Sunday, May 16, 2010

Dear Diary: Now what ?

When I started looking online for other dystonia stories, I found the same theme amongst people who had Deep Brain Stimulation. As soon as they are able to they go and run a marathon...

What is it about dystonia that makes you want to do something incredibly athletic just as soon as your 'better'?

Perhaps (especially in generalized forms of it) there is such indescribable joy for once again having control of your muscles that you immediately want to test your personal limits.

There's also the possibility that dystonia spasms and contortions have left the un-dystonic muscles weak from not being used, and the best way to fix that problem is through a good old fashioned work out.

All of these things I didnt used to think about, but now I am facing what I imagine post DBS patients go through. The overwhelming urge to work out.

Even though I had some success with botox injections, I never went more than 3 weeks without spasms. The other six weeks were just weeks that took the edge off. With my current treatment it has now been three months without spasms or limp.

As a result some of the muscles in my legs, muscles that I suspect were barely used before, are suddenly growing in size.

Driving is no longer painful

Heels do not bother me one bit.

Walking endless hours no longer bring on leg fatigue.

I feel like I could run a marathon.

Im not however =).

I am going to join a gym and workout


  1. I'm so happy for you!!! I'm not running a marathon either but my husband did it for me! You're right about the freedom to move and how wonderful and miraculous (a word that my family/friends are using) it is to just get up and go. Great news, good for you! I just bought myself the Winsor Pilates workout so we'll see :)

  2. gym really, really helps
    but be careful, as time goes, you'll get stronger, the willing to do "incredibly athletic" things will only increase, it has driven me to constantly overtrain and hurt myself, which makes me mess up my program with more and more rest days, cos of joint/back/neck pain, blocks my bloodflow like when i didn't work out at all :/


your comments are appreciated.