Friday, June 25, 2010

I am so busy it's not even funny

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!

Wednesday, June 9, 2010

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

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.

Wednesday, June 2, 2010

Some clarification and a forum post I just made

Based on feedback from my last post, I wanted to expound more, and I replied to a posting on the forum 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.