For instance, I have ataxia (Amy's blog talks about cerebellar ataxia, but from what I understand, my stroke didn't touch my cerebellum). My physiatrist has noted my ataxia seems more noticeable now than a few years ago, but we haven't talked about why that might happen.
This is my theory about it: the ataxia is a good sign of pushing to the limits of my range of movement. Very slowly, I'm gaining more range of movement. But each millimeter (or so) of increased range takes a huge amount of effort and exercise. It takes a while for my muscles and joints get used to the new way of moving. The ataxia gets better with exercise--until I gain a tiny bit more of range of movement, and the cycle will start again.
That's my theory.
I made a video to show how tiny changes of position can set off my ataxia. The video is probably confusing, because I blabber on about "good" and "bad" positions. When I say a position is "bad," I mean that I'm compensating a lot for weak muscles (even though most viewers can't see much a difference); a "good" position challenges my stability--leading to more strength in the long run. I think.
Grace I totally agree with your theory. As your hand makes progress you are demanding more from your shoulder. I see you holding your shoulder still in the second attempt once you get those shoulder muscles to kick in and settle down.
ReplyDeleteI don't have ataxia, but my spasticity behaves similarly. The greater the strength and range of motion I achieve, the stronger it becomes. I have a theory, too. My stroke was an evil entity that entered me and delights in thwarting anything I try to do. Not very scientific I admit, but it explains things better than anything else.
ReplyDeleteThe devil personified?!
DeletePerhaps not the devil himself, maybe just a minor demon. Must be my southern Baptist upbringing coming out in me.
DeleteGrace, this is exactly what I'm working on now -- recoordination of my muscles starting from a proper base of alignment. When I first try using particular muscles in the "new" proper way, my extremities sometimes feel "floppy." They adapt quickly, but it's hard work to remember and effect all the adjustments simultaneously. I just keep working at it!
ReplyDeleteRebecca & Marcelle - thank you for the comments. It helps me a lot.
ReplyDeleteMy ataxia kicks in my lower leg. While standing I have better control of where and how it behaves than if I'm lying down. Trying the place the foot where I want it to go...it ever gets there.
ReplyDeleteKeep fighting. Grace we know people who recover remarkably through persistent efforts. Keep it up.
ReplyDelete