I know again). For vocab boy, that's a toughie! But seriously, it does feel like there's something going on. I just hope it's not MS progression, but if it is, I once again hope for the doctor to find something wrong. I really do. So I don't know what to think about this. Is it ineffective on "my" type of MS? Do I have lyme disease? I just don't know the answer to those questions. I doubt anyone knows the first one.

There is this article:
http://www.expert-reviews.com/doi/pdfplus/10.1586/ern.10.69

that really makes me hopeful that some of the money we throw down the toilet (of course, my opinion, but just ask anyone on these shitty drugs) on trashing MS patients' immune system will be diverted to stem cell research. As I've always said, and many others have echoed, this is probably just a piece of the puzzle. I've always thought that after we shut that slow blood drainage down that we'll need repair. So off I go on another journey I imagine. I'll be first in line at Ohio State if they ever have a trial for stem cell therapy. While I hope that my Dr. at Stanford finds something, I'll also be keeping an ear to the ground on the stem cell front. It should give me something to do.....!

I also have to give credit to my friend Joan for turning me on to this article. Even though we don't talk every day like we used to on ThisIsMS before all of this, that woman holds a special place with me and I imagine I do with her also. Love 'ya Joan. I imagine I'll wait until I get to California to post again. Keep your fingers crossed that I need to be roto-rootered.

I am so busy it's not even funny

2010-06-25T06:32:00.000-07:00

I haven't posted in a while and I wanted to just give a brief update as to what's been going on. I have been exercising and actually feeling some decent benefits from it. I had made a very large post bemoaning exercise, but only once you've passed a certain point in your disease progression. I was fully feeling, after about a month of nothing but hurt, that exercise of your muscle groups that have severely damaged nerves is detrimental. The muscle groups that didn't have as much nerve damage were feeling like they were supposed to. They would get sore from working out, while the damaged muscle groups were experiencing nothing but pain. I'm glad I didn't publish it.

What I believe occured is that I was so far out of shape and had so much atrophy that I had to bust through that because literally the day I was going to post it, I had more endurance in my left leg where the nerves are damaged. So I still can't do much; about 15 minutes on the elliptical and about 15 minutes on the recumbant. When I'm done, I literally can't walk for about 5 minutes without falling, so I just sit it out on the recumbant. However, about an hour later I'm starting to feel energized and stronger. That's a very good thing.

My bladder is acting up a little more than usual in that it takes me literally about 5 minutes to get out my 200 ml, but I am still getting out that amount. It's just harder to do so. Hopefully the Ampyra I'm getting ready to try will help with that.

I'm feeling really good about my decision to have the CCSVI procedure done. Looking back a year ago, I really am much better off. Like I always say, there's damage in my CNS that won't get better without a repair mechanism. That is what it is. But my being bummed about that and not just all giddy that I stopped progression is telling in itself. I have gotten somewhat better, and I want more. If NO improvements would have happened I think I'd be OK with just staying the same. But since I got a little, I want more. It's human nature.

I wanted to update since I know silence leads to speculation. There's so much misinformation and speculation out there now I didn't want to contribute to any of it! I am still doing very poorly in the heat, but other than that, I'm not doing too damn bad and am still working full time and not even thinking about not being able to handle it. A year ago? Thinking about long term SSDI was probably on my mind 4 hours of an 8 hour day. It's just huge that this has allowed me to stay employed and engaged. Being that distracted at work can make you lose your job for other reasons besides your condition! I go back out to Stanford on 7/12 and will give a full report on what they find. There has been some good speculation concerning whether or not just getting your jugulars and azygous veins opened up is the whole enchilada or not. I don't know, but I really feel like I bought myself some time to actually find out instead of jumping in with both feet into something I KIND OF understood. That makes me happy. So someone else can be a guinea pig on other parts of our circulatory system if anything comes of that!

Normally I don't do this, but....

2010-06-09T15:15:00.000-07:00

I don't normally get too excited about an isolated event. MS teaches us, and you've all heard it, that there are good days and bad days. That is totally true when you're relapsing and remitting, but it's somewhat true also when progressive, but not as markedly. So one thing that I constantly test myself with is mowing "the hill". It's a small hill behind my yard that is quite steep. It used to be covered with honeysuckle and lilac and you couldn't even walk in it, but me and my wife cleared it out over the years and I keep it mowed. My daughter has been keeping the yard mowed, but I don't like her on the hill, but she has done it.

This hill was something I could not even do pre procedure, but have done it many times since then. The last 6 or 7 times, it has been the same story. I start with a modicum of energy and about 1/4 of the way through, I'm trashed. Matter of fact, the last two times I did it, my left leg got so bad I was literally dragging it across the ground and when done, I just would sit down right there in the middle of the flippin' yard and have to wait 5-10 minutes to even get back to the house.

A good deal of the problem with the energy drain is heat intolerance. We MS'rs melt in the heat; it actually used to be part of how you get diagnosed I believe. Get 'em hot and watch 'em wither. Well for a few years I've noticed that I don't sweat like I used to. This is a topic that has been talked about a good deal in the MS community and lots of people post CCSVI procedure comment on how they're sweating better. Well I used to sweat like a whore in church and I am one of those guys that can soak a shirt through just being in the sun. It has really gotten difficult to be in the heat and not sweat. Your head gets all over heated and you feel like you're having a heat stroke. Then your vision goes and you just get weak as hell and start stumbling around and it's just a shitty situation.

So today after work I decide to try the hill despite it being 80+ out and very humid. Well I started and it was going pretty well but I was starting to get too hot. Like throwing a switch I went from going "oh great, I'm going to over heat" to "shit, I'm pouring sweat!". It was like something just tripped. I can't explain it. My memorial day camping trip was very taxing as I simply couldn't even be in the shade during the heat of the afternoon as I was not sweating. I've always been heat affected but once the sweat started pouring, I'd only 'go down' so far in terms of function. Lately it has been going down and keep going down until I can't do anything.

I don't know what happened. I was thinking it was maybe high humidity that wasn't there over memorial day, but I was sweating my ass off. When I took a seat when done and bent over to tie my shoes, it was almost a stream pouring off my nose. It felt so damn good you don't even understand. This is giving me some hope that maybe I can enjoy the outside this summer. I never enjoyed it like the healthy days of course, but only going down to a known 'floor' and not getting worse let's you know your limits instead of just not even trying since you don't know that you can do ANYTHING. It was really great. When I was all done, I actually was walking kind of normal. Two weeks ago when I did this, my daughter came out of the house and was very concerned. I went right up the stairs on my deck and sat down and had a glass of ice water. It felt so normal! Doing yard work and sweatin' my ass off was one of my favorite things to do. I love to sweat; I've always thought it was kind of cleansing. But just getting hot and getting a beet red face and ahving your temp. just go up and up sucks.

I didn't have to cool off artificially with ice on my neck or anything; my radiator was doing it. Awesome. Now I'll probably pay the Gods of superstition who control 'jinxing' for spouting off about this, but this was really cool. It was one incident, but one I know the normal outcome of very well, so I don't look at it as just having a good day. To be truthful, it wasn't really all that good of a day physically. The most astounding thing about it is that I could've kept going. All the other times this year, by the end the mower is my walker and there's no possible way I could keep going. I've fallen many times while doing the hill also. This was flippin' great. It is an amazing dynamic that happens when something like this occurs. You know you shouldn't because of the possible let down, but you immediately start thinking about getting more engaged in all kinds of stuff. Doing this, doing that, a little of everything. I guess it really comes down to that. I did this so I could do more 'stuff'; it's pretty much that simple.

Some clarification and a forum post I just made

2010-06-02T09:58:00.000-07:00

Based on feedback from my last post, I wanted to expound more, and I replied to a posting on the forum ThisIsMS.com. It has a lot of educated about CCSVI lingo, but most of it is easy to follow. I'm copying and pasting it on here basically because I'm lazy! So here it is and it should dispel any thoughts of me sitting around crying in my beer! This is a response to other forum members being concerned about what is happening and also having fresh doubts about the merits of this procedure. Here it is:

Hey I'm flattered as hell! Most of the time when folks are talking about me it isn't so flattering! lol. At any rate, keep in mind that I'm still walking WAY better than I was before the procedure. Way better. No cane and no limp until I walk a good distance. Don't forget I needed to be wheeled through the airport the first time out. All these comparisons are from my new baseline which is significantly higher than it was pre-procedure.

But the stuff I posted about is real. The new clonus, the dragging the throw rugs around and tripping over 1/4" high thresholds, plus leg weakness on the left side; mostly in the hamstring area. It's there for real but I have to qualify it a little better at least in terms of my interpretation of it.

Since I'm known as analogy boy, let's use the floods in Nashville as a reference. Let's say your house was underwater for days and days (active MS). If it stayed underwater it would be considered to be 'under attack'. But let's say the flood waters recede. Your house is still standing and the source of the active damage is gone. Is your drywall in good shape just because the water went back? Are the water stains and water saturation and actual damage going to go away? No, it's now waterlogged even though there is no more active damage. And it's deteriorated and will not fix itself just because you took the damaging force away. And it never will. IT NEEDS REPAIRED. That's my CNS. I don't have inflammatory MS (RR). I have SP, so there's damage that doesn't go away when the inflammation is removed.

So I'm now aging with weak drywall. It's going to deteriorate naturally much faster than good drywall would have. So I suspect there's some of that going on. To be cliche, it is what it is. My nerves that are damaged are aging more quickly than healthy nerves age. So as many of us suspected, if you have an actual damaged CNS, and not a CNS affected by inflammation, you're going to need Step 2; repair. Is it stem cells? Is it something else? No one can say yet as this is, as Joan has pointed out, new stuff; we were guineas of the highest order.

My spirits are good. I'm pissed that I didn't get the results of people like Rhonda and Mel, but I don't begrudge them one bit. The flood waters were at their doors, but still behind the sandbags. So when the waters receded, the symptoms did too. THAT IS AWESOME NEWS. Why? Because maybe if CCSVI gets researched to death, it may become the first thing you do upon diagnosis. Then maybe nobody has to progress to progressive and deal with the damage that has already happened to me and all of us SP'rs and PP'rs.

I am absolutely grateful to have been a part of this. I am now in the camp of "I've done everything physically possible to beat this disease", it's just that everything possible still isn't a cure and a fix.

BTW, I was on Tysabri and progressed the WHOLE TIME, so there will be no talk of me going back on that crap. It didn't work; period. Hell, they even tell you it won't work when you're progressive so this line from LeAnne:

"Lew stopped Tysabri medication after he had the CCSVI operation and my feeling is that maybe we need to stay on the meds until we know the true impact of CCSVI. It may be a case of CCSVI and meds together to beat this disease."

isn't really anything I'd even remotely consider because why pump myself full of high priced poison (my opinion) if it isn't working? What's the definition of insanity? Doing the same thing over and over and expecting different results. It simply didn't work and I'm not going to stay on drugs that aren't working. It doesn't even make a modicum of sense. If there was even an inkling that it worked, I'd never have stopped it. Read the Tysabri book. The big marker for using Tysabri is to keep you from going progressive or getting past EDSS 3.5. I was a 4.5, so I shouldn't even have been on it in the first place. Maybe it helps RR patients, but it didn't do anything for me except drain my wallet.

The visit to Dake is going to be telling. If he says my jugs still look like McDonald's straws, it won't be what I want to hear, but it will reinforce my theory about aging with damaged nerves. You have to remember, my most recent active symptom when I was sliding was all things left leg, so it's not surprising in the confines of my theory that it would be the first thing affected. However, let's hope he finds some new area of stenosis, or has better insight into the azygous. We DID check my azygous very robustly last time and it was flowing well. Maybe it's the membrane thing that Simka sees. I don't know and neither does anybody else really. If there's flow, it's working right is all I can say. I suspect my theory is right.

And remember one thing. MS sucks and it makes your life hard. BUT it is still simply that; life. This is my life. Michael Phelps' life is his life. No one said all our lives are the same or be at the same level of suckiness. I have this to deal with. Life is harder, but I'm still alive and still searching for what makes me happy and content just like everybody else, healthy or not. How can I "woe is me" this? We didn't know if it would be successful or not. So we were just hoping it would work. That's it, that's really it. If I start deteriorating more rapidly again, guess what? I start all this madness over and move on to the next thing if there is one while I'm still around and kickin'. That is doing all I can and we all need to. The more you learn, the more you realize that you shouldn't do anything your dr. says unless you agree with it also. That's what comes with having a disease with such poorly understood etiology. They don't know shit about this disease, only what they are supposed to prescribe you. Call that an opinion or a fact, but it's obvious no one knows enough about this disease to be super confident recommending ANYTHING.

Update

2010-05-23T15:59:00.000-07:00

Well I haven't posted in a while, and this one isn't going to be that long either. I feel OK is the best I can say. My demeanor, my dizziness, my bladder, bowels, all the functional stuff still feels unchanged. My legs, however, don't feel unchanged. They feel weaker. Now it's only slight and I'm still not using my cane yet, but I know for a fact that I can't walk as far as I could even 3 months ago. This sucks bad, but I still know I did SOMETHING to get in the way of the slide I was on. I just know that things are getting slowly worse in my legs now. It's been a while that I've sat on this and now I have to say it out loud. Not what any of us want to hear, but reality is reality. I'm still working and living and all that good stuff. It's just things that I did easier for a while after the surgery are becoming harder again. The heat is starting to really bother me again too.

I hope to post more after I've really pontificated on it and done some self run experiment type stuff, but I haven't posted in a while and this is why. It's not a virus or a 'bad spell', it's just that my legs are getting slowly weaker and I promised to be honest, so here I am doing that. The things that make it obvious to me are things that I've not experienced yet. I was very hesitant to post about this until there was something new happening, not just waxing and waning of existing stuff. Well I can't put my sock on my left foot by pulling my left leg up anymore. I have to pull it up with my left hand and wedge my heel on the bedrail or on the chair I'm sitting in. I can't hold it up even for 2 seconds to throw a footie on. And I have to consciously watch lifting my left foot high since I've been catching it on the flat ground, denoting the start of foot drop; which I've never had. Also if I'm sitting and I raise my toe off the ground and then push on my knee, I have some pretty hardcore clonus. All new stuff.

It's not like I'm sinking into the pit of despair or anything. As I said before, I still feel better than I did pre-surgery overall for sure. It's just that my legs are getting weaker and that is decidedly not a good thing. I don't have my limp back until I'm very fatigued and that so I know I'm not back to where I was pre-surgery. My one year checkup is coming up in mid-July and I hope to God Dake finds something. I don't want the 'all clear'. I know he can't do something surgically for me right now, but just knowing that there's potentially a reason for this would be great. But as we've talked about many times before, the progressive camp is/has been/was/always will be, sucking hind tit to relapsing and remitting. So I now have to start working on letting myself feel joy when other's not so afflicted get great results from this instead of turning green with envy. My mind is a bit scattered right now, so I'm going to cut this short. As I said, I'll post again soon when I've got this all sorted out.

Thoughts on exercise and MY MS

2010-04-30T17:18:00.000-07:00

I capped MY in the title because we all know each of our own conditions is unique. I mean when you think about it, it makes perfect sense. Random location of lesions in your CNS, and peoples' Central Nervous Systems are totally unique to each individual. So anyway, my personal thoughts on the value of exercise in progressive MS is sort of against temporary conventional wisdom based on what's going on with me. The conv. wisdom is that exercise is nothing but 100% positive for MS. That is mostly true, but not completely I'm convinced now. Allow me to elaborate (I hate elaborating...).

When your CNS is already "under a load" dealing with MS, I'm not so sure it is really good to push it past its' capacity. By that I mean that just doing mild exercise like light weights and walking (maybe it's just low impact that's the key) makes me feel markedly better than trying to exercise strenuously. I know, I know, I have a tendency to push that shit. But this time I really have not. Ever since the infamous roto-tiller incident, I've pretty much learned my lesson. I have taken it slow and worked up to trying stuff at what I consider a snail's pace. Maybe my definition of a snail's pace sucks, but I'm talking slow. But when I do it with much lower effort but for longer periods, I feel better, I can function the rest of the evening and all that good stuff. It was, of course, utopia when I was temporarily unemployed, but we couldn't have that while I'm still able to work, so that vaca. was way too short! I mean exercise is not a 'building activity' anymore. It may be cardio, but I haven't pulled the trigger on something like an elliptical or stationary bike yet so I haven't foud that out. Since that's a system and not a muscle, I imagine cardio can be improved, but everything is controlled by, in my case raggedy-ass, nerves.

Quick sidenote: I just snuck into the hall and watched my daughter through a crack in her door jamming on the bass. It's amazing how good she's getting; it's freaking me out in a cool way!

So I feel much better than I did a few weeks ago. I just only have so much energy and work is a must, so, for now, I must do that. It doesn't feel like it's at odds with taking care of myself 100%, but it just makes it harder. That's what this shit really is right now. Through no fault of your own, life just becomes hard as hell. I know why, sure, but it sucks eggs. It is a decidedly eggsucking activity this crap is. What it comes down to mainly for me is that my knees end up hurting so bad it makes me limp, which makes me tired, and so on and on. So as I'm writing this I'm talking myself into an elliptical machine. I've been saying that for a while now. I just need to do it but I hate to spend money right now. Putting just one kid through Catholic High School has put a dent in my budget, well actually it's the economy stupid!, but I digress.

I just needed to talk about that as I promised to blog about my adventures in exercising and I haven't, so now you know. I was getting discouraged, but I just do what I'm able and need to quit guilt tripping myself. That's probably why I'm writing about it. I seem to need to write it down to take it in when it's a self taught lesson. Well in the words of Forrest "that's all I have to say about that".

The weekend

2010-04-17T12:52:00.000-07:00

Well the weekend is here and I did keep up my exercise like I wanted to. I did not jog my 1/4 mile last night as I was scheduled to, but I did other stuff. The jogging, while very 'soul satisfying', may not be the best way for me to exercise...yet. As I explained a week ago, it's not my muscles so much now that won't go. It's the damn knee. It is killing me! Also my hip to a degree and I'm 99,9% sure it's because of an irregular jogging gait. Just too herky jerky, and thus too much of a pounding to my joints. So I went out back and picked up all the huge pieces of lumber from the tree that got hit by lightning the other day. That was a trip let me tell you. The tree literally exploded and sent wood all over the back yard. About 1/2 of it's still standing, but that dude has to come down! Then I mowed the back hill. I could not mow the back hill before the procedure. Parts of it are quite steep whereas if you are cutting in one direction, your hands are literally up at eye level as you are pushing it uphill. Well I did it ninety degrees opposed to that, but it's still a bitch, and as I've said, something I was incapable of before.

And the great part was that I was absolutely drenched in sweat. I loved that part. When you are used to a soaking sweat on a daily basis for probably 20 years, not sweating for a long time makes you wonder whether you can still do it or not. I mean really. So overall I'm keeping my effort up and working the upper body and running all over the place in little jaunts like to the port a john at my daughter's soccer games! The grass is more forgiving and I only go about 100 yards or so, but I do jog it, and that feels really good. I just can't road run until I get a steadier gait. I hope it happens, but if not, I'm doing other stuff now like yard work. That kicks ass. Yard work is something I totally enjoy, but haven't done for a while. Regular readers of this remember the 'roto tiller incident' right after I had my procedure. I think I could do that now just fine. It knocked my dick in the dirt right after my procedure, but I wasn't even recovered from the surgery yet, so it was a dumb move as it was really pushing it. But I just love being able to make plans and get excited about DOING stuff. Going out, things like that which I had quit doing.

So a quick update, I didn't want everyone to think something had happened and I had slipped back. Not able to keep up with jogging, but that's only because it's murder on my knee. So I'm simply exchanging jogging for other stuff! I'll update in about a week if I think I might actually be getting back into a little bit of shape.

2 days later

2010-04-13T15:01:00.000-07:00

I decided to post again every other day for quick updates. I know my last two posts have been chock full of positive news. I'm still feelin' it but for fellow MS'rs, I wanted to keep it going. You see running (it's kind of funny to call it that, I'll make a video once I borrow a camera) sounds impressive, and from where I was a year ago, it is. But the caveat here is it needs to stick. In other words, running a 1/4 mile one time and then not being able to run again for a week is not what we're after here. With MS, everything is a test; everything. Did getting up from that chair make me dizzier than yesterday? Did walking down the hall at work make my eyes go foggy yesterday? You are always on the lookout for things to get worse so you can go get 'roids, or you are looking for things to get better which means maybe you're stabilizing.

Well now after the procedure, I'm also looking for improvement. So running Sunday means I have to try and go at least as far as I did then on Tuesday and keep it up every other day. If this happens, I'll put a notch in my own belt. Well I did run the same 'course' again today plus about 100 extra strides. I actually could've kept going muscle wise, but my feet weren't coming off the ground very far and I thought I better stop less I fall. When you're foot is scraping the sole on the stride bringing your foot from back to front, that's a sign you need to start lifting your feet higher if you can. Well I'm not coordinated enough to do any high stepping, so I walked about another 1/4 mile and then did 10 sit ups and 10 push ups and 10 jumping jacks.

