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!