Friday, October 29, 2010

This kind of sums it all up

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!

Wednesday, October 27, 2010

last post about CCSVI

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!!

Monday, October 4, 2010

Retired

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!!