The report after just one tiny, little run on Sunday? Sore legs and ass for starters! BUT, and this was huge for me, my dizziness was basically gone all day Monday and today. That's what I'm talkin' about. That's what used to work, and it worked again despite not getting all hot and sweaty.

So I'll post for a while every other day. It's hugely significant if I can keep this up. Hugely. I would start to exercise last year, and I just couldn't maintain any of it. It was just too hard and too depressing to just keep failing on doing such strenuous things as, oh, a few deep knee bends. I'm definitely past that point so I think I can say I'm most definitely at a better baseline. I'm not healed or not "MSy" by any stretch, but being able to string two exercise sessions with my lower body together is just awesome for me. I hate to say it, but it is sort of a panacea for what ailes me. Anything that can take dizziness away and doesn't say "Antivert" on the bottle is A-Ok by me. That antivert sucks. Sure you might not be dizzy, but what good is that when you can't keep your flippin' eyes open? So I'm off to make dinner (we're having Chinese takeout, mmmmmm) LOL! I'll post again on Thursday whether I could do it or not. And I do know someone with a Flip camera, so a video of me running will be on here soon. It ain't pretty, but hey, I'm OK with that if I can keep it up and keep the dizzy monster away.

A couple weeks out-still hanging

2010-04-11T08:49:00.000-07:00

And I think it's because my old friend dizziness/vertigo slipped back into the picture about a week ago. I'm still feeling good enough to go out and watch live music on a Saturday night until midnight (big stuff for me), but vertigo kind of makes you feel like everything's out of whack. You just want to close your eyes and sit there. It's especially bad for me right now since I have the energy and leg strength to want to do more. It's just that when you're really dizzy, activity makes it worse so you try to 'hang on' and not make yourself dizzy. I mean it takes so little you're even cautious about turning your head too fast. Well my answer to literally everything in the past (especially dizziness) was to "push past it" with physical activity; specifically running. I'd start my jog and I'd get dizzier, but then it would start to abate as the sweat started to pour.

That quit working when I lost my ability to work up enough cardio to even make myself sweat. Not coincidentally, that's when the dizziness really kicked into high gear. So now what do I do? Am I experiencing progression? I don't feel like it, but I can't say no for sure. However, none of this is new stuff. It's just old stuff re-appearing. So what did I do? I tried to run! And I did go about .25 miles doing something that sort of resembled a running stride. It wasn't pretty let me tell you.

Besides the South Park shorts, I probably looked like I was doing the "Thriller" monster dance, but I really don't care. I could do it, keep it up for more than three strides, and it actually did help to abate the dizziness somewhat. It's not 100% gone like it used to when I really could work hard, but maybe, just maybe if I keep it up, I can get to a full mile. .3 is next up. The only thing that really blows about doing stuff like this is that it's not just how strong your legs are that comes into play when you want to start running again when you have MS. It's the leg pain, the foot pain, and everything else that goes on with your legs. If it was simply being weak and not having muscle development, I could push past that. The other stuff at times will make it hard to walk let alone run. So I'm very pleased I could go that far (a whole quarter mile!), but now I really hope in two days my knee won't keep me from continuing. I'd love to be able to make this part of working out. I'll sweat yet this summer from something other than laying in the sun and overheating.

So it's not like the good times just kept on rolling after my last post. I have pretty much stayed right there, but I have to note that the dizziness returning like it has, has got me disappointed and upset. It's not like I can just say "I wonder if my veins re-stenosed?" and just go down to the hospital, get checked and my veins cleaned up. That's the pisser of doing this so early. So glad I did since this all seems to be a process of people starting this, seeing a small number of patients, and then stopping again as they get paranoid since this is not a proven fact yet. Well guess what? Neither are the MS meds. They are far from proven fact in their efficacy as well. Watch this TV special

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100409/w5_liberation_update_100409/20100410?s_name=W5

it's very telling. I mean people will let us pump ourselves full of, let me say it again, UNPROVEN drugs that are toxic, yet they won't let you open an occluded vein? That's just not right in my opinion as they've been ballooning veins that are stenosed for years and it's extrememely safe. Now the stents I have in are not considered so safe, but people are stopping ballooning because of newspaper articles. This pisses me off because when the MS "wonder drug" (eye roll) Tysabri was first put out, it killed a few people. Patients clamored and it was put back on saying that it was done "for compassionate reasons". Well you can do this surgery for that reason too. The one guy in the video doesn't think you should even be checked, but all you have to know is the loose connection with the efficacy of these drugs to know there's not much of a connection there either.

So it's perplexing that I'm getting dizzy again. BUT A) that's not a new symptom, and B) I flippin' ran a little bit and it helped. So once again, I have to note that with secondary progressive MS there is damage. So I may just be stuck in this kind of limbo where I almost really feel solid, but I can work myself up to feeling pretty bad with not much effort; still exhibiting many MS symptoms. That sucks, but man oh man does it beat progression. I can walk and go out and even run (well it looked almost like running) for a little bit. So that has me on the upside of down and the dropped toast is butter side UP today. I've got a lot to be thankful for, and pragmatically, not much to be sour about when you think about where I could be right now had I not had this "unproven and untested and only supported by anecdotal evidence" procedure done (like I give a rat's ass Dr. Freedman). I'm glad he (the skeptic in the video) has my best interest and safety in mind. However, that argument really only holds water on dangerous procedures and drugs. It doesn't hurt to go in and baloon these veins. Just watch the video and you'll see the vascular surgeon talking about the safety. So him being skeptical would not nearly look so smarmy if he said "I totally do not agree that there is any connection to MS, but if you want to balloon your veins, go ahead, it's your dime". Instead he looks like he has an agenda since it's not dangerous to test and balloon and he is cautioning against people doing it, but he'd give you a prescription for a known dangerous drug in a heartbeat. Oh well, he probably thinks he has to save us dumb masses from our uneducated selves!

captured that healthy feeling if only for a moment

2010-03-27T07:09:00.000-07:00

And it was wonderful. No matter how many times I temper my expectations with reality, or even a little pessismism to not allow a big fall, it's clear that any chance at 'getting back' some of your healthy life is the utopian goal. And the only reason I say that is because those times you catch a glimpse of normal health, you can't help yourself. You have to keep your feet on the ground and be realistic, but we all want it no matter how content we are with stopping progression. Now for everone I imagine that's something different. For some people it would to be back working full time and being able to fully engage physically and mentally in whatever activity you want to pick. I had a morning today where I felt absolute peace of mind. Felt really good about the world, felt confident and all that stuff that I used to take for granted. MS is always in the way of that. If you're driving somewhere, you stress about is there going to be a good place to pee. If you're walking somewhere, you stress about being able to make it as far as you want to go. If you're just with people, you hope you have the energy to stay engaged and not start getting dizzy and confused and in pain. That's just how it is for many of us and it really gets in the way of finding your peace of mind and feelings of contentment and feeling just plain happy about being where you are and doing what you're doing.

This morning, and I think once again the exercise is starting to pay off, I captured some of that and I wish I could bottle it up, but also hope there's more to come so I won't have to! For me, one of those things that always made me feel all was right with the world were the weekend mornings. I've always been an early riser and I would spend lots of time focusing on things like exercising or taking all the kids to soccer or something like that. I used to get up at about 7:00am on Saturday or Sunday morning and go play a few hours of racquetball, or go for a good run or something and be done before noon and be fully awake and engaged and feeling wonderful. Well the MS has made it so I haven't had a day like that in I can't tell you how long. I still get up early, but by the time I have the coffee made and things like that, my legs are usually hurting so bad I'm not only not enjoying the morning, but I am definitely not thinking about going forward and doing anything else. It's just a trial to wake up and start moving forward and doing what you want to do.

This morning was awesome. I woke up and the sun was out and I didn't feel all that bad. Well I swing my legs out of bed and hmmmm, they aren't hurting that bad. Cool I think. They will be soon but Sarah has practice this morning and I'll go down and make the coffee and eggs and then find a seat because they are always hurting and I'm always a little dizzy at this point. It didn't happen this time. I just kept 'doing it'; standing the whole time pain free. I made the coffee, no leg pain. I made the eggs, no leg pain. I even had to go down the dreaded basement stairs to pump up her soccer ball. No problem. So then I decide I'm going to offer to be bus driver and collect all her friends and drive; I never do that. By the time I get her ready I usually just want to sit or lie back down. But today I didn't. I went and collected them all. We laughed and joked because I wasn't just thinking about getting back home and getting on the couch! So I dropped them off and sang at the top of my lungs on the way home to some Chili Peppers and just felt 'normal'.

It's that kind of stuff that means more than anything when you think about getting better. Just being able to live life happy and not constantly distracted by your challenges. To take care of myself in the background, but not be obsessed with taking care of myself to just have enough energy to enjoy SOME of the day. No matter how hard I say I'm OK with just not getting worse, and believe me I am; it beats the alternative, in the back of my mind I will always want to get 'better'. I think that's just human nature. Well this morning I did feel better. That's been a long time coming. So the next time you're driving down the street feeling good about life with a smile on your face, take some time and think about how lots of people can't do that anymore. For one second don't take it for granted. Just to be 'normal' is all we want. I don't care if I run the Boston Marathon. I just want to live life not constantly distracted. And, to me, without having done this procedure, I don't know if I'd have had a morning like this morning. So just being able to get up, feed my daughter and take her and her friends to practice a 1/2 hour away just made my flippin' year. Lowered expectations? I think not, feeling healthy is a beautiful thing, it's a gift. Try and make the most of your life if you have your health, you're selling yourself short if you don't. And the next time you are just doing something 'normal' and feeling irritated because something totally insignificant in the grand scheme didn't go your way, just look in the mirror and try and feel how wonderful it is that you have your health. Totally, totally cliche, but it's truly priceless, it really is.

I've put a picture of myself this morning on here because if you can go in public when it's 40 degrees out dressed liked that and still feel good, well then you are just feelin' it! Ha! I feel it's the boots that complete the ensemb', don't you?

Homeostasis

2010-03-22T08:17:00.000-07:00

I do believe a fair amount of homeostasis has been achieved in my illness. I say that because I simply feel the same and I really do know what to expect from day to day in terms of how much effort I am going to be able to expend and all kinds of stuff that I've now adapted to since things simply aren't changing that much. My buddy Mitch, who just had this done in Brooklyn, had this to say and it says what the progressive MS'er should expect from this perfectly:

"I feel the same as pre-surgery. If I can keep saying that for the next 40 years, I win."

I know I have pounded this point into the ground. It's as much to temper my expectations as it is to let everyone know that this isn't a panacea for MS. Every case is going to be different, and I personally believe much more will be revealed about the role that fixing this condition will play in recovery. I can't say what role that is because I don't know, but I do know that I pay attention to what people who just learn about this post on the internet and nobody will be able to say I'm a purveyor of anything but realistic expectations.

My legs still hurt and I have walking issues all day every day to varying degrees. But they aren't getting worse. They are just there like if I suffered an injury or something like that; an event if you will rather than a process of constant degrading. I've been exercising every other day now for almost 4 weeks. It's been a real mixed bag I'm sad to say as I had HOPED that I could work a bit and start to feel like some repair has taken place. Well I'm a tail of two halves, my upper half and my lower half.

My upper half is responding very well to working out. As those of you who follow this know, I had a pretty badly damaged spinal accessory nerve and it kept me from working out with my upper body for about 9 months. So I know things are working because I have better range of motion and in the 4 short weeks I've been doing it, I've been able to steadily increase the weight I use. This doesn't seem to be the case with my legs. I work them out with the same intensity as my upper body, but it's not having the same effect. I'm still using the same amount of weight as I was when I started; and the same amount of reps. I just don't seem to be building strength. It could just be that it's going to take longer, but I will report on that in a few months because I don't plan on stopping.

My theory about that is what it has always been. My nerves that control my legs are damaged. They are only capable of carrying so much signal because of that damage. And if you didn't know, if you aren't getting good nerve impulse to the muscle, you can't grow/build the muscles. BUT the whole shitty part of MS is that the signal is constantly worsening and that's why we just lose more and more function and muscle as the disease progresses. So if my nerves aren't constantly degrading, I should be able to maintain my current level of function, and maybe just maybe if I keep it up, I will get some strength back. That will be cool, but I don't need to be setting myself up by actually expecting that. I can still walk enough to work full time and be fairly social. I can't take any sightseeing tours or go to museums (unless of course I want to use a power chair, which I have done and will continue to do when needed) or sporting events, but BFD concerning that.

So even though my muscles in my legs don't seem to be building strength, this whole time of non disease activity has gained me some ability. I can take socks off and on while standing. I can dry my feet off without sitting down, and that's really been nice to feel so stable. It is going to be constant maintenance however for the rest of my life. One thing I have found out is that if I don't exercise my legs, they will get weak very fast. I mean every one's do, but this is a little different! So it is up to me to stay in the shape I'm in and I'm very grateful for that. I'll take that 100 times out of 100 when compared to getting weaker despite exercising; which was what was happening before.

On the other hand, it's awesome that I am able to build strength in my upper body. Waiting for that nerve to heal was a definite trial. For that to be done, ie the nerve is healed, is like winning the lottery. I had really thought in the back of my mind that maybe that wasn't going to heal right and I was going to be a tale of one, low functioning half!

So once again my post is kind of blah and boring as not much has changed. That seems to be a recurring theme and I'll just point to my pal Mitch's quote above. He said in one sentence what it's taken me volumes to articulate! It's been up and down of course (imagine that, just like "normal life") and there are times I get bummed about what I can't do. But to not keep adding to that list is wonderful. So yes I will need to stay on top of my exercise probably forever. But I was doing that in my life anyway. I worked out for 20 years when healthy without straying too far off the routine. So I can do this. I don't have as much energy to do it of course, but if I want to keep myself functioning as highly as I can, I just have to. This is still the best thing I've ever done for my MS and there isn't even anything on the radar as far as what's in second place.

So this post is only to let everyone know that my absence on here as of late is not due to something bad happening, it's just that not much is happening in terms of progression or static improvement. I feel like the improvements I've been feeling as of late are mostly due to the exercise. In other words, the disability I still have doesn't feel like 'active MS' anymore, it just feels like (hopefully) leftover damage. So hopefully I just keep boring you all to tears. Bad for laypeople reading this, but great news for anyone with MS!

Just had to post about this

2010-02-05T06:23:00.000-08:00

In my never ending quest to reinforce that I made the right decision, I give you this press release by the University of Buffalo. Looks like this is gaining steam despite the efforts of the neurology departments at places like Stanford who don't like anyone playing in their gold plated, MS sandboxes.

Here it is and I think it will excite many of you!

http://www.bnac.net/wp-content/uploads/2010/02/bnac_newsletter_02-04-2010.pdf

Time to blog!

2010-02-04T16:11:00.000-08:00

Well it's been about a month since my last post I believe. I was completely energized to keep this bad boy updated weekly right after the procedure. Your energy is high, expectations are high and hope is abundant as at the same time you're looking for improvement, you're also recovering from surgery. As I've stated in previous postings, my feet have come back down to earth. The other thing going on is that I'm really not changing much better or worse and weekly updates are simply too frequent. I want to talk about that further and how that is bad on the hand that wants to run and be as physical as I used to be, but it's an absolute Godsend on the other hand and in the big picture of secondary progressive MS. The key word obviously being progressive. I am not changing much either way, so that means no progression is going on either. I always hate to actually state that. I'm about as superstitious as a rock, but this is different. When you say it, you acknowledge that somewhere that's kind of in the back of your mind. I really don't know, but I do know how I feel. And since my last post had a bit of angst about all of it, I thought I'd lay out all my shit and talk about how it was before and how it is now. Since I've been feeling the same for a while, this will be good for me to. I say that because literally EVERYBODY tells me I look and move like I'm lots better. The big thing I always have to keep in mind is that Dr. Zamboni's SP (secondary progressive) patients showed no real appreciable change after 18 months in the positive direction. It's been just over six here and really just over 4 since the left side stents were placed. I will break for a paragraph here for my good buddy Jamie!

Since Dr. Z's SP patients didn't show much after a year and a half, I also need to point out one other fun fact. He didn't stent. He ballooned. And the restenosis rate was pretty high; somewhere in the neighborhood of 45% if memory serves. That's a lot of peoples' jugulars just occluding again after they were opened back up. Well I have things (stents) where my stenoses were and they aren't restenosing. So I think I got the goods if you want to know the truth. So let's run down the list of stuff that MS has done and I'm going to talk about how it was before and how it is now. I'm going to have to be brief as you know how windy I can get. Here goes.

First a list and then itemized on how it all is.

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all)
Stiffness (ha ha right after that!)

First off Optic neuritis. I am not going to explain it all, so I'll try and put the picture of EXACTLY what it looks like when that flares up. If the pics don't post, I'll put a link you can click. When I get hot, and before the procedure about 10 times a day, this is exactly what it looks like looking through my eyes:

Ok, that kicks ass that I figured that out. At any rate, it has improved... alot. It doesn't happen at all some days, and when it does, it's not as severe and it goes away very quickly. So when we're done, I'll write the list again and tally up who's winning this bitch.

Next chronic constipation. Fun subject, but people with MS will be interested since it sucks to be constipated for 8 years; no shit (rimshot). Well that has gotten better I'm glad to report, and once again, this has gotten lots better. What MS does is just slows down the parastalsis so much that all the water gets wicked away and you can figure the rest out. Well it's been good here for about the last two months. I'm a happy dude.

My fucking bladder. Can you tell I hate this one? Sounds pretty benign and like a nuisance. Nah baby nah. It rules my life and keeps me from doing SO many things. When you have overactive, you can take a pill, BUT, not if you have the dissynergy thing. See when a normal person pees, their bladder squeezes, the urethral sphincter opens up and once the bladder is drained, the sphinc. shuts again. In my case, I get about 4-6 oz. out and then it shuts again. Not working in concert, thus dissynergy. So I always have a couple hundred milliliters of pee left after I pee. This really sucked at night until I started IC'ing. That means intermittent catherization. Not the kind you see on old people where the dude is just up in there and stays, but something I like to call "the pee straw". Sounds pretty scary huh? Well it's a Godsend if what was happening is that for about, oh, 4 or 5 years I only got about 3-4 hours of sleep a night as I would get up to pee about 6-8 times per night. That's for real folks. And you can't go anywhere. It makes your world very small. That hasn't changed I'm sad to say. But now that I'm cathing every night, I do get way more sleep. It just sucks ass all day long as I pee literally about 3-4 times an hour. I usually take a couple hour break in the afternoon, but I can't take too long of one since I can't drink after 8:00pm or the cath process will wear off by about 2:00 am and then it's up and down until the alarm. So this one sucked before and it still sucks.

Balance problems. Exactly what it sounds like. I bounced off walls, ran into everything, and dare not get tipped past about 2 degrees from perfectly vertical or it was 'pants on the ground'. At work they called me the "wall walker". I walk down the hall now and only hit it maybe twice, if at all. So my balance isn't back to 'normal', but it's better.

Vertigo. Another one I almost qualified with the F word. When you have this transiently, it's tolerable. When you have it for years, it is horrible. You can ask anyone who knows me if I didn't used to eat like I was at boot camp (turbo fast) and with my eyes closed. I didn't enjoy food for a long while. I still get it from time to time, but it's not usually as intense as it was, and it's so infrequent when compared to 24/7.

Foot pain. It started out feeling like I had a roll of quarters taped just between the ball of the foot and my toes. Then it went to just plain foot pain. I wear hard orthotics (they do have a little padding) all the time now and I can't walk in barefeet. I can from my bed to the john, but more than that and I usually actually wear my boots. It's pretty hot let me tell you ;-). That really hasn't changed much either. I took them out about two weeks ago and just put in the insoles that came with the boots and after a couple of days I couldn't take it anymore. Plus it travels straight up to the calves and makes them weak and hurt.

Leg pain and weakness. These are not mutually exclusive by any stretch, so they get bunched together. It's a weird feeling. It feels like I've been caned in my calves. That's the only way I can describe it. Like a charlie horse if you will, but not as intense. The spasticity makes this worse, so it probably belongs in here as well. This really hasn't changed, although my gait and is so much better, you wouldn't think it. But it's really strange. I don't need my cane ever anymore, but I really can't walk any farther. When I try to go a 1/2 mile or so, by the end I'm just barely picking 'em up and putting 'em down. But I guess I have one thing that has gotten better. When I do need to walk alot at work, I recover so much quicker. That is a very good thing.

My gait is so much better. Not needing the cane goes hand and hand with this. Those are just enormous as I have so much less hip pain. My knee still hurts like hell almost every day, but it doesn't make me limp anymore and it used to.

Sex issues. I won't go into details. It wasn't full on, but it was on again, off again. All I'll say is I'm glad my wife was a good sport! Now it's still not like I'm 18, well shit, I am almost 44, but that is better too. That's also a very good thing.

