I have been told to not expect any improvement from HSCT, and the prognosis is to simply stabilize disease degeneration. I have been reminded to be careful of expecting any sustained improvements as they may disappear in the future, and may/may not come back.
Well so far, my improvements have been so unreal that I am pinching myself to make sure it’s real. I’m celebrating whatever I can, when I have it!
I have had a number of people ask me, ‘you can walk like that, so why are in a wheelchair?’ ‘Aren’t you better now? You look ‘normal’.
The answer is, I look normal in a wheelchair, and no I’m not all better, and yes I still need an electric mobility device as my body does what it can, then that’s it.
My disabilities are primarily from the neck down and ENDURANCE in origin. That meaning, I can move body parts for a matter of seconds or perhaps minutes, then I hit a wall. That wall is a neurological disintegration and an explosion of these hideous sensations in my body. I can’t push it. My hopes are to increase the duration of my: standing, walking and any functionality with my hands.
I’m excited to share my walking video of 50 steps outside, with no walker, and is the first time I’ve tried walking outside since I last posted one two weeks ago.
PS: I meant to say this wig IS uncomfortable 🙂