After i posted i realized i hadn't said why i couldnt stand. No Gretchen i dont mean standing as far as trouble standing up. Its when you bend over to clean your private area with treated wipes i have to try to prevent Uti's and I have to Cath myself when im in flares for residual urine, ...to stand(having to sort of squat a bit to do both) and try and do these two things are no longer as good as last year. My legs are weak and begin to shake and want to give out. It's a residual for sure and a progression since last year. I had no problems at all with legs, now im finding myself having to sit from sheer jelly legs and shaking legs.
Also Ms uppity your so right about the standing. What the heck is it about merely standing that feels more painful or achey than if you ran? lol. Wow it is very hard to stand for long in one place, or in a line as you've put. I also now have that. This time last year i did not. So yes that has also shown iteslf in the bathroom business at the sink and things. (im glad you knew what i was saying on this one).
I mentioned a few residual's and i suppose these are markers of progression. The same as last year i could target shoot with that same gun without lowering my arms but maybe once. Still a little shaky but not near visible to others as now. I now have arm weakness that prevents me from shooting more than 2 shots without dropping arms. My fingers even become so jellyish that its hard to pull the trigger, although its not a very hard thing for others. This time last year? I had no prob with that.
So, I am saying there is progression. I know that. I can see that shooting guns from last year to this year was very much reiance on compensation, my arms jerked so bad, i'd see the red then it would leave then it would come back to aim and leave. So i decided to "compensate" and fire while it left, hoping it then would fire when jerking back over to the red in my site. It worked!
Nevertheless i see the difference. Alot.
I simply cant stand for long in one place. Last year? I could. (i do need to note these for my neuro) as they are very obvious changes and they arent things that are ever getting better.
It's just how much i have changed in one year. So there were attacks. Not all were, but some definitely were and alot of them I remained home and held on for dear life through them. Just to keep from bothering my husband or to chance an encounter with another odd doctor.
Things have changed alot for me so i feel now I will be able to go in the next time its bad with NEW symptoms and obvious exac. And will have progressions noted.
Other things i can look back on that i could do last year that i can no longer do are. Carry the jugs of milk into the house. If i do , i will pay for that with my spine problem. I find my husband gets the groceries alot more often than Id like it to be. Before this he never did.
So i think when i say i know my residuals i leave out things like leg weakness that has not/will probably not improve.
Inability to hold something up for very long, has changed alot since last year, even if it were hard and shaky last year its sometimes a no go now.
Hyeine had declined (lowering head...lol im ok, i feel grateful for that thread)
Driving, besides the sleepy thing, i find that the feet have become somethng I now compensate for alot.
I always open my screen door now on the handle with my hands, while my left foot pushes it open ( a compensation i found id been doing without knowing it)
the forever collapsable thumb is here to stay.
no sense trying to bite my nails like last year, that results in a type of intention cramp (making new terms as i go lol)
the spasticity has multipliled vs last year greatly and yes that was an attack , it had many new symptoms and the severity of the others were to the degree that i couldnnt project my voice loud enough for anyone to hear.
The voice-lower/hoarse and not leaving. During flare its almost inaudible but i try to get it out.
Cognition-there is no clarity or recent recall during the flares at all. I feel scared because i dont even seem to know what month it is , but afterward sharpness returns (you notice my errors...spelling etc).
Sorry , im sure im skipping some. It really brought it to my attn when shooting the guns. I remembered last year and the difference was marked.
Same with last year and the standing...now its sit down to cath or wipe..bending over to do these things make my legs want to give out.
* Just looking at what ive typed i do realize I need to make 1 list other than my symptoms as i go , and that is one that just lists the things i could do last year that i cannot do the same or at all this year. That might help them chart progression?
thanks all, I dont think ill fall Gretchen , thank you for your concern. I do need the walker for spasticity for future though.
I hope your both doing well
P.S. I dont know if you guys remember what they had told me? At the clinic? They told me and my husband that my future looked good and they didnt feel id ever be in a wheelchair. very bold statement given the nature of this disease and my legs growing less stable.
Every day brings us closer to what we reach for .........in all things.
Post Edited (Kiera) : 2/29/2008 8:13:23 PM (GMT-7)