Stiffness. This is a weird on because this is the only one that I feel is slightly worse. I could also be this God forsaken winter we are having too, but I just feel like this has gotten slightly worse. I haven't exercised like I should either, so that may alleviate that. We'll have to see.

To so "tally it up":

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

So that's six better, 5 unchanged's and 1 worse. Although I always need to remind the part of myself that wants to be better that unchanged is great. It doesn't always feel great because these things still are very much a part of daily life. But when I think back (it really does feel like a long time) to before the procedure, I was really desperate. And if I would have kept getting worse at the same rate as I was, I don't even know where I'd be, but it would be a hell of a lot worse off than I am right now. So I am just very, very grateful every day that I did this. I still have that part of me that thinks about "Flowers for Algernon", but since one of the good things I developed is the ability to live day by day, I really like the fact that I can actually be pissed that I had to work late tonight. About a half a year ago I wouldn't even attempt to work late. To be truthful I probably wouldn't be working at all.

So there's no question that I'm glad I got this done when I did. A good friend, who also had this done, told me the other day "if it is to be, it's up to me". So when the weather gets just a bit warmer, I mean shit it's in the 20's right now and I just shut down, I'm going to get back outside and push myself a little bit. Bad things happen when I push too hard. I seem to end up doing that anyway, but I need to be smart about this. This really has become my muse about whether or not this has worked for me or not. I still honestly can't say since I'm still so limited. But I can also still do a great deal since I am still on two feet and you don't have to be able to walk a mile to live lots of life. As long as you can get around you can do a lot. I think I'll keep this up probably every month or so unless something starts changing; better or worse. I hope this really help people understand the effect that the CCSVI procedure has on a person that has MS. I watch a lot of people really go batshit on this and they think it's a cure. This has a long way to go if it's ever called that. But I do feel very strongly that it's done wonders for me. For real. I'm so glad I got this done I can't even explain it. But I just want everyone to know that I still have MS. It doesn't seem to be doing anything right now in terms of advancing, but I still have plenty of symptoms as I've described in here. So I'm going to sign off now as I could just keep carrying on about that. It's just basically saying the same thing a bunch of different ways so I'll stop! Until next time..

2010

2010-01-08T08:29:00.000-08:00

It's a new year and I'm feeling pretty philosophical which means I need to write. I think I'm just a bit war weary as it were. No I don't mean to compare my situation to our men and women in the military. I'm talking about the personal, internal war that all of us wage every day that have incurable shit. It's a struggle between normal life and the life we now must begrudgingly lead. The life we want back vs. the life we now have. The happy life I had vs. the daily grind it has now become. Things that torment me are things like "how do I keep my chin up?", "How do I find joy in the things that have always given me pleasure?", "Are the things I love even possible to engage in anymore, and how the hell do I fill the void that is there that used to be taken up with those things?". "How can I be happy just 'being there'?, not engaging in life on a physical level?, not pouring energy into things anymore as that is how they were gaged in terms of how much they meant to me?"

The answer to those questions I'm now finding out is now what is called LIFE. I'm not in control of it anymore. Was I ever really or was that just a facade? So the struggle to find those things that make you feel at peace and relaxed and OK with the world are really just the life that I now have (and frankly so does everybody). I imagine it always was, but I didn't perceive it that way as I felt I was in control of anything I wanted to do. It just involved an active decision to decide to put the energy into it. I think that is the rub. The juice just is not there to do those things anymore. So now how do I turn off all those 'drivers' that were the markers of my being happy and content? It took me a lifetime (what I've lived so far) to develop those desires, tastes and preferences. So I have to re-write them now?, but the catch is it now only involves those things that can be done from the seated position. Those things that can be done within a hampered ability to walks' distance from a bathroom. Those things that don't involve too much energy lest I get dizzy and disoriented and unable to focus on what I was about to put the energy in to. Are you fucking kidding me? How am I supposed to do that? I'm not equipped to do that. And all the books out there on the subject are filled with all kinds of stuff. But most of them are written by people who can choose to pour 100% of their energy into their wellness; IE, they usually have means. I could be so lucky. I still have to work and be a Dad and be a husband. So what happens is the best laid plans of mice and men get shoved down as doing those three things doesn't leave a lot of time to eat how I want. To rest how I want. To do things other than just what it takes to get through a day without falling (literally and figuratively). It makes you sour when you get all fired up do start doing THIS or THAT because you know it would result in a better outcome in terms of overall well being.

But then you only have the energy and time to just get by each day without doing any of the great things you know you should be doing. How do I come home and cook a really nutritious meal to help my new dietary goals when I can't stand in the kitchen for that long after work? How do I learn how to cook it to make it palatable when I've spent my whole life learning other things like how to run a plant and how to be the sole breadwinner in the family? I could do it after some substantial rest, but what do I do about not being able to drink fluids after 8:00 at night lest I piss the bed, or at the very least, have to get up multiple times to pee? How can I be a role model for my daughter when all I can do is come home and plop after getting some takeout? I want her to be talking about how proud she is of me for "doing it all, even though he didn't have the get up and go", like you see other kids who have handicapped parents when they express how it gave them such good lessons. Maybe me just being able to do what I CAN do is enough. Maybe she already sees me just going to work every day and trying to participate in her life as that.

I don't know but I know these are the things that I have been thinking about when pondering how it is I'm going to approach 2010 and not give in to the fear. Every year it gets harder and harder because every year you have less and less energy to deal with it. Of course that's also true as we age, this is just that at an accelerated pace. And I DO feel fairly stable since I've had the procedure. I've been dealing with some sciatic nerve stuff that has scared me because us MS'er think of any ache, pain, or tingle as MS. This is not, but it is a nerve based issue and it's really been a distraction, but I'm on getting it fixed if possible, so that's nice; a physical malady that can potentially go away, wouldn't that be something? Also this winter has got me down a bit as well. I don't think I've seen the sun for well over two weeks and it's been cold as shit. I stiffen up in the cold and don't want to do anything. That's not an option however, as I atrophy when I sit around too much. So yes, I'm bitching like crazy in this post, but just because I'm still damaged from 8 years of MS and I'm tired. It's every minute of every day. And it's my job to figure out how to stay positive so I can keep it up for another year and keep a smile on my face. That is the goal. Just like it was before MS. Constantly searching for peace of mind. It's just harder now, but I suppose it can be done. It just REALLY sucks sometimes when you want to do what you can't, like go up the stairs on a run, or skip, or get down on the floor and not need 5 minutes to get off of it. But those are things I know are potentially gone. So why is it so hard to accept that this is just how it is? I suppose it's because we watch everyone else just do those things without thinking of them.

So while I'm lamenting the past this morning, I also know that it needs to be over after I hit "publish" since reality is, after all, reality. So I am doing better than I was. I'll say it again: "at no time during the course of this disease could I say that the last six months were better than the previous six, I can say that right now". I'm glad as hell that I had this done. Has it been without issue and did it meet my expectations? Hell no. But all I do know is that I'm glad I pulled the trigger when I did because allot of the doors I went through are shut right now. Are they going to perfect this and have it be way better than it was with me? Most assuredly and sometimes I wished I'd have waited due to the shoulder and neck issues I now deal with. But like I have always said, since I'm SP, whatever function I'd have lost while waiting, I might not get back so I am glad I did it. I need to be frank and earnest though (in Detroit I'm Frank and in Vegas I'm Earnest). I still have the damage that this disease has done to me and that's for sure. The only things I can factually say are this: 1) I haven't used my cane since the second procedure and that's huge 2) I haven't kept sliding downhill and that's also huge 3)I have plenty of "little things" like not being dizzy so often and not having my eyes go out so much.

So why the bitchin'? I think it's because I still have so many things that are still so affected. I don't use my cane anymore, but I'm still not able to walk very far. Maybe part of me is using the old medical mindset. I underwent a treatment. Normal 'treatments' make the ailment go away. This has not gone away; it's still there. But it has lessened in intensity and is not getting worse. So I should be fully satisfied with that right? I am to a point, but it's just human nature I think to want a medical procedure to 'fix' you. You want it to make the bad things quit happening/go away/ reverse, whatever. So yes I'm very pleased that it's done what it has. I'd do it again tomorrow. But to say I'm overjoyed that I still have to live a life of regimen to my routine, still not do many of the things that gave me such joy for so long; I just can't do it. MS sucks and maybe I cheated it a little bit. But it is an insidious disease and, even doing what I did still leaves me wanting for things to work better. I"m so close to being able to exert myself enough to sweat, but I'm just not quite there. Maybe in my mind I think 'if I could just get to that point, I'd be more satisfied', but I really don't know for sure. Maybe it would, maybe it wouldn't. I use that as a marker though because I know how much better almost everything worked when I was still MS'y but could still gut out a cardio workout. EVERYTHING worked better because of the core strength and all the movement. Maybe that's it. If I could just get back the ability to move more. Isn't that really what it's always been? It is after all considered a 'movement disorder'.

So I must admit to not loving the fact that this didn't reset me to the place where I was still dealing with MS, but I was still functioning at a pretty high level and was still capable of keeping myself pretty strong. It hasn't done that. It's taken me to a point where it's better than six months ago. That's a plus, but I must admit to really hoping that it would make it so I could live more 'spontaneous life' and do things like go to ball games and stuff like that. So I hope I don't offend anyone who is more disabled than me reading this who is like "shit, I'd take what he's talking about!". I would, and am, too. I just wish it had shaken the ground more for me to this point. I'd simply be lying if I said any different. All things are relative to your own situation. What doesn't shake the ground for me could be someone else's earthquake. That's why there's that old saying "one man's trash is another man's treasure". So since I AM still ambulatory, I wanted it to make me more so. Since I can still bathroom by myself, I wanted it to make it easier and less insistent. Since I still am not throwing up from my vertigo, I wanted it to just go away. It seems it has really quieted down my disease process and that is a home run in and of itself. Now c'mon stem cells, or something else (or even advances in this where they can 'tweek' something or do something they didn't know when they were in the first time) that will make this a grand slam.

I guess I'm just a human being and my real hope was to feel 'back to normal'. Don't know that that's even on the table really, but as long as I strive for that goal, maybe I'll always inch a little closer even though I many never achieve it; but I plan to commit 2010 to making sure I still don't leave any money on the table. I'm all in and whatever comes around, I need to stay in front of and not let pass me by. I managed to hop on this merry go round, so I need to make sure I keep my eyes open for what's next. Happy New Year to all and I wish a great CCSVI breakthrough year for all of us.

Holding pattern again

2009-12-19T10:05:00.000-08:00

Well I seem to have platued a bit in my recovery. I haven't been feeling like I've improved any over the past week or so. I don't feel worse, but had been feeling "good progression" for a few weeks there. I have noticed that I have also been feeling the winter blues somewhat. Not in my attitude, but rather in that way that all of us MS'ers know; the cold somewhat locks you up. I've been stiff as a board in the mornings and have been doing a lot of shivering. When I get cold, it's not good. I start shaking like a dog shitting a razorblade and can't stop until I get REALLY warmed up. So the winter is always hard on me as I get stiffened up.

So nothing bad to report, but nothing good either. Me and Randi (fellow stentoneer) went to get MRI-SWI's last week up in Michigan and that was cool, but we didn't get to get imaged in a 3T machine like he wanted to do since we couldn't find the exact model of stents to clear us for stronger imaging. Probably would have been safe, but didn't want to find out the hard way be heating up my stents to about 150 degrees! I have been feeling like some spasticity is creeping back into my left leg, especially around the knee and calf areas. I'm not limping like I was before all of this, but it's starting to feel tight. Now that's not a new symptom, it's not worse than it was (it's still way better than it was) so I'm not panicking or anything like that. It's just that I don't feel as rock solid as I had been. Hopefully that's one of two things; the cold, or the LDN as I've read that it can temporarily crank up spasticity and I've increased to the max. dosage of that stuff here in the last few weeks. Maybe I have to scale back to 3 mg vs. 4.5 mg. That's the way you do it, you scale up to 4.5 mg every night, and peel back to 3 mg if you are having issues.

So I'll give it another week at the 4.5 mg and if it's still there, I'll pull back to 3 mg. But if that doesn't do it, then I don't know what I'm going to do! I was getting quite used to feeling like each week was a little bit better than the previous week. I go through this every winter it seems, so I don't think I can completely discount the effect that the constant cold has on me. I absolutely hate the cold worse than the heat. I remember when I first got MS I was so heat affected that I would stand outside in the snow with a T-shirt on to cool off and get my eyesight to 'come back'. Not anymore! So I'll post again in a week or so and let you all know the rub. Even though this isn't as upbeat of a post as the last few, I can still say with out quesion that I'm firmly on the good side of my new litmus test for this procedure which is this: In the last 8 years I could never say "these last six months were better than the previous six". I can now and still would have a long way to go down to NOT be able to say that. So let's just hope my histrionic ass can get through the winter!

Another week in the books feeling pretty good

2009-12-05T07:18:00.000-08:00

I noticed it had been a week and wanted to update to let everyone following know that it's been another good week. I haven't had any massive improvements or anything, but I've just been plugging along, working out every other day on the Bowflex. It's still just to keep stretched out more than anything as my shoulder, although somewhat better, will still not take any weight until the nerve heals. It's weird to work out like that. You don't keep adding weight as you get more in shape. My shoulder will take what it can take and I can't build any strength in it until my trapezius muscle reappears. But I do it to keep my range of motion pain free.

My wife wanted me to talk about how I've been feeling in a different light. You see although I am doing better than I was, and it continues, she's like "but you still come home and bitch about how you feel, you wouldn't know that by reading your blog". She's right. But she needs to realize what I try to keep conveying. I can still get myself worked up and "MS'y". However, it's so much better and that's the baseline I compare it to; six months ago. Back then I was at a point where I was hardly capable of two trips up the stairs a day. Now I go where I want to, when I want to, and then bitch about it! But those with MS know what I'm talking about. When you get steroids for three days, you can do SSSOOOOO much more, but you still have your shit to deal with. This is like that 24/7 now and I think it's great. So she's made me realize that while objectively I am doing much better (and she could give you some personal insight into that thank you very much :-)), I still do some of what I talk about back in my "A" word post. I still bitch about ability when compared to how it was when I was normal. I just haven't figured out how to work that yet, but I will.

So I had another really good week at work where putting in 45 hours was absolutely no problem and I DIDN'T GET DIZZY. That is so freakin' huge you guys just don't even understand. It takes your life over. You don't want to go anywhere where you might fall into something, you don't want to walk anywhere where you don't have something to grab onto. Imagine being in the middle of a field and being scared to move. You just don't feel stable. And while I had some dizziness, like everyone, occasionally in my "normal" life, you can't really draw a frame of reference for years of constant dizziness. It's not something you get used to and I don't know why. You just don't adapt and settle into it. It truly is a despicable symptom. One of the evil ones if you will.

So my energy is still up and my pain is down. Most of my stuff is better as I can do almost everything 'longer' and need less recovery time. Hell, before you know it, I'll be normal! Wouldn't that be nice. But I must admit to thinking there's probably a limit to my recovery, but I'm going to keep trying no matter what. I have to keep exercising and working and living. It's awesome to even think of life in that framework. I wasn't ready to give up on life, but I was at the point where I was starting to forget what day it was because it really didn't matter. Each day was just trying to get by and get to bedtime without too much pain and discomfort. I think some of you know where I'm coming from there. You just don't care anymore because you feel like if you exert any energy at all, bad things will start happening. Well now I think about what I had to do today without dread. I have a Christmas party to go to tonight and I'm actually looking forward to it instead of thinking "man I better schedule a nap in there so I can make it", and even then hoping it would actually work; because sometimes it doesn't matter what you do, you're just going to not have enough in the tank. I get to hang out with my pretty wife and have her look at me as we socially engage and think about going home and maybe even getting frisky!

I know that's too much information and probably is even in this setting. But there are things that are huge in people's lives and that was one of mine. I think it is for all men with MS. We want to be able to go on a date, and being that we're all dogs, dates are just foreplay where you use your wallet anyway! I know that's off the cuff, but guys, really?, don't you think about it somewhat that way? Maybe I'm just a perv. but I'll tell you, when that starts getting messed with, it rocks your self esteem hard. I'm in my 40's and it's still all I think about! I love that though. I'd rather think about that than MS. But I digress. Those of you that know me well know that I can say anything at about anytime and it's also true on here. It's one of my biggies and I promised everyone I was going to talk not about the science of all this, but how it affects my life, and that's how it's been affecting it. If it takes up a big amount of my time dwelling on it, then it's worth posting how this procedure affects it.

So there! I am needing to report about an adverse event that happened during a procedure. I know all the details, but what it came down to is this. Dr. Dake is using smaller stents now because of what happened to a few of our shoulders. Well one guy had a stent that was already placed earlier in the procedure come loose. It did it when one was put below it and it migrated all the way to his heart. He's doing well now, but they did have to open him up to get it out. That really sucks, but we are, after all, learning as we go. So since I have to be talk about the good and the bad, I have to report that. Now how does that affect MY opinion of all this. One answer, it doesn't. I'd have done it anyway knowing that, but that's just me. Someone else reading this may say "whoa, I need to wait until they get this all worked out." I couldn't wait. I was looking at home modification and a power chair. So I was glad I did it not even knowing what the risks were, but I can tell you with all confidence that I'd still do it again. I told one of my friends I talk to that I don't even know where my cane is. I still haven't found the damn thing and hope I just left it somewhere if you want to know the truth.

I am going to be going up to Detroit in about a week and a half as I alluded to before. Me and the person who went immediately after me at Stanford are going to get the MRI-SWI and see how much iron deposition we are looking at. If that's the culprit, then we'll see a snapshot now, and then one in six months to see if my drinking straw like jugulars open things up enough to allow some of the iron deposition to reduce. We really don't know if that will do it or not. Will it take some sort of agent/chelation to get it out, or will it just be up there and it just is what it is now? That's what we aim to find out. So I'm fired up to be going and doing that. Now that my stenosis is fixed, I'll do anything else to help us discover what part of the puzzle this is. Is it "IT"? We don't know yet, but we won't find out if we don't keep forging ahead. At some point I also want to get the doppler put on me by someone who knows the protocol as there is still a disconnect between us and Europe in the use of that technology and it really has to do with training as we have easily as sophisticated devices in the USA as anywhere in the world. Well I'm off to watch the University of Cincinnati win the Big East title by beating up on Pittsburgh (I hope!). Wish me luck in Michigan and Merry Christmas everyone, I may not post on here again until the new year. Shit's gettin' ready to get busy!

And the hits just keep on coming

2009-11-27T04:39:00.001-08:00

I guess it's been about a week since my last post. I was scared as hell to actually post that one as you could surmise from my reluctance to do so. I'm not superstitious, but as I've said before, let's cover all the 'hexing' things be they praying or voodoo since doing this in the first place was somewhat of a leap of faith. So I've had another really, really good week. The only bad thing I had happen was that I had one day where I went to work on a day I knew would be high stress with literally an hour and a half of sleep the night before. Preceding this treatment, that would have screwed me up for days. After going to bed that night, I felt absolutely awesome the next day. Recovery time from overdoing it that fast? Not before my surgery.

Since I am now talking about things I would normally have been reluctant to talk about that have changed for the better, I want to talk about one of my two biggies. Dizziness. To a non MS'er who hasn't experienced this, it may sound pretty benign. I remember spinning in circles as a kid just to GET dizzy! And as an adult playing in my friend's annual "beer olympics" (I won't go into details) doing that chug a beer and put your forehead on a ball bat, spin around three times and then run! We actually got many laughs from that event watching people wipe out the woodpile, fall into the pool and generally look like they'd just been shot. But to be almost 24/7 dizzy for the last 3 or 4 years? The word funny isn't even on the map. I used to eat with my eyes closed because I was always just eating to not waste away as I was hardly ever hungry anytime but in the morning before things got stirred up. I still have moments where I run into the wall with one of my shoulders by turning too early (once again, fellow MS'ers know just what I'm talking about), but now I just tell the wall to piss off and move on. It used to be an instant trigger for dizziness. So for a few weeks now, I haven't been dizzy, not even really on the day I worked on an hour and a half of sleep.

I actually even uttered on the forum I frequent (ThisIsMS.com) that if this keeps up, I can almost see myself running again. I can't believe I even uttered those words. After 8 years of MS, that may just be wishful thinking because I know there's damage in me, not just inflammation since I'm progressive, but just to even mention it would decidedly not have happened before. I really don't know if this has stopped my MS or not, and won't for some time. However, I do feel it has, to this point, helped me gain back some lost function. And no it's not just the up and down of RRMS. I'm Secondary progressive. I haven't had a Remittance in symptoms for a loooonnng time.

Another really nice thing is that I don't feel so fragile anymore. I used to feel like I was made of glass. Like to hop down a couple of steps would have just made my knees shatter into a million pieces. I'm feeling more solid, and consequently feel much more stable and balanced and able to stand on both feet with my weight distributed evenly between the two. That feels really "good and strong".

