Sergio Guzik: There has not been much regular PD action here lately and I
suspect we are all in a sort of collective depression because nothing new and
exciting has happened lately. Even pallidotomy has lost some glow what with
the high cost and long waiting lists and messages creeping in that results
are not as good as expected after the initial magic first year.
I suspect your very painful muscle contractions (like a charlie horse) is
dystonia caused by the disease and helped by Sinemet. This can be a problem
as time goes on and Sinemet loses its power. Probably you should start some
alternative treatments like massage and soaking in a hot tub. Acetaminophen,
ibubrophin, and codeine might help.
I had painful dystonia of the shoulders, chest, groin and back which
stopped when I had a pallidotomy last year. So far none has come back. I
wish I could say the same about Ekbom Syndrome (Restless Legs Syndrome) which
is not dystonia (cramps) but rather shock-like spasms that happen when you go
to bed or try to relax and watch TV or read. Dreadful.
Good luck with your pallidotomy.
Barbara Yacos
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