Purposes:Parkinson's Disease and Dystonia(Started Jun 01, 2009)
Date
Dosage
Parkinson's Disease
Perceived effectiveness
Dystonia
Perceived effectiveness
Side Effects
Adherence
Burden
Sep 25, 2012
30 min
Monthly
Moderate
Moderate
Mild
Always
A little
Dec 01, 2011
30 min
Monthly
Moderate
Moderate
Usually
Somewhat
Date
Sep 25, 2012
Advice & Tips
I follow a specific program to reduce my dystonia. See http://home.earthlink.net/~strkl/dystonia.html for it.
Cost
< $25 monthly
Date
Dec 01, 2011
Advice & Tips
My dystonia is worse in my left foot. It becomes pigeon-toed (pointing inward), and tends to twist so that I land on the outside of my foot when walking. In fact, I need to be careful that my ankle doesn't roll over (twisting my ankle).
If I concentrate on landing more to the inside of my foot, and trying to keep my foot straight, I can continue to walk for a while. I've worked up to the point where I can walk for a mile or more this way. And I've found that I seem to have built up resistance to dystonia. I can exercise at higher intensity, or for a longer time, before getting dystonia.
It used to be that once I went into dystonia, I would have to stop walking or running and finish my workout on an exercise bike or elliptical machine. And I would not be able to walk normally until I took my next dose and waited 30 to 60 minutes for it to take effect. (And it would be preferable to take my next dose immediately, or it would take two hours for me to come on then.) But now, even after pushing through the dystonia, once I shower and change, my dystonia is gone, and I can take my medication on my usual schedule.
I do this as part of my regular exercise routine, not as Home Physical Therapy. I've just entered it this way because it seems to be the only way I can do so.
I wrote about this in more detail at
http://www.patientslikeme.com/forum/pd/topics/100055?post_id=1535080#post-1535080
It was very painful to do the physical therapy. I did the therapy every day and it just caused more and more pain. It was mostly stretching and strength excersizes and they caused my muscles to burn terribly.