So my next stop is to go to Michigan and get my head examined using MRI-SWI that shows iron build up/deposition. They are doing a study up there (but not taking anyone else at the moment) and I called and offered my head up for exam as someone who has had the procedure done. They wanted to see this as they are just taking "before" pictures right now, and this is a chance to see me freshly after the procedure, and then look at me six months from now to see if the new, good drainage will actually decrease the iron deposition. I sure hope it does as you can't necessarily chelate iron out of your body as it's in every one of your red blood cells. I don't know what the outcome of that may be, but at least we would know if it's getting better or worse over time in terms of excess iron in the brain. It will just provide another piece of, hopefully, valuable data. I decided a while ago that I am a lab rat for sure since I already have been a teaching moment in terms of what can potentially go wrong when you ding the spinal accessory nerve and also what to do if you have what appears to be two jugulars instead of "spider line collateral" veins.

So Happy Thanksgiving everyone. I know what I'm thankful for this year. Being able to engage with my family and friends somewhat boisterously and not worry about getting dizzy for one thing. I mean even laughing and 'getting loud' was all it took to get me dizzy before. But having maybe stopped my progression is another thing to be awesomely thankful for.

All about positive changes....because there aren't any negative ones

2009-11-16T16:32:00.000-08:00

OK. So reluctanct to talk about anything positive Lew will finally talk about (dare I do it?) some positive changes that I simply can't ignore. It's that whole "Awakenings" and "Flowers for Algernon" thing and also because I had such a major letdown with the Tovaxin vaccine. That was my fault, but it still sucked. Well as you guys know I can be windier than a bag of assholes, so I am just going to briefly describe some of the things that are going good.

Even though my shoulder is all screwed up AND I'm out of shape because I haven't lifted in a loooong time, I'm able to bench more, curl more and tricep curl more. I'm sure it would be there in military press and pull downs also, but my shoulder is still impeding that. But the most awesome part is in the area of coordination (we're still on the Bowflex here!). I have the leg extension attachment. The leg extensions don't require much coordination. You just sit down and put your legs behind the bar and straighten them out. It's the hamstring curls. Before the surgery I was not even doing that one because of the dexterity involved in laying flat on a slim surface, putting my legs straight out behind me, and getting all situated. I simply could not do it. I have been doing it for about a month now, and I haven't even had to lift my left leg up with my hand! That is major. I could barely lift my left leg with my own muscles past where it needed to be to go up stairs (which have also gotten easier)

Big deal #2. The airports. On my way out to my first procedure I had my Mom and she pushed me everywhere. I could still walk short distances, but no way could I even make it to the gate area of the tiny Dayton airport by myself. I probably could have if I sat and rested halfway. The second time, I absolutely needed my cane and had a pronounced limp. There were times I didn't use it, but on the longer jaunts I did, and I was always limping. The third time I didn't even take my cane. What can I say about that? I mean I didn't limp or anything. I was completely tuckered out after going to my gate in the Houston airport, but I never limped.

Big deal #3. I'm not limping at all anymore. My knee has quit screaming at me, which means my spasticity is going down. This is huge. Now I still can't run a marathon (Ha!), but on my walk Saturday I "jogged" very slowly for about the last 100 yards (It was in my boots to; which I'm sure looked VERY cool). I just can't deny that things are changing. I've never, ever been superstitious, but I don't want to jinx myself! Not with this. No chances, but it's been a while now that these things have been happening. I'm sure my host in California, Kelly, can attest to the difference in me from the first to the last trip. Man my buddy Doug married a cool chick. I love you Kelly!

I still definitely have MS symptoms. Heat still affects me adversely. I still get dizzy and my vision still gets foggy, but I recover so much faster it's not even funny. I don't know if this is the answer or not; especially since I've been progressive for a while and there is pre-existing damage. But it's a large part of it. Of that I have no doubt now. When I'm at rest, and don't have to pee :-), I almost feel normal. This is all so cool I don't even know where to begin. I've had this shit so long now that I don't even dream that I'm healthy anymore. This is going to be a short update with hopefully many more to come. I'm hitting the PT as hard as my shoulder will let me, and we just joined a gym so I could try out all the different equipment before I choose a piece to buy for the home. I was dead set on an elliptical, but thought I'd better give it a shot to see if I could handle it. We're going tomorrow and instead of being intimidated, I'm elated! I haven't felt this good in a while. I worked out tonight after a full day of work. Looking back just a few short months, that would have never happened; it was only on the weekends, and even then I absolutely dreaded it.

Until next time with hopefully more to tell, but I've been working on the "A" word, so even if I'm stuck right here I'll be ok. But somehow I think better things are to come. That, in and of itself, is a huge step for me. To look to the future, just that, to think to the future.

The "A" word

2009-11-07T08:46:00.000-08:00

I've come to a profound conclusion in the last few days. Even though I feel like I deal with this pretty well most of the time, and always outwardly so, I have done an awful job of acceptance. This is a tough one. Sure I know I need to 'accept' I have MS. I thought I already had. But it was something different I now believe. I think all I've done is gone through the process of acknowledgement. Just enough to keep me out of destructive denial. I think denial can be constructive and destructive, and acknowledging it keeps me out of destructive denial. So what does acceptance really mean to someone whose life has been so drastically altered? I suppose there is a slight bit of 'giving in' that needs to be done, and that's not something I've ever been prepared to do. I've never given an inch to this disease, and therein lies the problem. Allow me to explain. Paragraph break coming Jamie (Ha! you know I love you brother!)

With every techique, every pill, every coping mechanism comes a big price with MS. When someone healthy gets sick, it's not even a question of taking your pills, or staying away from your ciggies, or something like that. And it's because it will pass. So the dynamic I've created has always left me very resistant to do anything since with MS it could very well mean it's for the rest of your life. Whatever you have to do to shit properly, you have to do for the rest of your life. Whatever you have to do to sleep properly, you have to do for the rest of your life, and so on and so on.... So I've taken the high road and barely take anything to cope with my symptoms for that very reason; because it will be forever. We all know that 99% of drugs work in the short term until you get used to them. Sometimes you build up a tolerance, and sometimes they simply cease working. So I've chosen to do nothing. I mean if I took a laxative every day, it wouldn't be long before they wouldn't work that one time when I REALLY needed one to work. If I start taking Ambien to sleep, eventually I'll build up a tolerance and it won't work anymore. So I've always taken the natural route which has taken me so far. Hey, there really are messed up things in my body and they really don't work properly and all the natural stuff in the world isn't going to make it work properly. And then it spills over into the rest of my symptoms like walking and peeing and things like that. Well I've always been able to just gut it out. If I have to walk a 1/4 mile, I know I'll be absolutely trashed by the end of it. But then do you know what I do? I get all bummed about it and dissappointed and all the other things that happen when you realize you can't do what you set out to do. And since I've never accepted things, it's always like it's the first time I couldn't do it and the dissappointment is also like the first time. So I'm coming from a place where I still percieve myself as being able to do anything, and then when it's painfully clear that I can't, I feel like I did the first time I couldn't walk somewhere, and this happens daily. Eventually I'm going to drive myself nuts.

So I need to go into things from the perspective that I have these limits. Even if we have stopped the onslaught of progression, I'm still pretty severely hampered by the damage that's already there. Why do I want to set myself up for a fall on a daily basis? Just stubborn I guess. I mean to go through the same level of disappointment every day is starting to wear on me. It's like Groundhog day and I need to finally realize what actually IS happening to me and live within my limits. So coming from a healthy perspective, I'm going to get trashed by the way it turns out every day. But if I accept the fact that I do have limits and DO ALL I CAN WITHIN THAT FRAMEWORK then maybe I can get on with the business of being happy with my life again. I need that, it's just the way I'm put together. I know now that I will never find it just hoping that today will be different from yesterday. I mean, christ, this has been going on for a while, yet I still feel the same way every time I can't walk 2 miles. For God's sake I haven't been able to do that for over 2 years! So accept it already. Did the CCSVI procedure 'get it'? I don't know, but I think it's a huge part of the puzzle that is MS. Maybe there's more, and maybe I will just need to wait longer to start feeling like I don't have limits. BUT I need to accept the fact that there may always be limits, even if the procedure did quit the advancement. Like when you get injured. I think that's maybe part of it too. I mean it hasn't taken away my entire ability to walk. So I go as far as I can, and usually a little farther. It's just that when the pain, weakness and unsteadiness happen, my brain needs to quit acting like it's a surprise; it decidedly is not.

So the other day I'm at a huge factory in Dayton. The walk from the handicap spot to where I need to go is literally about 1/4 mile away just to get in the door. And then after I get to it, we are talking a 2.5 million square foot plant. I will need to probably walk another 1/4 mile to see what I have to see, and then of course retrace it all to get back. Why this sucks is the whole time all I'm thinking of is "lord I hope I don't have to pee" because #1 I'd never make it and #2 the BR is probably way off the beaten path anyway in the factory and that's MORE walking. So how does acceptance play into this? Well if I accepted my limitations I'd use the devices and pills that make that type of thing easier. I mean if I had used a texas cath (external) I wouldn't have to worry about that aspect and I could have stayed more engaged in what I was there for. So instead of trusting luck and taking a chance, which leads to much more stress (not to mention me having to pee on a tree on the way out), why don't I just accept where I'm at and prepare accordingly? I mean dehydrating yourself is for sure not the answer, but that's how I've been doing it. But if I use the external cath. then that means I'm giving in. Well maybe to a point, but I need to start setting myself up for success, not possible failure, which is what I've been doing.

This is going to be hard. I mean I guess I always thought once I give in, my 'life' as I know it is over. I won't be able to stay socially engaged and all kinds of stuff. Well that would be true if I never take advantage of an "aid" (be it drug or device). But if I use these tools, then I believe it's going to surprise me. I mean they are there for a reason, right? So that's going to have to be the mindset I have to create. I have to go in knowing that "this is what I can do, if there's more, I need to prepare". That will be more work, but proper pre planning in everything in life always results in a better outcome. And I don't know if can keep living with the constant dissapointment that, in my mind anyway, I should have gotten used to by now. I mean don't we all have to adapt to what hand we're dealt? I haven't been and have still been coming from the place that I am really capable of more than I am. Will this lead to a lower self image? I don't know, but I already do know what NOT accepting it does.

So now I know why I've never been creative. Well partly. I've led a pretty easy life. Things always went my way in the end and things have always been easier for me than most. So even though I wanted to be a blues guitarist (lol), I never had enough blues. Even though I wanted to be a writer, my soul is just not that tortured. So now it is and lo and behold I have cathartic moments almost non stop. So that's why I write this damn blog. I almost feel like I'd explode if I didn't. Maybe that's how Stevie Ray Vaughn felt before he played like he was channeling the Gods. Maybe that's why everyone creative seems to have some 'dark place' that they come from. Then again, maybe I'm all wet and those people are/were just creative! Hell I don't know. All I know is that it's not OK with me to feel like I'm getting blue. I have to stave it off at the pass at every turn. Like I said, it's just how I'm put together. But realizing that I need to accept rather than just acknowledge the fact that I have MS is something I need to go about the business of doing post haste. I have literally been setting myself up for disappointment. No one to blame but me. I mean I've already spoken of how I'm starting to get used to the state I'm in and how that's a good thing as it's not a constant downhill slide. Now I need to go about the business of realizing that maybe my miracle is just making it stop and if I get better, well that would be something.

Holding pattern and going back to Cali. part tres

2009-11-04T16:02:00.000-08:00

Here we are at basically 4 months since this odyssey all started. Boy does it seem like longer. That is a very good thing as when you are in the throes of progression, time just melts away and you end up looking back and saying "wha' happened?". So I'm still pretty much in a holding pattern as far as my own perception goes. I had some transient leg weakness in the last couple of weeks, but that has abated. I have started exercising and going to physical therapy, so it could be that as much as anything. But I ain't gettin' worse! As I've said many, many times, that's huge, ginormous, stupendous and every other positive adjective you want to throw at it. I'm starting to get used to where I'm at and it's a very, very good feeling to have limits that aren't always in major flux. I know what is going to make me hurt and then the decision about whether to do it is a much more personal choice. When you don't know where you're at, you just are always doing too much, getting too exhausted, pissing your pants, all kinds of shite. It's so nice to have an expected outcome to what you choose to do. It's not only disconcerting when it's the other way, but it's also very deflating to your ego. It's hard to explain, but all you MS'ers out there reading this know exactly what I'm talking about. I never thought in a million years that at the age of 43 I would have to be 'rationing' my effort. But now I can pretty much get done what I want to within reason since I can just spread it out and pace myself. When you don't know where your limits are, you are constantly not getting anything near the amount of stuff you want to get done as you go to exhaustion all the time and have to keep putting things out. Now I'm not talking about raking my entire yards' worth of leaves or things like that. But rather doing things at work, doing housework, that kind of stuff. It's so nice to know what to expect. You know it's about the time where you're going to trip your trigger. You just stop for a bit, have a cold drink and a break, and start again. When you go too far, many times you won't get the opportunity until the next day.

So I'm going back to California for the third time. Check up on round 2 of the procedure. Here's where it gets good. If something has to be done again, I can do it just up I-75! Only four short hours away from here by car is where one of the docs who is getting into this is doing his thing. You can check out the info. at http://ms-mri.com/. There is a doctor up there who is doing a type of MRI that I may have alluded to before called SWI or susceptibility weighted imaging. Don't know what the hell that mouthful means, but he can actually see the areas where there is increased iron deposition from years of reflux of de-oxygenated blood. On a whim I decided to shoot them an email off the generic email on their site to see if they could do my check ups. Well they called me the same day and I'm going to go up there when I get back and they are going to do the MRI with SWI. That's very intriguing to me as I think this doctor (Dr. Haacke) may be really on to something with the whole iron thing. Now the next question is can we do anything about the damage? Either the already inflicted damage done, or the flip side of if we remove it will things heal? Those are burning questions for me. As I've stated before, being secondary progressive means my disease is no longer an inflammatory process, but rather a degenerative one. So at the age of 43 (your nervous system really slows it's ability to heal after about 30-35 I hear) I'd like to get anything that could potentially damage my brain further the hell out of there. Also I'd like to give it a chance to heal to the best of it's ability, and I don't know if that's possible with all those macrophages in there. I probably got that term wrong, but there are things that do damage and things that clean up the mess, and they are not in there at the same time. I think the bad guys are the macrophages, so here we are.

So going forward, a drive to Michigan for the day is a hell of a lot less daunting than flying to California from Ohio. Plus it potentially opens up the door for people on this side of the Mississippi since Dr. Haacke is teaming up with an interventional radiologist at Wayne State U. I don't know when or if they will be doing the interventions like they are at Stanford, but I do know that they want to get a look at my noggin since I've actually had the procedure done. I'm pretty jazzed about the prospect of furthering Dr. Haacke's understanding of what he's looking at, as well as being able to get a picture now to compare to a picture later and see if things are headed in the right direction. Right now they're only doing the imaging to back up the theory of "everyone with MS has this" I believe and it will maybe get them funding to proceed with a trial and get published results. Well as you guys know, my shoulder took a big hit and I spent literally all day doing computer stuff at work and right now it is just jonesing from typing all day so this will be a short post. I leave on Tuesday of next week and I'm sure I'll update from out there like I usually do. So everyone send good juju that my last round took really well like the first one did and all I go out there for is to get in the tube and talk to the doctor. That would be very cool as I'm going by myself this time. Now that is a big change from 4 months ago when I had to have my mom push me in a chair and use my cane when I had to walk. That's a big change. Like I've always said, it's like kids and growing I think. Others notice more of a difference in me than I do in myself and it's all good. That doesn't suck.

Waxing Philosophical

2009-10-17T07:23:00.000-07:00

Here we are and I haven't updated this thing in a couple of weeks. I'd hoped to be able to write of just constant improvement every week, but alas it seems that my expectations were a little lofty due to the progressive nature of my MS. What it comes down to is that I'm in kind of a holding pattern. I don't feel a lot better or a lot worse; which as I've stated before is a very, very positive thing since I feel if I wouldn't have done this I'd be writing a blog of unabated negative progression and how everything keeps getting worse. That's what you're up against here. You think to yourself "I'll do THIS if it starts up". But then you realize once you're progressive (and really to me during the whole course since it still plods forward despite the drugs) that there are some things you can do with diet and exercise; if you're able to exercise strenuously enough to make a difference. And that's your conundrum. You know what will help, but you aren't physically able to do it. So being in a holding pattern is A-Ok with me right now. There have been some improvements in energy level and things of that nature, but I'm used to them now and that initial improvement "jolt" was noticeable and my hope is that it's just so slow that it's hard to notice right now.

So that brings me to what I thought I'd write about this morning. What this does and how I've dealt with it. Even when you're disease if relapsing and remitting (RR), you still are progressing. In my case it really wasn't noticeable for about 4 or 5 years, but I obviously progressed during that time as my abilities started to go. But there is still a lot you can do, but what you CHOOSE to do becomes the mind fuck. You see there comes a time when you start to have to make decisions about how you are going to use your energy. Before all of this I would go to work, come home and work out and still do whatever the hell I wanted after dinner. And no saying "but you're in your 40's now, that was going to slow down anyway". That is true, but I was one of those guys in their 40's who had literally never been out of fantastic shape since high school. I would still be living like that for quite a while I know for sure. Work on the house, work in the yard, fix something, read, whatever. It was my choice and there were no doors closed; whichever one I chose I just walked through and did. Where I'm at now really is a weird spot. Let's take today for instance. A dear friend of ours daughter is getting married. That's a big event for someone with weak legs, a weak bladder and bad balance. So I need my energy to do that. But I also have to try and take care of myself. Which means taking a walk or doing some other type of exercise that I'm able to do. Well the thing is, I don't have enough in the tank to do both. So a decision has to be made. Take care of yourself, or meet your 'obligations'. In a vacuum, the choice is easy, you must take care of yourself as the #1 priority. But life is not lived in a vacuum. Life is about relationships, and if you don't engage in those relationships, they wither. Not that people just will turn their backs, but rather that your name just starts to not come up due to how many times you've made the choice to use your energy solely to take care of your issues. And why are you taking care of your issues? So that you can live your life! There's the rub; which do you do? It's definitely a balancing act for sure, it's just the state of my life and I'm doing it the best I can. But there's just plenty that I'd choose to do that I'm unable to do because of this. And people understand, but not really because I don't appear outwardly disabled until I get tired and the pain ratchets up. I don't suffer from fatigue, so it's really not just straight up energy, but it's that my legs will just get so wobbly they won't work anymore and I get dysfunctional dizzy. Then I can't make it to the bathroom and that's what I mean about my energy. It's more effort level that can't be achieved.

It's like the tipping point has been reached where taking care of all my bullshit has gone over into the 51% of my waking life arena and taking care of myself takes so much effort that I don't have the effort to give to "live life". That's when it sucks. I can take a lot. A whole lot. It's not like this happened overnight so it definitely doesn't feel like someone who had a major nervous system injury where their ability is gone in an instant. My heart goes out to anyone who deals with that with grace. Those people are who we should all idolize. That shit is hard. But I still can walk, just not very far, I can still hold my water, just not very long, and I can still stay upright with balance, but not after much effort. So it comes down to life has gotten to the point where I can do a little, but my family is still doing a lot. When I try and keep up is when it's just very difficult. I'm to the point now where I really can't. That's why I have flown across the country twice (still have a trip in November) and have three pieces of Nickel in my veins. I just hope this works.

Some of you are probably thinking "well it doesn't sound like it's worked". That's misleading and I've come to understand it better and that understanding has come from my shoulder and what's going on with it. I'm rehabbing that dude and it's not going bad, but all I'm doing right now is keeping it from atrophying; trying to keep the range of motion so when the nerve heals I can get busy strengthening it back up. Here's my take on why this works so well on people who are RR and why it's a long time coming for us progressive folks. When you're RR, it's all inflammatory. So the surgery takes the deoxyginated, iron filled, refluxed blood and takes aways the source of the inflammation. Well since the nerves aren't functioning correctly due to the inflammation, you take the inflammation away and whatever the nerve controlled starts functioning again. Like anything you'd take an anti-inflammatory for, take it away, pain is gone. Same concept here, take it away and it works again. Well for someone who is progressive, the disease isn't inflammatory anymore. That's probably why steroids (massive anti inflammatories) work so well for RR attacks and not so much for progression once you're not RR anymore. So now we've theoretically removed the source of the damage. Only in this case, there's no anti-inflammatory response. And here's what I learned about my shoulder; nerves take about 1" per month to heal. So my shoulder could stay screwed up for about 13 months since that's the measured distance from where my nerve got banged to where the dysfunction is. In my mind anyway, the same thing holds true here. If we indeed turned of the damage, now it's going to take a long time to heal. Think about the distance from a lesion in your brain to whatever is affected. So that is why, for me and all the other progressive patients who've had this done, it's going to take some serious time. So we have to keep moving as much as we can to stave of atrophy and wasting. I'm already down to 155 pounds from a normal of around 170. And my waist is 2 inches bigger! It's like rapidly accelerated aging.

