Monday, February 17, 2014

My Ataxia

There's a stunning lack of data about recovery for someone who's in my situation--healthy (pre-stroke); in their forties; and more than a year out from the stroke.  Often I just make up my own theories about the process of recovery.

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.


  1. 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.

  2. I 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.

    1. Perhaps not the devil himself, maybe just a minor demon. Must be my southern Baptist upbringing coming out in me.

  3. Grace, 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!

  4. Rebecca & Marcelle - thank you for the comments. It helps me a lot.

  5. My 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 ever gets there.

  6. Keep fighting. Grace we know people who recover remarkably through persistent efforts. Keep it up.