Oct. 1

Observing and experimenting for dystonia.

As you may have seen in other threads I recently had my sinemet reduced by 20%, throwing in another variable that could reduce dystonia. Dyskinesia is markedly decreased. I haven't been able to monitor banding and dyskinesia because i haven't had much.

I had one short episode of dystonia in the middle of the night last night. But the key word is short. It's safe to say that my dystonia has decreased by about 90% in the last 7 days.

The self adhesive ace bandages do not work as well for me or keep their shape. I wrap firmly and check skin color occasionally to make sure they all match and nothing too tight. I have not timed anything yet...i just wear it around the house and if it isn't on, and I feel like I'm going off, I put them on to prevent dystonia.


Here's what I wrap: using 4" wide ace bandages with safety pin attachment

• both upper arms
• bad wrist- can keep hand open and straight
• bad ankle and both ankles sometimes - this CONTROLS toe curling
• chest
• sometimes head
• I sleep with most wraps on except good ankle and head

last night i had an upper torso wrap that went around my neck and down around my upper legs. This is not recommended if its hard for you to make it to the bathroom lol. I'm hoping that just a firm chest wrap with upper arms will do it.

I have had neck surgery and neck pain is a continuous problem depending on how much i use it. But oddly, it hurts more with dyskinesia than with dystonia. However i have very bad shoulder and upper back and arm dystonia and wrapping chest and upper arms seems to help and even prevent this.

I'll work on different time periods and see what happens with no wrapping and just the reduced sinemet. I'm pretty convinced that wrapping is helping, even it it is just keeping the muscles supported, so they do not have to work hard when off, which prevents them from cramping into dystonia?

I am just thinking out loud..how are the rest of you doing? Thought it was time for a thread for individual reporting and comments.

Paula