So while this is where all this progression is taking you from healthy to where you're at, you stay busy, you try to keep working and living and doing everything you ever did. For a while you succeed. In my case for a good long while (well 4-5 years anyway) and then when the stay distracted/denial thing just doesn't work because you just can't 'push through it' anymore, it comes down on you like a ton of bricks. That's when you go "Oh shit" and finally realize that the life you'd thought you'd set yourself up for is out of your reach. Maybe the home you live in is not liveable for you anymore, all kinds of things happen all at once. That's the stage I had gotten to when I decided to do this.

So this make seem a little like a negative "I don't think it's working" post. But it's not. I'm just starting to let down some of the walls I've erected to stay sane through all of this. Trying to get to a place of calm acceptance because I believe it's painfully clear I am decidedly not going to go "back to normal" if this truly does turn off the damage. And one of the ways to do that for me is to understand what's going on so I can have a clearer understanding of what to expect so as not to get too let down. There is just some stuff where the nerves are probably dead, or close to it, and may never get back to their full potential. When you pass the age of 35 or so, your brain and nervous system lose alot of what's called plasticity, or ability to heal.

So hear I sit, writing this post instead of going to try to workout and take a walk because I'm going to the wedding tonight. I've made the decision that's what I'm going to use this 24 hours worth of effort for. Mon. - Fri. it's work. That decision is easy. It's the weekends that are hard because that's when you DO WHAT YOU WANT TO DO (read: live life), or try anyway. Sheesh, I've had 3 wedding in the last 4 weekends. It's like when we were about 25 and we were all getting married. Now it's our damn kids! Speaking of kids, I want to talk about the dynamic going on with mine. When I was healthy, I was a pretty aggressive life liver. And I wanted my daughter to "do it right", which meant to me that she was supposed to be like me. So I tried to make sure she was as competitive as I was, as socially engaged as I was, all of it. That was SORT of working. Well now I've just had to loosen my grip. I physically don't have the effort to live her life and mine. So I let go; a lot. And lo and behold, she is absolutely blossoming. She is becoming who SHE is going to be. Not who I want her to be. And it's beautiful. She is so fucking beautiful and talented it's not even funny. Everything I was trying to MAKE her do well she is doing so much better now that it's her that's providing the motivation. Sports, social life, everything. So my advice to everyone who wants a pleasant teenager is this: do everything you can to control everything, and then let go at about the age of 9!! That's obviously off the cuff, but it's worked for us. She is exceeding everything I ever thought she was about and it's because I'm letting her learn her own lessons. We parents of this generation are often times like snow plows for our kids. Our kids need to plow their own snow. I could go off on this for about 10,000 more words, but I won't. It really sunk home that I was doing the right thing when I was with my host family at Stanford. They seem to have gotten that memo out of the gate, and it's an absolute joy to be around their family. They have four kids under the age of 8 and they are all just so unique and you can just tell that THEIR personality is developing on it's own. No parent clones in that family. Just kids becoming who they're going to become and who will more than likely live up to their potential. Isn't that what our job is anyway? Not to knock down all the hurdles they have to cross, but rather to support them if they need help getting over it in their own way?

So I'm done waxing. I'm feeling strangely serene here lately because I think I've accepted the fact that just because I had this procedure doesn't mean I'm going to wake up tomorrow without MS. However, I do think this is the biggest part of the puzzle to MS. It might not be all of it, but I suppose it might. Since I'm 'dialed in' to what's going on with this CCSVI model, I can tell you that it is getting some serious traction. I'm going to put two links of news stories that have come out of SUNY (State University of New York) just in the last week. I think that it's, at least in the world of MS, going to shake the ground.

Until next time

http://www.wivb.com/dpp/news/health/UB_leads_way_in_battle_against_MS_20091014

That's the local news story link. There's a press release somewhere of just text, but I can't find it! It comes off sounding much more "professorial", but since I can't find it just trust me that this is getting a foothold, i.e., can't be ignored by the MS community (who is very heavily funded by the drug makers).

This week's update

2009-10-03T08:13:00.000-07:00

So I finally got to the physatrist concerning my shoulder. No surprise that the spinal acc. nerve is pretty badly damaged. Now I know exactly what it is and will just have to wait until my next appointment to see whether or not it's healing. It takes a good while for nerves to heal, they told me 1 inch per month and I'm damaged over about 13 inches of nerve, so this could be a long process. Knowing that, I will now stop talking about it except to update in a few months when they tell me it's healing or it's not. I have a good suspicion it is probably the former because the pain I've felt I believe I've brought on from over use. So we wait now. On to the better part of the update.

These updates have become a bit anti climactic since everything is changing at a snail's pace. You all know my expectations (where they came from I don't know since I know my MS is progressive and everyone who has immediate benefits is relapsing) were very wishful thinking for something quick. Well I think some things are changing for the better. The routine based things are the ones I am telling the most difference in. Walking from my office to the assembly department at work for instance. Or how I do at one of Sarah's soccer games. Those things that I do religiously and kind of 'mark' in my head how I've been doing. One thing MS has really put a crimp in for me is the fact that I am a stander. Before all of this I would even watch TV standing up a good deal of the time. I'd put my beverage on the mantle and stand there and watch TV so I could go do something during breaks. I would also always stand at my daughter's games. I haven't been able to for about two years. Well this morning I stood for both halves. I did sit during the ten minute halftime. But not only did I do it, I did it with very little pain, and no tingling. That was very good and it was also a bit of a surprise. I wanted to stand for a little bit until my legs really started tingling; my signal to sit down. It never started. AND this was the field where the bathroom is probably 3 soccer fields away. I made the trip twice with no limp. I was so taken aback. I mean you just sit there (stand there today!) and wait. You wait for your legs to start up their mess, you wait for your eyes to go foggy, you wait for dizziness and you wait for the spaciness and brain fog. It just hasn't been coming unless I really over do it.

And the walks up to the assembly dept. There have been times where I got all the way back to my office and realized I forgot a piece of data and had to go back up there. There have been times when that has almost brought me to tears of frustration. I mean after all I'm only talking about a little walking. It has gotten way better in terms of how often I can do it during the day and how it doesn't make me so screwed up with all the other stuff. The only thing that I really can't tell any significant improvement in is my bladder. It is still the same as it has always been through this. My balance is still pretty off too, but I think that's coming around. I really want some relief in my bladder, but if my legs keep getting better, the bladder isn't so life altering as I can make so many more trips with out making myself just have to stop. So all in all it's been a great week. I'm just talking MS here since my shoulder now goes into the category of injury. I really don't think I've had a headache. Man that's nice. This second round of surgery, I believe, has really opened things up (literally). I just seem to be on much more solid ground. All you MS'ers understand that innately. Being able to stand with a balanced posture, chest out and also GOOD posture, is very cool. It raises my self image alot; makes you feel like you're not so sick if you will. All of this stuff is really good news. Now with MS also comes the up and down nature of the whole thing. You feel good for a bit, then you go back. After years of that it just beats you down on all fronts. My great hope is that now I don't yo-yo like that and can start to feel like I know who I am physically and can stop dwelling on all the shite that is always negative.

So all in all I'm happy about all of it this week. I hope next week I can raise the bar a little higher. I'm supposed to get my physical therapy regimen next week and I am of the opinion that it's time to see if I can get into a little bit of shape. If I can, then I'll really be feeling good and knowing that this surgery is for real. Man, I can hardly let myself go there.

I really hope this keeps up. As it is with MS, you have to treat all your upticks as temporary. Hopefully I won't anymore, but that's a big hope.

My stupid shoulder

2009-09-25T17:01:00.000-07:00

Well I wish someone was here to take a pic. of my shoulder. You've all heard me bitchin' about it and it's not getting any better. My friend Marie has it figured out as she has the same thing. She was patient #2 and is an RN and good researcher, and she figured out that it's a pinched spinal accessory nerve. Her, I and another patient all have had this so it seems like it's a potential complication that wasn't accounted for (if it even could be since it's endovascular) so I told Dr. Dake about it so that he's on the 'lookout' for it, but as I said, I don't know that he can do anything about it. The hole in the skull that the carotid, the jugular and that nerve go through does not have a lot of clearance and that's probably where it's pinched. The sheath that they're in is also tight and that could be it as well, but I think that would have abated right now and it being pinched against bone seems more plausible to me anyway. I hope I haven't bored you all with those specifics before. That's one thing about these postings; it's almost impossible to remember everything you've already written about, and my memory sucks so please bear with me. So it's been a week and I really not only feel obligated to post on progress, but I also don't want it to get away from me. The good thing about that is I didn't even realize that it had been a week. The reason that's good is that I've been busy at work, and the time slipping away as it pertains to something with MS is a good thing as it indicates I may be through over obsessing about it so much. Going into these uncharted waters really creates a dynamic where you are constantly thinking about what's going on with your health. When you're not doing well, that happens also as every head movement, every leg movement and even every eye movement are all a constant reminder that you are not doing well. Hey, I'm doing this so that I can go for days with out thinking about this. So it's off to get an EMG from someone called a physiatrist. I'll tell you though, I wish it was tomorrow. I was just going along my merry way when suddenly it clicked that Marie was trying to tell me that this was a big deal as serious nerve damage could occur if it's not getting oxygen. Well it finally sunk in and I hope I haven't waited too long. But it's pissing me off as the rest of me doesn't feel too damn bad, and that's good and I want to enjoy it!

I'm also trying a different oral drug that there is a ton of testimonial evidence on called Low Dose Naltrexone. It's a very low dose version of Naltrexone; a drug that is/was used for opiate addiction! I know that it releases endorphins and my brain simply needs all the help in the world to try and heal. Now I really don't know if endorphin release promotes that, so if you do, don't tell me! There really are some great stories of success using simply that drug. It's apparently very benign and has minimal side fx. When you start you can apparently not only dream really vividly, but also have some disturbed sleep, but the protocol calls for easing into it to help with that and is then dosed based on your weight. Regular Naltrexone for it's original intent was 50mg/dose. This starts at 1.5 then to 3 then to 4.5 and that's the dose you go up or down from based on how you're sleeping. I've also recently learned from the woman at http://ldners.org that you can take it during the day now; it used to be thought you had to do it at bedtime but that has apparently changed. That webiste has a wealth of information on it, is easy to follow and all the links work, which is nice. SammyJo did a great job with the site. The probable reason for no trials (there may be one going on now, I don't remember) is that it's cheap because it's been on the market for so long. So there's no incentive to fund a trial. Sucks, but that's the way it works. So that should be here in a few days and I'll let you all know how that goes.

My golf tournament/fundraiser is coming up next weekend. I hope it dries out, it has rained non stop all week long and is supposed to go right up until Sunday. That's going to be quite the gesture. It's going to be like a chick flick in there if they make me speak; there'll be dudes crying and stuff. I used to speak in front of lots of people all the time for work. It's totally different now as it's such a totally different deal when you can't see. Don't know why or what that is, but I don't speak in front of people like I used to. I'm sure it's also got something to do with searching for the words and not just ripping it off like I used to. I will have to say something, but I am such a chick now. I'll come in during then end of something like "Terms of Endearment" and start tearing up not having watched a minute of it. Oh well, I just blame it on the MS... Well my shoulder is starting to yell, so I need to stop typing. Till next week...

Quickie update after a couple of days

2009-09-18T20:06:00.000-07:00

Well my feet have come back down to earth because I do have a surgery related headache, BUT it's not even bad enough to take anything but a couple of Advil. To quote Bill and Ted "Strange things are afoot at the Circle K!". There's something going on and I'm going to walk the airports going home. That will be flippin' ginormous. I'm still pretty damn giddy about the way I'm feeling. Yes I still feel like I have MS. But do I feel better than in the last few years? Hell yes. I can say it now. Something is very different. I almost let myself fantasize about what I'd do if I got my health back, but had to stop short. Quite the coping mechanism I've developed to not get too let down. The 'balanced' vision, the conversations I'm having without looking for words, it's unbelievable. Conversations used to wear me out in a large way. I love conversing with people and when my host family was doing the dishes tonight they were jamming to some funk. I actually got up for a moment and did the neck bob. I couldn't even move my neck last time, and my mom can attest to how bad the trip home was. Just a quick update because it hasn't gone away. I hope it never does.

Where to start?!?

2009-09-17T12:32:00.000-07:00

Well I'll probably start by cutting and pasting what I updated on the forum where I found out about all of this; so much easier than typing it all again and I will say much of the same stuff, just in a way that people who are hanging on every word of CCSVI 'stuff' will relate to. To say the last few days went well would be an understatement, and just in time really (not for the disease course, just my sanity). The last time I went out, my mother had to wheel me around to every appointment save the MRI because that building was butted right up to the parking garage. This time? Na baby na. No wheelchair...not even post op. I was even telling my stepdad that I couldn't believe I didn't need it pre surgery, but that he'd definitely have to wheel me out. Once again, soles on the ground! That was a most excellent surprise. Being able to walk it all pre op was a pretty big deal since I could not before the first go around. So if you go back a few posts, you will see that we did not (we, like me and the Dr. collaborated on it) do anything to my left side since there was such an anamoly of a valve and everything in the collateral vein where you usually see many spider collaterals trying to make up the flow. So that was all really good, but if you go back a ways on here you will see that the surgery itself knocked my johnson in the soil (ok,it's the internet, it knocked my dick in the dirt!). This time it did not. He placed a stent (smaller diameter than before) right in the middle of the valve and the flow started up. But since it was lower in the neck, there is WAY less discomfort. While he was opening up the balloon to see what the flow would do it hurt like hell, but that has been the worst of my discomfort; right there on the table. I feel like I won't have to be off work next week and that's a reassuring feeling since I work in the hoppin' area of the economy that is the automotive sector.

So read the following through the eyes of someone who is very enthusiastic about the results of the actual physical procedure. I still won't know for some time the long term effects this will have on my MS. All we are hearing is that people with the progressive forms of the disease are taking longer to heal; sometimes very much longer. So I think my pre-surgery walking was a definite sign that the first round definitely did something. I say that because a rosy outlook would never have propelled me as far as I walked by a very, very long shot. There have been more times than I can count that I had the best attitude in the world, but the legs just simply wouldn't physically propel me another step. I never got to that point. So my hope is that I was already healing somewhat and now will continue and heal even more now that both sides are opened up. I did almost forget one thing. My 8 week old stents look EXACTLY like what the Dr. wanted to see. On the MRV, they looked like McDonald's straws they were so round. So temper your reading of my cut and paste of my forum post understanding that I'm on cloud 9 right now since I won't be dealing with Hell week like I did last time. Here's what I had to say to our gang of MS'ers:

This post might be longer than my first post op round as I am almost pain free! I don't even know where to start since everything was almost 180 degrees from my first round. I didn't even do ANY pain meds last night. I had taken .5mg dilodid (I know I spelled that wrong) at about 6:00pm and that was it. One perc. this morning at 4:00am and it's about 11 right now and I haven't even wanted one. For one thing, the stent is much lower, and as we know smaller. There's a small signature of pain that feels like I have a really swollen gland (you know the ones your mom felt to see if you were sick). Sitting at the 'puter is no problem at all.

Dr. Dake came in this morning and I was already dressed from the waist down, shoes and all, with my gown hanging from my IV pump since all the lines had to go through the arms! He was just 'wow do you look alert'. I also feel that way, this quick, amazing. I'm already finding my words quicker, I'm just blown away. I walked 3 laps around the area I was in not 2 hours after the procedure (this time I was where Randi was; along the entrance to the hospital) and stopped in and saw Tracy (Questor). He looked like I did 8 weeks ago post op, but he was very upbeat, but I could tell he was really hurting so I didn't spend too much time in there. Everytime he would raise up to talk to me, his alarms went off and I could tell he just needed to be flat. So there I was talking to him with a catheter bag hanging from my IV pole which had 3 bags hanging from it. "Ain't we a raggedy ass bunch!" was all I could think. I saw Coach too. She will have a story to tell also, but I didn't know where she was in the hospital. She and her husband are soooo very nice as is Tracy.

On to the goods: So after finding out that he suspected my valves were not functioning, he 'went around' them and tried to get flow, and sure enough, the valve did not open. So he puts a balloon in to see what it's going to do once it's open, which BTW hurt like hell this time, and he was like a little kid. I think he actually jumped a little bit and exclaimed "that's it, there's the money shot!". The collateral just disappeared. So after having some fun with his phraseology , I pulled my hand out from under the surgery blanket for a fist bump and got promptly chastised by the nurses about the sterility and all that. I told them I was already sterile, but anyway....

Now I know I'm making some transcription errors in terms of the procedural portion of it here as you are a little goofy during the procedure, but that was basically the gist of it. I found out that last time, for some reason, I was in like an ICU lite room last time (probably just INpatient post op), and this time I was in outpatient aftercare, so there was no pulse monitor or anything and I slept like a rock for about six hours straight. I'm ready to fly home today. Last time, not so much. I ate a turkey sandwich, yogurt and 3 juices right after surgery in the room where you go while you're waiting for your actual room. Well that only lasted about 10 minutes and it was off to my room, and dinner came in not 5 minutes after I got there and I ate the whole damn thing.

So it was great, I am in high cotton right now, but I'm sure I'll come back down and find out how I really will feel by tomorrow. Right now I'm just flying high since it was such a major difference from the first time and I actually feel something (the clear headedness). I can open my mouth this time. Last time that hurt so bad I spent about a week "flattening" my food and putting it to my mouth on a fork and sliding it off with my fingers. The floor around my chair at the table resembled the 18 month olds' area. So this time I'm going to chow. I also walked out, no wheelchair. I haven't used one yet this visit, not once. It has been an awesome experience this go around and I hope I start to see some improvement, but I am going to be OK if this is where I'm stuck. I am walking very well for me and I'm thinking clear. I would still love some bladder relief, but as I've said before, make the walking better and that's not nearly as much of a trial. Seeing Dr. Dake's face when he came in was the best part. I think I caught him off guard. He just kept saying "you look great". That was pretty cool coming from him.

So I'm off to take a nap and will post more tomorrow. Remember my take on cautious optimism. I can't just take all this "like it's all good now". MUCH time has to pass and it's not like I don't have everything going on than I did yesterday. It just doesn't work that way, but I'm very hopeful that I've given myself the best possible chance to recover from this crapola. And that mile + walk I did before the surgery? Well that was real; I'm at the point where I can't just "will" that to happen. I would have been walking like a stumbling drunk and gritting my teeth to beat the band at every step a few short months ago. Just like when you haven't seen your young nephew for a few months and you're like "look how much he's grown!", but the parents don't notice it like that because they live it every day. It's like that. All the improvement is so subtle personally since there a plenty of times that I feel like crap. But when someone who spends lots of time with me but hasn't seen me in a while says "holy shit you are walking great!", I just have to take their word for it!

Last post before "going back to Cali"

2009-09-09T09:57:00.000-07:00

I take off Monday morning at 6:00am for my check up/round 2. I have levelled off improving and have even felt some worsening of things like leg strength in the last week. I'm not sure if it has worsened or if my perception has just changed since there was some improvement so it just feels worse from that frame of reference. Not sure, but I kind of feel like I did, in that regard anyway, like I did pre-surgery. Looking back at the last week, however, I don't feel like anything else has slipped except maybe that and my attitude. So I'm in a holding pattern in terms of evaluation of what this is or is not doing. There is another fellow I communicate with who is feeling more or less the same way. I can't say that this did nothing. I was sliding downhill before I recieved this as I've said ad nauseum on here. I'm not right now and that's cool. However, reading all of the people who have had definite improvement leaves me wanting that's for sure.

The drug I was on before this is called Tysabri. Google it if you're interested in what it's all about. I hadn't had an infusion in like 6 weeks prior to my procedure. Well the woman who always points me in the right direction when I'm crying "WTF?" brought to my attention a number of reports of a "rebound effect" after quitting this therapy. I about shit when I saw all the google hits when I put in 'rebound effect of Tysabri", or something like that. You see that drug was pulled off the market shortly after it's release due to some deaths. Well this rebound was reported clinically (lesion load) and anecdotally on a number of the things I read. It's not surprising that Biogen's take (the manufacturer of the drug) is that there is no evidence of this effect. However, there are more screeds describing it as genuine, so I'm going with those!

At any rate (I need to come up with a new paragraph segue!), I go back out and my Dr. will be freshly back from attending the CCSVI conference in Bologna, Italy. It sounds like that conference was just electrically charged from the reports I've read from our resident superwoman on ThisIsMS who actually went to the freaking conference! Once again, hats off to you Joan, your efforts and what they mean to people like me leave me speechless; and that 'ain't easy! So my hope is that all the collaboration and information sharing that went on there has Dr. Dake loaded for bear and itching to crack a hard case (me!). I must always keep in mind that this is all new to the doctors as well as to us. There's no "what to expect when you're expecting" book to deal with this.........yet (possible book idea Jon!). So everything is scary because you just don't know what to expect. It's a weird dynamic, but when you hear someone else say that they are having issues as well it's kind of comforting as you don't feel like you're such an anamoly; like maybe a tweak here or a tweak there will do it. So with his gained knowledge from sharing with other docs around the globe researching this, I hope he sees something and says "there it is! that's what I'm looking for!", and he would if he saw it. The guy is the energizer freakin' bunny in the OR. Infectiously enthusiastic. As I write more thoughts are flooding in, but I think I'll put the monkeys back in their cages as everything at this point is just speculation on my part.

