Rough Start with bioness (venting)
Entry posted by CagedBird
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Today I went to get fitted and and get my bioness registered. I was so excited figuring out how to charge it up lastnight and I woke up at 6:00 this morning from the beep that it was fully charged. The green light was so beautiful to me. It was like now is the beginning "the first day of the rest of my life". I never fell back asleep but instead stretched all morning and wore the splint to keep my fingers straight since I couldn't keep it on lastnight. Unfortunately I had to keep removing it and by the time I got to therapy my fingers and wrist were red from the pain. My experience today was a bit disappointing. Last year when I tested out the bioness, my fingers sprang out after a little stretching. It felt so good but so painful for them to stretch out. Even over the summer when I tried an older e-stim machine my fingers responded pretty good. Although they didn't straighten all the way, they tried pretty hard.
Today, however, I wanted to cry. My fingers barely budged. The bioness rep had it on a low setting and it was just on pulse so perhaps he did not have it adjusted to really open my hand but the rep was kind of discouraging today. He told me things like the purpose of the bioness and he emphasized I probably wouldn't get motor skills back. He suggested I get into therapy or get botox but definitely get back on baclofen or some kind of muscle relaxant. He said I had so much tone he doesn't know if I would really benefit from bioness and I must not have had that much tone when I first tried it last year.
I knew the bioness wasnt going to magically stretch my hand and I knew it would take a lot of exercise but I guess I didn't realize I have such a long way to go. I guess hearing him say the bioness might not be right for me is what really hurt me since the bioness has been my only hope. If it isnt right for me, I don't know what is.
Its just kind of frustrating. I have to possibly get painful botox again. Im already signed up for the supra scalpular injection in my shoulder, in order to get the best result during my trial I need to get back in therapy, AND it looks like Im going to have to get back used to being tired all day since the only medicine I have is the zanaflex.
I met a lady outside while I was waiting to get picked up. She had a stroke in 2002. She gave me her number but I couldn't help but envy her perfectly straight left hand. I asked her how she got her hand back and she said she knew about strokes so she made sure she wore the splint all the time when she was in the hospital. Both she and the rep said I have some contractures in my wrist. Im supposed to use the bioness for 20 more minutes today but right now I just feel mentally exhausted.
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