Spasmodic Torticollis & Other Neurological Problem

srsly_sarah
srsly_sarah Posts: 42 Member
edited November 2024 in Fitness and Exercise
Good evening!
I was wondering if anyone else on these boards deals with Spasmodic Torticollis/Cervical Dystonia or other issues the require routine treatments--treatments that interfere with being active.

I get shots on one side of my neck every 10-12 weeks and the week before and definitely the week after the shots, I am unable to maintain the same levels of exercise, which affects my weight loss and any type of training program that I had been participating in. All of that leaves me a little sad, which only makes things worse, of course.

I try to do gentle exercise, which might be the most I can ever expect to do, but if there is anyone else out there dealing with the same issues, I would love to talk to you!

Sarah

Replies

  • kpk54
    kpk54 Posts: 4,474 Member
    Count me in regarding cervical dystonia. Mine "surfaced" in 2000. After 3 series of BotoxA in my left SCM and another muscle on the back right side of my neck in 2000 & 2001, the CD/ST minimized to near non existance. Unfortunately it resurfaced in 2013. I am currently debating whether or not to do BotoxA again.

    Working out is tricky. I'd love to be walking outdoors but it is not really safe when you can't see the sidewalk in front of you. I'm a "right Turner". Pretty severely sometimes so walk like a crab! I've lost 47 of the 63 pounds I want to lose mostly through use of a stationary recumbent bike. I do some youtube low impact aerobics and zumba by turning sideways to the screen. My neurologists advised me NOT to fight "the turn" but rather adapt. I love yoga and stretching but stretch the muscles of the neck and shoulders In the A.M. right after I wake up and before the CD / ST involuntary muscle contractions begin and "lock" me intimate my right turn.

    We can exercise. We just have to be careful to not do anything that adds more stress to the neck. I do crunchless ab work. I 'll send you a friend request but wanted to respond also on the board. Kind of a Public Service Announcement for Cervical Dystonia/Spasmodic Torticollis.

    Sorry you have it too. Kathy
  • srsly_sarah
    srsly_sarah Posts: 42 Member
    Bump! Kathy and I have been keeping in touch for awhile now. If anyone else with Cervical Dystonia is out there, hit us up! Kathy really is inspirational :)
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