My biggest fear is that he reviews my scans and says "everything looks good", but I doubt that will happen. I got my glimpse of a few days of functioning like I'd not done in years. I want that back, but more importantly, I want it to happen so those of us with more advanced MS can actually have a treatment option. My buddy Larry, my buddy Robbie and all the thousands of people who have this that are at the point of just watching life go by from a wheelchair, they've never had an option. Hell, people only advanced as far as me don't have many options that show any degree of certainty and I still work full time. I just need to stop because sometimes I ramble and it just looks to me like brain puke. So I'll update from California as I'm recovering in my good friend's incredibly comfortable house and hopefully I'll have some actual news and not just all my thoughts and hopes.

Weekly update

2009-09-03T05:32:00.000-07:00

I'm happy to post this week even though it won't be a very long post. I'm REALLY busy at work and have been working at home a little. I felt very stable this week with some really, really good days thrown in. I skipped my Coumadin one day last week since my blood was over thin. The next day was the best day I've had in three years. And the one after that was pretty damn good too. Then I went back on the Coumadin and feel the same as I had been feeling. That leaves me very hopeful that once I'm off the blood thinners, I'll be able to feel like I should be feeling. I'm very excited to see how I feel with no drugs in my veins at all. I just seem to be very sensitive to most drugs. Like I said before, I'd make a horrible crack head, but the thought of 0 drugs make me very, very happy. Those MS drugs; who knows what the hell they are doing to our immune systems long term.

Those two days were incredible because they were so far and above any other good days I've had in the last few years. I did twice as much, no four times as much, as I would normally do in a day. We are getting our shop really cleaned up for some high falutin' visitors, and I was out in the shop actually working with my body. I kept expecting the eyes to go out, they didn't. I kept expecting to get dizzy, I didn't. All of it. I call it the "MS cascade". That's when you start engaging in an activity and then the rest of the day you hurt, you're fatigued, you don't think clearly. Well not only did I work my butt off (for me mind you) but then I went out that night. I haven't been out, save going to friend's houses, in years, and it was a work day! I was very excited and slept like a rock that night. So those glimpses were not what I was getting before this surgery. I did nothing but feel worse all the time.

My shoulder is still out of socket, but Dr. Dake prescribed a muscle relaxer which I take right before bed and I have no pain this morning. I'm camping this weekend and that will be a great test. My last camping trip was right before the surgery and I still have a very clear memory of how fun that was (read: being facetious).

Things are different. Me and my friend Marie whose also had this are in somewhat of the same boat. We had a little more disability than the people who had almost immediate results on this. I'm glad our thoughts and the things happening to us are pretty parallel. That makes me feel that things are indeed unfolding as they should for us. I just don't know, and no one does really, what to expect and thus have spent an awful lot of time wringing my hands about when it's 'going to happen'. But things are different. My approach to lots of things has changed. Allow me to use a couple of examples. Since coming back to work there has been a common theme; I can work, but after I get home, doing anything other than watching TV or helping with dinner is about all I could do. Well here lately I've been going home and getting some things done. Laundry for example. I used to be intimidated by it believe it or not, because there are two flights of stairs to be navigated and I would usually just let it sit. I've been doing things like that. The other day I fixed my lawn mower after work, that's a refreshing change. And here's the biggie: I, and I'm sure everyone else but you just don't notice, always leave stuff that I should have brought with me in the other room or upstairs. So I had been getting my daughter and wife to be my legs. "Can you do a stair trip for me?" is a constant cry in our house. Lately I've been getting those things myself. And yesterday I walked to Walgreen's to pick up my muscle relaxer. The store is like .6 miles away from my house. Now granted a 5 year old could've kicked my ass when I got there, but I did it. It's things like that which I've been doing that are different. I haven't been really highlighting stuff like that because I still feel like ass after I do them. BUT I wouldn't have even tried before the surgery. And I still functioned and moved about quite well once I got home.

So I think things are still slowly changing, and once again, all on the plus side. I don't seem to be going downhill (knock hard on some wood) and that's just ginormous. So I'll talk to you all next week, but this week I'm just very content and feel pretty good. That's a good place to be right before a holiday weekend which I hope to enjoy camping. Wish me luck!

Another week goes bye bye

2009-08-27T16:09:00.000-07:00

Well this week has had some interesting turns. I've still not noticed any massive uptick in my functioning, but I have still been noticing some small stuff improving. I also need to say that my legs are still pretty weak and get fatigued easily and that I'm still wanting that to not be so really badly! The improvements are still all in the head affected stuff. I'm thinking a little clearer, eyesight is recovering quicker and also dizziness is recovering quicker. The one thing I also found out this week is that my blood is too thin. A normal blood clotting number (Protime, or INR) is 1. The therapeutic level we are supposed to be at for the stents to incorporate into your veins is a 2. That simply means it takes twice as long for your blood to clot than it would normally. Well mine was at 2.9 today, which is too thin. Not a big deal until you cut yourself or start bleeding anywhere because it's so hard to stop. I think the drug used to do accomplish the thinning, coumadin, also can make you a little fatigued and just feeling a bit off. I'll be glad to get off of that shit.

So my shoulder still looks like someone put a couple of rocks under my skin and it's still partially out of socket, but it doesn't hurt as bad as it did last week. That's another thing that can mask how you are really feeling. Pain. Chronic pain is no fun at all. It's not like I was in any significant pain, hell my legs hurt worse during the day, but that it was just constant and has been accompanied by a headache that I can't shake. It just wears you out and I've already spoken to the dynamic we MS'rs create: once something bad shows up in your body, it stays, or you at least think it has a good chance to. So things like recovering from surgery, which would have seemed normal if I was healthy, take on a different feel since you just don't trust that pain and things of that nature are going to go away once they show up. It all kind of "blends together" and you have a difficult time discerning what is your MS and what is your recovery. It really is a weird dynamic. I mean we live with our MS every day and know what it feels like, but it does vary so much in terms of intensity and what not that you just get to "feeling bad" and call it that. You don't say, "well my MS stuff over here is like usual, but this little headache is totally separate". It just doesn't work that way. Once again, not feeling like I described that very well, but I'm not spending any more time on it! Did I mention that I can be windier than a bag of assholes? It's true, I like to write. It's cathartic for me and I always feel better when I'm done. Maybe I'll write a damn book. About what, I just don't know, but maybe someday. At any rate, I asked one of the Italian guys who has had this done for a while now if I could copy and paste one of his posts. He said yes and it is to follow. This guy was one of Dr. Zamboni's original patients and he's also a physician. Here is what he has had to say about treating MS with this procedure. He's posted two, so I'll probably put them both down. Here's his introductory post:

I am a 63 year old Italian consultant cardiac surgeon working full time in Belfast since 1993. I was diagnosed with chronic progressive MS in 1986. It started with spasticity and progressive weakness of the lower limbs, more marked on the right side. It affected my ability to walk and control of bladder and bowels became a problem, in addition to erectile disfunction. When I met prof. Zamboni two years ago I walked with a stick, 200 yards seemed an unsormountable distance, and fatigue and back pain were a real problem. I met his wonderful team, Erika a very skillful sonographer, Annamaria competent and lovely researcher in functional assessment, and Dr. Roberto Galeotti, a skillfull interventional radiologist. In brief, Ultrasounds showed obstruction of the venous drainage from the brain at the jugular veins level, this was confirmed at angiography showing 95% stenosis of the left jugular vein and an inverted valve in the right jugular vein. Dilatation of both sites with a balloon was carried out during the same session. I experienced an immediate benefit: I was taller, the strength in both lower limbs improved, and so did bladder and bowel control. I could stop using Viagra.
I read all the papers that Zamboni and his team have published so far and from the first one I believed that he had made the first real breakthrough in the understanding the etiology of MS.
Now I have notice a slight deterioration of my condition, although I am still a lot better than before having the procedure. A check-up with Zamboni a month ago showed that the flow in the left jugular vein is still ok but there is reflux in the left one: the plan is either a further dilatation or surgery. This shows a strict correlation between venous drainage from the brain and symptoms.
Zamboni invited me to take part in the press release during the international congress on CCSVI in Bologna in September: I look forward to sharing my experience with others. I am very proud to share with Zamboni the place of birth (I am from Ferrara) and I know that his idea will change the destiny of thousand of MS sufferers. I hope that the medical profession will hopen his eyes soon.

And here's his second one:

It is time for people to start thinking.
Let us review the situation of MS sufferers before the Zamboni's revolution.
Nobody knew the etiology of MS but everybody knew the inevitable outcome. Being diagnosed with MS meant a sentence to a painful and distressing death. Neurologists and allied professionals prescribed all sorts of different treatments for a condition they did not know the cause of. These different kinds of treatment, from shots of prednisolone, interferon injections, spinal antispastic drugs, to stem cell injection have significant, potentially dangerous side effects. In spite of this patients, desperate in their quest for delaying or avoiding the disastrous end result, subjected themselves to all of these potentially harmful treatments. I am not aware of any MS pressure groups asking for evidence: beggars could not be choosers.
Now, thanks to the genial intuition of one man, a plausible explanation of the causes of MS has been put forward and it has open the door to an effective treatment (which as a side point would save the health systems a lot of money).
The endovascular treatment of defective venous drainage from brain and spinal cord has no harmful side effects and has an insignificantly low mortality and morbidity (complications).
When I was on the table for my venogram I was praying God that Roberto Galeotti would find something wrong with my veins because I was not resigned that nothing could be done for me. I nearly cried when I saw on the screen the stenosis in my jugular veins.
I believed that I had nothing to lose when I decided to have the procedure: at the worst I would not have benefited from it. Fortunately I did.
As I said before I refused any offer of treatment before since diagnosis: I could not accept the concept of treating with potentially harmful means a condition with totally unknown etiology.
Now many MS sufferers want undisputable proof that Zamboni is right before embracing a possibility of an effective treatment with no harmful side effects.
Beggars have become choosers.

Stories like this are what keeps me hopeful. He described my three "biggies", legs, bladder and bowels, and I really hope I see these results. It's hard at times being one of the handful of us that aren't swinging from the rafters, but nevertheless seeing and feeling like there's no progression going on. I had a few crap days this past week and got very discouraged. Then the last two days I had some increased ability to work a bit more and walk a bit further. I just don't know yet guys. I told myself after my last attempt at something unproven that I would never again go the route of only doing something based on what someone had to say. This, however, is different. There are papers written and actual procedures done. And I just can't wait until September 8th. The woman who introduced this to me is actually going to Italy to be at the conference when the results of Zamboni's last two years are rolled out. She's a great writer and I can't wait until she gets back with news. My pessimism about my own personal results is most definitely a coping mechanism designed to protect me if things don't go as planned. I've always been the "butter side down in the diaper pail" type of guy. By that I simply mean not very lucky. I have never won anything that was decided by chance, and am always the one that signed up that "isn't on the list". So I've always worked a little harder, stayed at work a little longer, created my own luck if you will. Well this one has me tossing about like a leaf in the wind, but there are others who've had "mild" results to date like mine and we all seem to have something in common; while that sucks that we aren't seeing the same immediate results, it does keep me hopeful as I'm not the only one. We are all people who don't have MRI's crammed with all these active lesions that are still in the inflamed mode. Two who I know of are fully diagnosed as being progressive. My neuro. suspects that I am because I progress, but don't present new lesions in my MRI and everything that comes, never goes like some people. So I think I'll just have to continue to work a little harder. I'm OK with that. I've always pushed myself hard and actually want to again. It's like my buddy Marie says, turn off the damage and then we can heal. When the source of the aggravation is still there you can't do it. Like a nail in your tire. You wouldn't patch it without removing the nail so we hope that the nail is removed. Now we just have to figure out how to get the patch to stick!

From the above copied postings it makes me think about the potential future of MS treatment. Go get surgery. Then if you start feeling "MS'y" go get your stents cleaned up. Now that would be something. If we could actually expect results from this surgery like we do other surgeries with known outcomes. So I know I just need to be more patient, like always, but it's really hard. As I've stated before, I'm right there at the edge of the disability cliff. I already have some serious physical limitations, but I can still work. That is huge to me as I was laid off for a few weeks and I didn't like the way I felt more than I missed the income. Sitting at home and being in your own world is not good for this. At least not for me. Nothing to do but think and think. Work keeps me distracted, and when you have MS, that's a good thing. I just hope the title of one of my posts soon will be "Hold on to your butts". If that happens, pull up a chair, I'll probably write all damn night!

Weekly update

2009-08-20T05:58:00.000-07:00

And another week in the bag. Pretty benign week MS wise. Nothing really has changed; which as I explained before is a great thing since I'm not on any drug right now. So my update from that is that I feel the same. Not better and not worse. While that is a good thing, the slightly subtle uptick in how I was feeling in certain areas is not there right now either. The one thing that keeps happening that is very heartening is that the people from Italy who've had this done for a while now are speaking up and it's all good news. This week we got a heart surgeon with MS who is singing the praises of this procedure. One thing to note is that it seems like almost everyone, whether they had Dake's stents or Zamboni's balloons, needs maintenance. They need periodic check ups and "tune ups". I'll take that anyday if I'm seeing positive change. That is really all I have to say on the MS front this week as it really has just been a "normal" week. Hoping for the clouds to part and trumpets to blare, but I'll take the normal over the decline any day of the year. There is one anecdote I'd like to share.

One of the first people who had this done was discussing how much shoulder problems she was having, as we all did, and I was just kind of paying attention because my neck and head and shoulder pain went away pretty quickly. Well not so fast! This weekend I started hurting again, but differently this time, and I looked at my shoulder and it looked really odd. I could see my shouler blade sticking up past my shoulder; from the front! Well long story short, I am having muscle spasms in that area and it's actually holding my shoulder joint out of socket. Not dislocated, but out of socket from the spasmed muscles pulling on it. A massage therapist could get it to go back in, but once I would move that arm, out it went again. You could actually see it moving in the mirror. Pretty trippy. Anyway, it's not keeping me from work, but it does hurt pretty bad when I move a certain way. So I will keep stretching and getting massages (torture sessions) until it goes back in. I have my follow up appt. scheduled for September 15th. I'm sure I'll have a lot to say after that. I also have a heavy heart this week as one of our original pioneers that had this surgery passed away this week. She had a hemmoraghic stroke and passed away. It was not related to the surgery, but it still makes me very sad as she was an incredibly positive and supportive force in this effort to get out the word about this procedure. She will be sorely missed and my heart goes out to her family.

So I hope I have more to post next week. This is my 'blah' post with nothing much of substance, but I have been holding myself to once a week and I plan to keep that up.

Lew's screed on why the hell I'm doing this

2009-08-14T11:17:00.001-07:00

I don't have to work this afternoon so I thought I'd write something on the blog of substance since my last post was a cut and paste job of my email to my Dr. Dake. So why in the hell am I willing to let someone cut on me and do this when all the magazines I see show all these shiny happy people on these medicines? The answer to that is to follow and also why, as Hillary says, "I'm in it to win it".

Let's start by a little talk about what this shit actually DOES to you. Most of you know me and see me and know I don't "look" handicapped or even sick. However, there is so much that you don't see and that's what the MS community calls invisible MS. There's even a movie out there called "But you look so good?" that follows a few people around who have MS so you can see what they deal with. I mean I'm obviously not going to intermittently catheter myself on the deck when we have company, I'm not going to use a laxative suppository in the front yard, and you can't 'see' pain, weakness, dizziness, lack of hope, and the fear that comes from not knowing. The fear that you get when you start having a relapse. You think "when is it going to stop? Is this the one that takes out my legs? Is this the one that makes my arms useless? Is this the one that's going to make me a prisoner in the house?" All that shit works on you. Even more so when you have symptoms that you feel all day long. And this son of a bitch is relentless. Yes you can have "good" days, but it really never takes a break for a good deal of us.

So every day I have to stretch before I move too much or everything just "yanks up tight" in my legs. Next is into the shower where it sucks because I can hardly stand to be on my feet for 10 seconds without shoes on. Flip flops in the shower? Not an option. The way they move around makes the arch supports feel like a rock and the flat ones you step "off of" and it makes you fall. Then it's into the cold shower because if I take a warm one I can't see to shave when I get out. So I step out and immediately step into some running shoes (cruel joke calling them running shoes). By this time I'm usually good and dizzy and fall into at least the door jamb if not the walls trying to put stuff away. Then it's time for the 'ol pee straw. Let your mind wander, but I do this 3 times a day. Then it's down the stairs where I usually can feel if it's going to be a "good day" or a "bad day" based on how bad my hamstrings and calves scream when I'm going down the stairs (which has been getting better; good thing). Then the ride to work. It's the only ride I enjoy because I know I won't have to pull over in front of somebody's house to pee behind my car door; thank God I'm only 5'8" tall. On a side note, I've been busted doing this by the Ohio State Highway Patrol and he absolutely berated me about "what if a grandma drove by?" until I told him what it was all about, then he had some mercy and didn't write me an indecent exposure ticket. Ask my family how many times I sometimes have to do this.

OK, now we're at work, "stayfree penie pad and all". I know sometimes this is TMI, but I'm trying to educate here! I usually will turn my computer on before I have to take the fun step of a suppository. Once again, I'll spare you the details. Then it's just hoping it works. Meetings are great fun, especially when you're the one holding the meeting and have to pee about 4 times in that hour (that's not an exaggeration). As the day goes on I will eventually have to walk to someplace in the shop. I can do it, but what you don't see is my legs screaming at me to get off of them and stay off for about a 1/2 hour. As I've noted in earlier postings, my recovery time is getting better and that's very welcomed. Lunchtime! This has been MUCH better since the operation but before then it went like this: Walk to car, this act made me dizzy and have poor vision. Go get food, walking into place to eat makes me more dizzy. Take food back to work, be dizzier, eat sandwich in about 1 minute because I have to cram it in fast because I'm nauseous. Once again, this is getting better since the surgery (grateful!). So the things at work that suck are the constant interruptions from my bladder as well as the dizziness and crappy eyesight and the leg strength is a major impairment because I can't do my job nearly as effectively as I should because I can't stand in the shop for long or walk very far in it. Plus if I forget something in my office and have to go back, that sucks really bad also. This whole time something called brainfog is getting worse; you lose the ability to focus and stay concentrated. I have to write down even the simplest of tasks by lunchtime every day.

Go home and it's much of the same, but now there are stairs and things that need to get done that I have no energy left for; and I'm supposed to exercise! I usually do some of them anyway and pay for it by almost falling down the stairs (that's gotten better too!) and having my legs hurt so bad I can't explain it. I'm running out of energy just talking about this so I'll wrap up quick. Then we eat and it's the same thing as lunch time, but by this time in the day, the energy of eating makes my eyes go out worse and makes me REALLY dizzy. Then I have to stop drinking at 8:00pm so I won't pee the bed even with a nighttime intermittent catheter job. Bedtime; pee straw first, and then into bed. Sweet relief! But I have a beautiful wife that I want to show some love to quite often. Will it? Won't it? About 90% of the time the fatigue and pain are too much to even ask the question. The rest of the time it's about a 50/50 gamble. I wish it weren't this way baby!

And there's more that's a little more personal even for me. It's so regimental and you pay for it when you deviate. Suffice it to say that this isn't a complete list and I didn't write it to have people say "man, I never knew" or "wow you have a lot to deal with". You don't look at it like that, you just do what you have to, but after this many years I must say it does suck ass to deal with. Keep in mind that as the day goes on, everything, and I mean everything gets harder as time passes. It doesn't change at that point until the next day. I don't want sympathy for any of that. I just wanted to let people know who may think "why would you go through that surgery, you look fine?". Well think every day, and some days it just gets overwhelming, i.e., the things you have to deal with take more time than the time you have to be productive. And I also need to point out that it was getting worse almost daily. A little weaker, a little less bladder capacity, a little less everything. I also didn't even talk about the mindfuck and how you can't stay focused and you can't just go from pissing your pants to presenting a proposal. If it were easy to just put it in a box and get right back in to what you were doing it would be awesome.

I'm not done, I could go on ad nauseum, but I think you get the point. All of this culminates until you start to lose your sense of self. I was very comfortable in my own skin before MS, now I'm not. You can't do the things that made you feel good about yourself. So you start having low self esteem and everything you do to try to get it back is nuts. Everything looks different, feels different, it's hard to explain but I'll know one group of readers that understand it implicitly. And all of this hits you right in your prime. You're just getting it figured out to the point where you aren't screwing things up with poor decisions. You are usually raising a child and in the peak of your career curve.

Losing the things you love to do sounds kind of benign when just spoken. When lived, it sucks a bunch more. I can't do anything physically anymore, that's a given, but it's even hard to do things of leisure, like camping, just going out, things like that. Golf, could there be a less cardio sport? I can't do that because a couple of swings is all it takes to put the wheels of weakness, dizziness, pain, bad eyesight and other things in motion.

Here are some of the reasons why I'm doing this and it's all in response to not having to deal with this anymore.

Number 1

The drugs with all the shiny happy people in the ads are absolute shit once you get to a certain point. They advertise some small percentage of efficacy, but that's always on newcomers to MS, never on people who've had it long term. And anyone with this disease knows that the first few years are usually pretty mild. My heart goes out to anyone who gets slammed with refractory RRMS. That's a type where the attacks are very severe almost from the word go. I'm fortunate not to have that variant. The trials were all done with newcomers and next time you happen to see an ad for one of the drugs, look for the fine print describing the person in the ad touting the benefits. They'll usually say something like "Kim, 34 dealing with MS since 2007!". Well whoopdee shit; two years out I guarantee I could have outrun, outbiked and outworked 90% of the people I know. That's not me saying I'm all that, it's me saying that the beginning of this disease can be pretty mild for a lot of us. It's all about luring in new patients who are wide eyed, ignorant of the facts of the disease, scared shitless and looking for the answers they usually get at the doctor's office.

Number 2

My jugulars are clogged, they shouldn't be even if I was healthy; next

Number 3

You could put stents in my veins that are perfect and it's not like it would harm me. This isn't an experimental drug where you don't know the side effects. The side effect with this is post surgery pain; something you get over.

Number 4

The etiopathegenesis of this disease is very poorly understood. Even though it's not what your neurologist will tell you, autoimmune is a theory. The antigenic target is not known (thanks Marie) which makes it a theory. Hey, I'm not saying it's not correct, but it's not proven. Showing statistical relevance (enough to get approved drugs) with a bunch of new patients is not a big deal to me.

Number 5

Right now (before the surgery) I was getting worse non stop. I want it to stop and I've been on Avonex, Tysabri and Tovaxin. None of them kept me from having relapses. So why should I keep taking them? They 'ain't free that's for sure and we don't know their long term effects and you're supposed to be on them for life.

So there's my "everybody gives a shit about what I have to say" screed about why I'm doing this untested procedure. The internet forum I frequent; http://thisisms.com has a posting from one of Dr. Zamboni's original study patients. Apparently they are now allowed to talk about it. Some of these folks are 18 months out from the procedure (slightly different, they used balloons, but will be getting stents soon I think) and doing very well. I won't comment on someone else's condition without asking them so do yourself a favor if you're curious and check it out. You register, go to forums, scroll down to CCSVI and the one I'm talking about is under the heading "Press Release Bologna (that's a city dumbass, not a lunch meat!) September 8th". The part in the parentheses is not there! So later until next week!

A week with not much to say really

2009-08-11T16:14:00.000-07:00

I went back to work last week and that was the real litmus test of whether or not I have gotten significantly worse from the relapse I had before the surgery. I'm happy to post that I did just fine. Nothing better or worse than before I left, so that's good. The dizzy thing at lunchtime, and at other times, is still better and that is a Godsend. I thought I'd copy and paste my correspondence to Dr. Dake this week to describe exactly what has been going on with me. Like I said, nothing much has changed. The reason why that's a good thing is that I had to alter my immediate expectations of what this will or won't accomplish. I have been reading the different accounts of others who have had this done and did the only thing I could do; compare! Well about half of the original "stentoneers" have not had this crap as long as me and have experienced some almost immediate relief in heat tolerance and the like. I know I've spoken of it before, and it's still the same.

So take a look at what all the drugs are really supposed to do anyway. They're supposed to keep you from progressing. After 8 years of MS and climbing about halfway up the numerical disability scale (the EDSS), if this stops my progression? That would be a dream because it won't involve incredibly expensive medicine for the rest of my life that states, and I quote "The effects of Tysabri have not been studied on humans for any more than two years". OK, that's not verbatim, but it gets the point across. And it keeps killing people. The odds are like 7500:1 or something like that, but still, the risk is there. My feelings about all of those drugs are well known and I know I've described them before so I won't belabor the point. So I feel kind of stable and undizzy and still sleeping better and not peeing the bed; bonus! Hey, I know that kind of shit is personal, but if you have MS, odds are you deal with bladder issues in one form or another. So since the creative juices are simply not flowing tonight, I am going to go ahead and copy my email to the "wizard of Stanford". Word is that he's formulating a trial for this procedure. Just like the MS drugs, it seems to have a more profound effect on people who have not had MS for many years. It would be wonderful if you could get diagnosed, and then just go get surgery. How cool would that be? Well anyway, like I said I'm just not in the writing mood tonight, but I have to keep this up, so here's what I wrote to Dr. Dake today:

Dr. Dake,
Weekly status report from Lew Chapman.
Week 4
I don’t feel all that different than I did last week, and that in and of itself is a good thing. I’ve had some good things occur when I expected to be dizzy due to exertion and didn’t get dizzy. I’ve also had some similar things with eyesight, but since my ON is still flaring up when hot, and my dizziness also when hot, I can’t say that it’s anything to speak of. I have tolerated going back on the coumadin just fine in terms of the rash. I got my INR checked this morning and told him he could still adjust upwards on the dosage because my rash has not returned at 1 full pill one day and one ½ pill the next. So if he has to crank it up to get to a 2, I told him that would be OK. But since I was at a 1.2 level on ½ pill daily, maybe it’s correct now, but I just have a feeling that he will want to crank it up so I’m ready if need be.
Some subtle things do feel to be functioning better to me, but they are subtle so take them for what they’re worth, but I’m a pretty self aware individual and my feeling is there has been some real change. First off, let me discuss the things that are no better and no worse. They are as follows:
Heat tolerance – not better in this regard. However, I do feel like I am recovering faster from the effects of heat.
Bowel function – no change, constipated all the time.
Bladder function – no change in terms of voiding volume. However, I have had only one night time accident and I even told my wife “I’m probably going to pee the bed tonight”, as I drank much later than normal by about an hour and a half.
Energy level – unchanged
Leg strength – unchanged. This basically means that I can still only go for about a 1/8 mile continuously before the wheels fall off and I need significant rest to do it again; it doesn’t truly ‘reset’ until the next day.
Things that I FEEL are slightly getting better:
Balance – I have been putting on my pants the old way; ie, not hanging on to something, or sitting down to put my legs and feet through and then getting up to pull them up. This, however, sometimes has me stumbling but not falling, but I can do it more than I used to be able to. But then again I’ve been TRYING this, so take it as you will.
Dizziness – this is a biggie for me. I don’t feel as dizzy as often. Every day around lunch was a guaranteed time I would get dizzy. Every day. It hasn’t been happening here lately. I still do get dizzy however, but once again I feel like I recover quicker.
Eyesight – my eyes don’t “go out” as often as normal. It was taking almost an insignificant amount of effort (like eating or having a semi loud conversation like in a crowded room) to make my ON flare up. Now it seems to take more effort for it to do so.
As I’m writing this, I’m noticing a trend. All the stuff that I perceive to be getting better is all “head stuff” and the other stuff is more functional system stuff. Maybe I’m wrong on that, but it does feel that way.
My neck and shoulder pain are manageable. I haven’t taken any pain meds for about a week with the exception of a couple of Advil from time to time, so that’s good. My spirits are good as I have lowered my expectations for this. Allow me to explain; I have taken to expecting my progression to stop sans drugs. If the CCSVI procedure does that, that is an enormous success. I needed to quit thinking I was gong to be running again; who the hell knows what type of repair will happen, but even if it works out that way, I don't think it would happen this quickly. To think that I’d get back to normal may not be realistic seeing as how I’m a 4.5 EDSS’r and I’ve had this for 8 years now. Also there is the distinct possibility (who really knows on this?) that I am SP. I say this because my neurologist (new one who ordered the latest MRI's) is saying my MRI is pretty unremarkable. So undoing damage is probably more up to me if we did indeed “stop the bleeding”. That is my hope now. We can get used to anything. People who get disabled from an accident or something can adapt because their baseline isn’t always changing. Ours is always getting worse, and it’s so hard to keep adjusting to be able to live your life once you’re saddled with a certain amount of disability that just keeps changing. So if we could shut of the damage spigot, I think I could adapt and even overcome some things. That’s my hope anyway.
I look forward to mid September (our follow up time) and will keep sending you weekly updates. Hopefully you’ve encountered so many different scenarios by that time that my “bucket handle” collateral and my “pancake jugular” will be old hat to you and you can just “cut with confidence”! OK, I know you aren’t cutting us, but you know what I’m trying to say.
I just got back from a big grocery store I frequent to get fresh fruit at lunchtime. It’s all the way in the back of the store and I inevitably get dizzy and have poor eyesight just by the act of retrieving my lunch. I feel pretty much the same as I did when I left to go to the store and that’s an improvement since it also happened that way all of last week. So the new mantra for Mr. Impatient Lew is “there’s no progression...... like no progression!”
Take care and have a great day,

Lew Chapman

So even though I repeated a few things in the opening paragraphs, that is pretty much how I communicate with Dr. Dake. He's a busy dude so I think email is better since he can just get to it when he has a minute vs. a phone call. I promise I'll get more philosophical and write more next week. It's so cathartic for me, but my daughter is getting a bass lesson and I want to go and eavesdrop!

Another week in the books

2009-08-05T16:09:00.000-07:00

So here we are three weeks out from surgery. Do I have a lot to tell? Not really. I'm back at work, so that's a good thing, but things really haven't changed much to speak of since "the tilling incident". I'll post about a positive thing that has happened, but I need to be cautious since these are just things I've noticed since getting back into the routine of work. I don't, and won't, say that anything has 'worked' until it stays with me for about a month. We all know what a roller coaster this disease is. My neck still hurts, as does my head when the neck starts hurting. And I can't take much for it since all the anti inflammatories are somewhat contraindicated with Coumadin. Oh yeah, I'm back on that stuff that gave me a rash. I went to get my clotting levels checked and they were totally normal. Sounds good huh? Well not when you are supposed to be at a therapeutic level that is a 2 (takes twice as long as normal for your blood to clot) and normal is 1. After I found out the price of my only alternative, a drug called lovenox, I decided to risk the rash again. I was having all kinds of bad side effects and reactions all at once when that rash came on, so I decided I wanted to chance it again since it was just a nuisance and not causing any anaphalactic (sp?) type stuff. Well I'm only taking 1/2 a tab and will find out tomorrow if that is getting it done.

So the positive change is a very subtle, yet very exciting thing to me personally since it's one of my truly shitty symptoms (like any of them are good!). Ever since I have had dizziness, about 4 years now, it always seems to crank up at certain times of the day that usually coincide with increased activity; imagine that. Well lunchtime at work is one of those times. The getting up from my desk, having to go somewhere that involves walking, and getting back to work virtually always makes it crank up to where I force feed myself my lunch every day; even at home. So for the past three days, it has not come on at all during lunch. It has been heartily enjoyed as I actually enjoyed my lunch these past few days. Anyone who has this fun filled symptom hates it with a passion. I spend a great deal of time with my eyes shut and my hand over them trying to get things to stop spinning for a while when this happens. Just ask my wife what I usually look like when I'm eating. It has become a task of necessity, not of enjoyment whatsoever. And when I have to grill something? Get outta' here, I just grin and bear it and hate every minute of it. So I say this very cautiously since I still am getting dizzy at times throughout the day, just not as much. Real? I don't have a clue, but will keep posting about things as they happen. I will also always retract anything that goes 'back to normal' again. So any positive thing you see me post about, I'll take back if I have to. I'm not selling this procedure, just reporting on it. I feel almost dutiful about is since there are basically no alternatives for me and plenty of others anymore. We know the drugs don't work, so this is it! I even went off the Tysabri and haven't had an infusion for about 9 weeks.

So it's a semi-reluctant post this week since I don't have any good stories to tell. That is a loaded statement however, since no change with this shit is A-OK in my book. Keep me the same for a while, and I can get used to my state. That's what sucks about this. It's not like it's an injury where you can get used to your new disabled state of being and adapt and it becomes your new reality. This son of a bitch just keeps getting worse. Once you get used to what is going on, it gets worse. It saps you of hope, it saps you of lots of stuff. But we have to persevere and not getting worse while not on any drugs is maybe not a home run, but it's at least a double. Like I said though, if I get worse, you all will be the first to know. I owe it to every one who is reading this, especially those of us lucky enough to have this shit. The other thing that I have been THINKING that I've been noticing is that I seem to be recovering from a lot of walking faster than before. I hesitated to even write that since it's just a feeling, but it feels that way, so I'll mention it so that I can kind of drive a stake in the ground and see if it gets better or worse. I'll let you all know.

The last thing is that my 'check up' is scheduled for Sept. 15th. You all remember me posting about my weird left jugular that we did not operate on. Well my Dr., armed with 20/20 hindsight has expressed some angst about not doing that side as my heat sensitivity didn't improve quickly like the others have seen. But it wasn't anything he should have done. These are uncharted waters we are in and he is learning and we are his teaching moments. So when he sees me again in Sept. he will analyze that side full on and will do what it takes to get the flow right. Could that mean all this fun post surgery stuff again? It sure could, but I have to do it anyway. Hey, I'm all in. The very first guy that had this done that has seen a lot of very good results needed some clean up in one of his jugulars as well, so I could be fully blocked again and not even know it. This is all just so new, but it's really gaining steam. I hope and pray every day that this is it, and am almost Eeoyore'ish about it (new word! you know Winnie the Pooh's negative donkey friend) since I really got burned with the stem cell thing. I was micro analyzing everything and posting stuff that would just happen one time like "I stood on one foot in the shower today!". Well I was TRYING to stand on one foot to see if I could. So while that was viewed through rose colored glasses, this one is being looked at through shit stained glasses. If it's real, it will shine through eventually, but I'm not about to take that fall again. It's like I said in my first post, I haven't even allowed myself to fantasize about this working. The let down is just too great. So I'm just living my life and if after some period of time I notice "hey, what was that?" then that will be just jim freakin' dandy.

Not getting worse and some things maybe getting a little better are probably more realistic expectations than the clouds parting and the trumpets blaring so that's where I'll leave this one in terms of "new news and changes". Stay tuned for next week's post and keep your prayers going and your fingers crossed that I have good things to say by next week. I don't imagine it's going to happen that fast, but like I said, cautiously optimistic is the approach I'm taking. It's so strange to even fathom not having this disease active anymore. As I already said, I don't go there concerning the "things I'd do", but just thinking of that pragmatically is just hard to do, almost like I can't anymore. I don't even have dreams where I'm healthy anymore. Occasionally I'll have one where something that doesn't work right, works right. It's usually my bladder, and I just dream I'm going like I just had a 12 pack. And then, inevitably, I wake up with wet trousers. That also hasn't happened since I've had the operation and THAT is huge. Sometimes I think about the movie "Awakenings" with Robert DeNiro. I know it's probably taboo for me to even bring that up, but I was thinking it so I may as well verbalize it. That's my greatest fear about this. So you can see, my head is all over the place with this. I won't kid you, it's caused me to think about my MS much more and I hate that. However, the potential to not think about it because you're not experiencing it is why I jumped in. I sometimes re-read what I wrote and want to delete it, but what the hell, this time I'm letting the thoughts fly out and see how it goes. Now I know my friends and I know Geno will probably say "delete that (insert expletive of your choice here)!", but this time I'm not doing it!

Some positive changes and some really bad judgement

2009-07-28T06:54:00.000-07:00

Well it's my two week anniversary of the surgery. It feels longer than that, but it's not. There have been some positive changes that I definitely want to post about because they have taken place in my "100% symptoms". Those reading with MS know what I'm talking about here. Since this disease is characterized by good and bad days in terms of level of function, there are some days where you can do more than others. But we also know that there are those symptoms that are always there no matter how good or bad you feel. For me two of those are my eyesight and my balance and coordination. Every time I get hot, my eyes go foggy. It looks EXACTLY like this: http://mult-sclerosis.org/opticneuritis.html . I mean exactly. The car on the right is when I'm not hot, or even warm, and the car on the left is when I'm hot. It does vary in terms of intensity with how hot I am, but it's never not been there. Not one single time in 8 years. Well this post is all about both a positive change and this is also where the poor judgement comes in. By the way, if that link doesn't work, just type it in; what are you lazy!

So my wife is planting about a 20 x 20 flower bed and the ground needs to be tilled. My good buddy has a nice tiller that he will let me borrow, so I volunteer to go get it. I would have asked him to deliver it a few months ago and that's the truth. So I get it home, we get it off the truck via ramp and I get set to show my wife how to operate this big boy safely. Well after I have her pull the start cord (not supposed to do too much with the right arm since that's the sore side, duh) I decide to demonstrate how to horse it around a bit and was just taken aback that I could even do it. My wife was kind of slack jawed and telling me to not continue, but she's amazed also. So I do the whole damn thing. It took about 45 minutes and it was in the direct sunlight and was in the low 80's temperature wise. Well I'm covered in sweat, and guess what? I could see just fine. I mean not even a little fogginess. Now my legs were absolute toast, but I didn't care, I could see and was hotter than a firecracker. Plus, I do really poorly on uneven ground, and I was MAKING uneven ground and walking all over it and not falling over. It was awesome. My legs even recovered rather quickly and I was very, very happy about all of this. So it ends up being a great day. I took a walk later in the day (that would never have happened a little while ago) and I was never dizzy the whole day (that has happened, but rarely, and never when coupled with this strenuous of activity). That is also my almost constant companion. And then later in the evening at bedtime? Let your mind wander but no pharmacologicals were required, 'nuff said.

Before I get into how that was really stupid, I want to talk about changes that I've noticed in my balance. When I go up stairs, I just kind of fall into the right side wall and rub all the way up. It's either that or have two tracks up both sides from my hands because I don't do stairs with out holding onto a wall, a rail, or on all fours. My wife is the one that pointed this out to me. I have just been going right up the middle for about a week now. And I also don't do the 'one stair shuffle' where you just do one stair at a time with both feet being on each tread before you do the next one. I've been doing them like normal for about a week. And I've been dizzy far less often. This is all really good stuff for me. Oh, and I haven't had an 'accident' since the surgery. Not even at naptime which is a bad time for that. So I am seeing some things in the areas that aren't just me looking for stuff to get better. I can't will my eyes not to go foggy. I haven't been able to will much of anything for a while.

So now the stupid part. I am so sore in my head and neck it's not even funny. I even broke down and took a percocet, but I coupled it with some nausea medicine and it actually didn't make me that ill. So I'll pay for that, but hopefully only for a day or two. Last night my head and neck hurt so bad it was like a couple days after the surgery. I'm typing this, so hopefully I just made myself sore and didn't aggravate anything. Why do I do shit like that? I was doing so good taking it slow, and taking "baby steps" as I know I should; taking multiple short walks to keep the legs moving and not lifting anything. Well I wasn't lifting the tiller, but people who have used one know it's not exactly mowing the lawn. It must be something in my psyche; "hey this doesn't hurt! Let's overdo the hell out of something!" Not wise and I'm pretty upset with myself, but hopefully it abates today. Like I said, I'm typing this, so it probably was just sore, but last night that dude really hurt. I am not returning to work until Monday of next week, so hopefully I get "unsore" and can post more good stuff; that is of course if things keep going in that direction.

Important link to symposium paper

2009-07-24T05:33:00.000-07:00

Here is an important link to a paper of Zamboni's findings for free.

http://www.fondazionehilarescere.org/pdf/CX.PDF

I haven't read it yet, but will do so promptly!

It's been a week

2009-07-23T14:13:00.000-07:00

So I felt compelled to post. I'm not feeling any relief from MS symptoms yet, but it's been such a short period of time, plus I had a bad reaction to the Coumadin (warfarin). I got a 3 day rash that started on the 5th day post op. I started just scratching my hairline a little bit, and then I kept noticing that I was scratching everywhere on my torso. So I lifted my shirt up and voila! a rash! Well it's the third side effect listed on mayoclinic.com under "non-common" side effects. First the morphine, then the percocet, and now the warfarin. I'd make a horrible heroin addict. Well it's like I said in terms of my MS. I really don't feel anything yet. The neck and head pain are cut down big time, but there is still some pain there, but totally tolerable with tylenol or ibuprofen. Ibuprofen isn't a good one when you're on warfarin, so I tried Tylenol since it isn't an NSAID. It worked, but it doesn't last very long. I never liked that stuff for headaches either. I wish I could just take my 800mg Ibu's and get on with it, but the stents need your blood thin, so I didn't.

With all the pain I was feeling, and not being able to tolerate the good stuff, and then having to go off the warfarin because of the rash, I got a bit discouraged. I did because I had been reading other's good results with clarity of thought and heat tolerance that happened right out of the chute. But there's a catch there. Those who have had some relief in those areas have not had it for 8 years, nor did they have as high an EDSS score. BUT, they each had severe fatigue that affected them a great deal. My one friend, whom I'll call M since I didn't ask if I could post her name, is like the energizer bunny now; running AFTER work, changing tires, and is back to work. Now that speaks. She did have low EDSS, but that test is so misleading. Let's say you can run, jump, see well and walk a straight line. You'll have a low EDSS. However, if you need two naps a day, can't concentrate and can't keep your occupation because of crushing fatigue, then your MS is no less debilitating to your quality of life than someone with a high score that can't walk very far, but can still focus at work and doesn't require lots and lots of naps. That's the goofy thing about that measuring stick. There should be some sort of "life impact scale". But there's not, so I'll just speak to years with the disease. By the way, I mentioned that it was more than one. The other guy had the same thing, really bad fatigue and headaches and a pretty good case of depression. That all seems to be abated for them. That is wonderful news to me.

A friend who frequently calms my soul explained it to me in terms I'd like to share for what I'm hoping for. The thinking is that remyelination should be happening in the damaged areas once the reflux is corrected. Remember that the reflux 'fills your head with deoxyginated blood'. Your immune system is in there cleaning up from all the cellular death (these are called macrophages). This keeps the oligodendrocytes (your CNS repairmen) out. The clean up crew has been in there this whole time cleaning up the dead cells. The theory is when we are young, your repairmen can stay in front of damage that would result in an outward expression of symptoms. Once that scale is tipped, BLAMO, you have MS and it is a constant struggle with the immune system winning out over time. We also lose something called plasticity as we age, which is simply the ability to repair ourselves neurologically in a hurry, so it makes sense on that level that we don't start showing symptoms much earlier. So you need your oligos (repairmen) in there and you need the janitors out as they are a sign that damage is still occuring. After all, they aren't supposed to be there in the first place, but throw in a bunch of cell death, and here they come. Most people understand strokes, where your blood (oxygen to your brain) is COMPLETELY cut off by a clot on the feed in side. So you suffer brain cell death at a hugely accelerated rate compared to something like this. In this case, your brain is getting oxygen in, but once it's used up, it is refluxing back into your brain when it should be draining down your jugulars. So you still have oxygen in there obviously (hey, we are still alive!), but you also have hypoxia.

So it stands to reason that for someone who this has been working on for a while, may need more repairtime. And it might not all get repaired as most of us dread the thought of actual nerve death. Don't know if I have any of that, but it will take more time for me to see anything, at least that's the story I'm sticking too. There's another fellow whose had this done who had a screwed up bladder like mine. Those who know me know that my bladder has kind of taken over my life. Well his reports on that front have me green with envy. He spoke of sitting through a 2 and a half hour meeting the other day, where that would have simply been impossible before. I know exactly what he means. The only way that type of time passes for me without using the bathroom is to not drink for hours, then use a self catheter, and then hope for the best. I want me some of that.

And so I post because I'm antsy even though I have nothing to report but a greater understanding of what I could expect if all goes well. The seeing stars thing when I raise up from bending is still gone, but I think that was a direct, first tier symptom, of the reflux. Hopefully more to come, and more good to come.

So the procedure hurts

2009-07-19T16:59:00.000-07:00

Well I thought I should post something since everyone knows I'm done. However, sitting at the computer is akin to having someone give you the Spock neck pinch X10. They told me it was major surgery, but those of you know me know the ants in my pants and I want to get back to it straight away. At any rate, this will be brief because at present my neck and head hurt so bad that it's over riding anything positive I may be feeling. And Erin, I will answer your email first thing. Out of everyone I know with MS, and I barely know you, I want this to work the most because of you. I'm a Dad, what can I say? The way everyone speaks of you and the few times I've just briefly met you make it break my heart to think of you with this so young. I don't want to make you forlorn, but that's the truth. I think in a lot of ways that's why we are all doing it. Absolutely the motive has a massive amount of selfish impetus. But there's also an altuistic side to it that sometimes helps when this pain is sucking!!!

It does hurt like hell at times, but I'm a pain wuss. I like feeling good. My good friend Joan reminded me that the dynamic we who've had this for a while have created probably isn't helping. Her husband verbalized it and it helped a lot. Those of us who have MS pain are used to "oh shit, here comes some more pain I'll have to deal with for the rest of my life", so we view it all that way. Bad things that happen stick around. Once again those who have this crap will understand that inherently. I thought there was a chance I'd be back to work Monday. Ha! Well there is only one thing I've been noticing and it's even with the pain; and it makes perfect sense for how I understand CCSVI. I can't catcher's squat (i.e. lift with your legs, yada, yada), so I bend at the waist. 100% of the time my vision will start to close in, to pulse with my heartbeat and I will see stars and swoon a bit when I get back upright. That effect is greater if I'm bent down looking for something for a while. It also "trips my trigger" to start being dizzy and the dizziness just increases through the day. Well that seems to have taken a break. I hope it's gone forever, because being dizzy all the time, and at times "can't do anything dizzy", is for the birds. At any rate, that's very preliminary but seems to be gone.

There is one other thing I'll mention, but I haven't been using my legs enough to know if this is really happening or it's just part of my slothishness (hey, it's a blog, I can make words up). My legs used to tingle from ass to ankles after very little use. This was the start of them getting to the point where they hurt a lot and where I started limping. I haven't felt that tingling yet, but I haven't tried to walk around the block either, so take that with a grain of salt. Well Barry Bonds is beating on my neck with a Louisville Slugger, so I'm signing off.

It begins again (I hope!)

2009-07-15T17:18:00.000-07:00

Well I made it through. Dreadful night and morning as we discovered, on the fly since I'd never taken either one, that I don't tolerate morphine or percocet well. So I'm doing my recovery with Rx Motrin (woo hoo!) But since they were allright until I sat up and all the blood rushed out of where it was pooling in the supine postition, I'll maybe take a percocet tonight as the Motrin isn't as good on the neck pain, which absolutely sucks, but the others before me only took a week or so before most of the pain lapsed and reported that it was better each day.

So to say that this was a trip would be a massive understatement. I felt like I was on the set of "House". There were TV monitors all in front of the doctors and they didn't even look at me! It was wild. And you're awake so you can hold your breath when you need to and things like that. They go in through your groin (no jokes Beek) and when they put the stent in you can hear it from the inside of your ear! I needed two stents in my right jugular and had a weird anomoly in my left jugular that he is leaving alone until my 2 month check up. This guy is a world renowned interventional radiologist, and he'd never seen this particular deal. Don't I feel special. Well all I can report on is that I'm recovering from pretty major surgery now. Nothing like getting your ribs cracked, but it was 2 and a half hours long and you are absolutely whacked when done. So if this helps my MS, I won't know for days, except I may venture out in the heat and see how I do tomorrow. That's probably not wise, but I feel so much better than I did this morning, it's sort of energizing.

My neck hurts like hell right now so I'm not going to post much, but me and my mother chronicled it all with pictures and everything so when my neck is up to sitting in front of the 'puter, I'll post more. I feel sort of narcissistic posting about all this that's happening to ME. Like I am all that and anyone gives a damn. However, I remember hanging on every word of Tim Wesner's blog detaling that stem cell trial that I was in that flopped. If the 400,000 or so folks who have it are as non-plussed with the current therapies for MS as I am, then I actually feel sort of duty bound to share. If this actually works? I don't even let myself fantasize about it as the fall would be just too far if it doesn't. The only things that sneak through are thoughts of what I could be again to my beautiful wife and daughter. I love them like I didn't know was possible. But I suppose since I did that and am now doing this, that if it doesn't work I'll just say "NEXT". You have two choices with this shit. Stay uneducated about the new stuff, or just take the oh so marginally effective FDA approved therapies that don't do anything for people with advanced MS and watch yourself detariorate with a ringside seat. Looking back, there just aren't too many people who have advanced MS that WEREN'T on the therapies and look where we are now. In the proverbial shitter. So as I have described my take on hope, I have to live it and the current drugs don't give anyone who's had MS for years any hope and they cost a fortune. When stuff like this gets posted on the MS forums that are moderated by the biotechs, they delete them. They are just SO all about patient care, eh?

Well I got 'em

2009-07-13T21:58:00.001-07:00

Well I have clogged up jugular veins! My azygous vein is normal, but my right jugular is basically shut, and my left is "flat". It also narrows significantly, but still has some bit of flow. He's going in tomorrow at noon to put the stents in. I can't wait to see if this has a positive effect on my disease. Stanford is a wonderful place. It really is. Great people and the Dr. is incredible. He talks to you like you would talk to one of your buddies. And I saw no less than three placques that said "summe cum laude" on them. I can't see that well so I didn't get the details, but the guy's brilliant.

He came in and we talked and he was very honest. He told me if I knew of the immediate improvements that most were seeing and he was like "I dont' know what's what yet!" Quite refreshing from a Doctor. Most of them have to be in the in charge role and he was just extremely pragmatic about this being so new and untested. He didn't once allude to anything that I should expect or anything. But as I've said before, my expectations are simply to wait and see. So I'll post tomorrow if my neck doesn't hurt too bad about how the surgery went. I'm absolutely beat but wanted to update tonight about what happened today. I't's 10:00 out here, but my body still thinks it's 1:00am!

Reality time and thoughts on Laetril

2009-07-11T08:12:00.000-07:00

OK,

This is it. I'm leaving tonight and am anxious as hell. Some might think X-mas morning type of excitement but they would be wrong. I have no idea what this will result in; we need to all understand that. I am looking on this with more than a healthy dose of skepticism bourne from 8 years of crashed hope and unfulfilled expectations. More like an anxious spouse waiting for news on their other half's heart surgery. Not having a clue, awfulizing, fantasizing about what it would be like to be able to pass a sobriety test sober and everything in between. Make no mistake, I want this to work more than anything other than having a healthy child. However, the MS mantra "hope for the best but prepare for the worst" plays a huge role in my disposition. You need to be that way in order to stay sane sometimes.

So I take a step back and think about all those who have horrid diseases with no answers who've come before me. There's been snake oil, clinics in Tijuana, the Esperanza Institute in the Bahamas (MS'ers will know what I'm talking about there), and of course things like laetril, the supposed miracle cure for cancer. All I can really remember about that drug was the lampoon Saturday Night Live did on "spray on Laetril". It was a funny skit (you can probably find it on YouTube), but probably not to cancer patients who looked on it as I look on this. So I am really doing something just like that. It's different in the fact that we are actually fixing something that isn't functioning properly in the body vs. blind faith that this or that chemical will be the miracle cure. So it IS different, but not in my expectations for what I hope it does for my MS. We have no clue yet and won't for some time, but I understand Hope and I understand that people like me need it like air if we are to continue and stay positive and be able to look to tomorrow. It's not something you can relate to until you're in a position to need it, but Hope is the most powerful thing that people in bad situations need, and I'm dead serious about that. I'll use a quote from Nietzche to make that point and sign off and quit being windier than a bag of assholes for now. He says "He who has a Why to live for can bear almost any How". Man I wish I was smart enough to come up with shit like that! I'll see you all soon.

Lew

Dr.s pontificating on Zamboni's work

2009-07-11T05:27:00.000-07:00

Ok,

Here is a link to some of the comments that a couple of Dr.'s who have really looked at his work have posted on his original paper. This is good stuff. I don't understand all the terminology, but I understand a great deal of it. I'll leave it to some eggheads to molecularly figure all of this out. However, you can feel that these guys can't debunk it either, but rather both come to the conclusion that this should be rigorously investigated. The thing I will always come back to since I don't understand it all is that the lesions seem to be right in line with the occlusions. Could the lesions be caused by this? I think the Dr.'s both say "maybe". So it's more heartening than disheartening because you should see Dr.'s comments when a goofy theory is posted. It's like a puppy in a shark tank. At any rate, here is the link for some "light" reading! I take off to go to my mom's today in Columbus and will be leaving tomorrow. I'm nervous, but not about the surgery. I'm nervous whether or not this will work or not. I think we all are. But when your choices suck so bad (the current shitty ass drugs), you will try anything when facing full on disability. Wish me luck and pray if that's your thing, but pray for all of us, this disease really sucks for me, but I know of about 400,000 other Americans who are just as anxious to see this work as I am. I'm sorry to have made this blog on such a shitty program that makes it hard to post comments. I just clicked the first "blog maker" that came up on Google. I'm also sorry I'm swearing so much this morning. I'm trying to work on that, but all the wonderful comments you have all sent me through my email and all the support is overwhelming. That coupled with the anxiousness about this being so close has 8 years of built up anger, sadness and frustration right under the surface has me very emotional this am. Happy trails to me! Here's the link:

http://www.thisisms.com/ftopict-7635.html

God I hope this works.

Just the facts about CCSVI

2009-07-10T08:58:00.001-07:00

The woman who put all this together for us also broke it down in laymans's tems for people like me! Here is the text and it's pretty cool, but keep in mind that this is evolving by the hour. The Dr. out at Stanford who is doing this has cleared his entire summer to see nothing but MS patients due to the massive amount of inquiries he's getting. He's also a pretty cool guy and is more focused on the patients and making a difference in people's lives. I'm quite sure he could make a more than comfortable living staying in the cardio-thoracic field in which he has specialized in his career, but here we all are knocking down his door and he said "come on in!"

Here's the text:

1. What is CCSVI?
Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. This slowed perfusion has been linked to fatigue in MS patients.

2.How is it related to MS?
Every MS patient tested so far has it. Over 100 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Four patients in the US have it. They were tested by Dr. Michael Dake. Six clinically defined MS pateints and 3 probable MS patients have it in Poland. They were tested by Dr. Marion Simka.

None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.

3. So???? Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?

Nope. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.

a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots) or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't.

b. congestive venous myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.

4. Well...that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?

Actually, no. CCSVI has been found in all MS patients, whether or not they are on immune modulating medication. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested 65 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

5. How can I find out if I have this?

You need to be tested by a doctor who specializes in radiology, because in order to see inside the veins, you need a venography. This is where dye is injected into your veins to see the blood flow. Doppler ultrasound can tell you if you have reflux, but dopplers are very dependent on operator skill, and can give false results. The only way to be sure is to have a venography or magnetic resonance venography or your jugular and azygos veins.

6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.

That’s your neurologist’s opinion. This is just the facts, ma’am.
Ask yourself....are your neurologist’s opinions based on fact? Ask s/he what they believe causes the MS demylination process. And ask for the facts, not speculation.

So this is my primer for CCSVI. I hope the trend continues is about all I can say right now. I leave tomorrow and will post next when I actually have something to say about the actual surgery.

OK, I'm a moron

2009-07-06T09:56:00.001-07:00

I forgot to post some "vital statistics" about myself. I'm a 42 year old white dude from Ohio. 5'8" tall and 165 pounds. Married to my beautiful bride Brenda (16 years now!) and proud dad to 13 year old Sarah. Former wannabe athlete who thought of himself as a decent golfer, an excellent racquetball player and pretty much average at everything else! Exercise addict before all of this and avid camper and sports fan. I'm pretty much your Joe who just wants to still walk when I retire. A little golf wouldn't hurt either, but right now we're focusing on keeping me on my feet!

And so it begins

2009-07-06T08:28:00.000-07:00

Where to start? I've read many blogs, posted comments on many blogs, but have never considered starting one until now. I don't even know where to begin, so how about the beginning. I will figure out how to post photos and stuff on here in time, but I've always been a computer "user" extraordinaire, but never have I created anything other than stuff in existing programs, so give me some time. I figured out AutoCAD on my own, so I'll get this eventually. I'm also posting all of this from a computer that, how to put it, has issues. I have a teenager, so I'll just leave it at that (can you say Limewire, Myspace and other virus laden sites?).

So I'll give a bit of back story. I got my diagnosis of MS in August of 2001. I'd been showing symptoms since that March, so we'll say I've had this crap for 8 years. MS is a funny disease (aren't they all to the patient?) in that there are lots of us who have it, but it varies in terms of what symptoms you get and the actual severity of how it affects your daily life greatly; probably more than any other disease, and therein lies all the fun. There has never been one single characteristic, other than shared symptoms, between the different variants of MS until now (it's early, that may change, but so far so good). I'll get to my cursory understanding of that after a bit. This is all about the procedure I'm getting ready to have, but it's mostly about how I have to try and try to understand how I'm going to keep going forward if it doesn't work, because I'm at the point of this disease where things like home modification and wheelchairs and stuff like that are right on the horizon.

I won't bore you with all the details of my particular MS case. It sucks for all of us who have it once it really shows up for real. MS can be pretty mild for many years in the beginning, and even for life for some people lucky enough to have it that way, and it can lull you to sleep. I ran every day pretty aggressively for about the first five years. I have problems just walking now. And that's all happened in the last 2 or so years. So why the blog?

The procedure I'm getting ready to do could potentially stop the disease process. It hasnt' been proven out over a long period of time, which anyone who has MS will tell you will be the true test. This disease has so many quirks, not the least of which is long periods of disease inactivity, so saying anything "works" is something I won't do until years and years of no disease activity. Hopefully this procedure will stop it and allow my body to get to the business of fixing itself.

What is this thing I'm getting ready to do? Endovascular surgery is the actually procedure, but it's aim is to correct something called Chronic Cerebro Spinal Venous Insufficiency, or CCSVI for short. For years doctors have labored using the autoimmune model to categorize and go after MS. There are a lot of problems with this model. There is no antigenic target, and as stated before, there are many problems with it because there are just so many exceptions and that nagging problem of the three types of MS not having a common clinical thread. So it comes as no surprise that the drugs that are out there for MS have very marginal percentages of effectiveness. Some might even say they don't work at all since a great deal of us (a majority) still keep right on getting worse while putting all of this crap in our systems. To me, the people who show effectiveness could quite possibly simply be in a "quiet time" of the disease. I say this because I've been on two of the FDA approved therapies and I've just kept right on getting worse.

So what is this CCSVI thing? Well a doctor in Italy named Dr. Zamboni (insert ice machine joke here) stumbled upon the first common thread ever found. He discovered that every single MS patient has clogged jugular veins and/or a clogged azygous vein. The azygous is like your jugular vein, except it is the main one for draining deoxygenated blood from the spine. I can't get too technical here, so I'll just say that he tested over 100 MS patients against healthy controls and ALL the MS patients had it and none of the controls did. Very exciting thing to find to say the least. So the next step is to perform endovascular surgery and correct the problem. It's not like this is a roll of the dice. It may be in terms of what it may or may not do for MS, but it's a clinical problem that would be indicated to be fixed if it were found in anyone.

So I go out to Stanford University on July 13th to get this looked at and fixed. Each and every one of us who is having this done is certain that they will be the first person to NOT show this characteristic; but the first 8 who've had it done at Stanford have all had it. So far, so good. I'm sure I'LL be the one now, but so were they and they all had it, so fingers crossed. I think this is the dynamic that one creates when they are constantly let down by everything they've tried to this point. You get your hopes up only to have them dashed, so the coping mechanism is to be as pessismistic as possible so you don't have such a far drop if things don't work out.

There is so much detail that I've not included in here that I feel like I'm "leaving out". However, I have created this to track the impact it has on my life, not my MRI. Also I realize that with the exception of the people who frequent thisisms.com, this will be the first time lots of people read about this and we tend to speak with a base of knowledge gained from hanging on every letter typed on this subject for the last 1/2 year or so. Consequently if you have MS and you don't belong to thisisms.com, you're missing out on the best place for ALL things MS on the web. The people there are amazing and one of the people on there is actually pretty much responsible for the rest of us knowing about all of this and having the opportunity to get it done now before it grinds to a snail's pace in an FDA approval process. It takes a special person to just keep driving away until you find someone willing to listen about something they didn't learn in medical school and my thanks go out to her from the bottom of my heart. Most people would be content to just get real educated about the concept and mention it to their doctor or wait around until you can get this done anywhere and fall short of actually arranging a doctor to actually have the balls to do it. I love you Joan.

As MS gets real, it also gets real scary. When you're world just keeps getting smaller and you start not being able to even come close to accomplishing what you want to do in a day, it is the most frightening thing in the world. However, there are people who handle situations like this with grace, and there are others who puss out. I have to be an example for my friends, anyone who cares to listen, and most importantly my wife and daughter. Hearing them talk about taking vacations and stuff without me pleases me to no end because they need to live their lives, but it also rips my heart from my chest. I was a definite 'life liver', but so were/are so very many people who have something like MS or cancer or something else. It's not how bad it affects you, it's how you respond to it that will be your legacy. I don't want anyone to ever think I just gave up. If this is it you'll find no one more grateful, but if it isn't, I need to be able to move on with life even though my ability to move is becoming severely compromised.

So thanks for reading and stay tuned. Hopefully you will see me post of waking up from a nightmare almost a decade in the making. If not, hopefully you can read about how one person deals with handling a disease that tries to rob you of your soul. It may take my body, and it may not, but it can't ever have that.