Re: Atypical PD?/Dystonia and PD/Ray

[Charlotte A Mancuso <mancann@xxxxxxxxxxxxx>]

Thanks, Ray.  I wish you the best in finding solutions for your dystonia. I'm 
so sorry that the DBS made it worse, and also caused speech problems.  I hope 
you are able to regain those loses.

Have you ever tried Baclofen for the Dystonia?

Charlotte

Rayilyn Brown <RayilynLee@xxxxxxx> wrote:
Charlotte

I get a dystonia newsletter and learned that some people, young ones, have
JUST dystonia and sometimes it is responsive to Sinemet, hence DRD. The DBS
surgery is done with electrodes to globus pallitus sp??? for folks with just
dystonia. My electrodes went just to subthalmus nucleus because I have PD It
has helped tremor and upper body strength, but dystonia is worse, which neuro
told me could happen, so is talking. I'm waiting for approval from Medicare
for botox for my dystonia wracked toes. I feel like I may have 2 diseases
Botox did not help my left leg which has been drawn up for 7 years - I walk on 
my
toes and have hard time putting my heel down. Will see programmer tomorrow -
my CG thinks she upped left side (which was OK) last time and I still have
tremor in my right foot, so left brain voltage neeeds to be increased. I took
some Sinemet today and it MAY help a little I don't know. The more I learn the
more complicated it becomes. ALl I know is sI"m not tap dancing like others
with DBS surgeries, but it has helped tremor - which has stopped completely on
left side.

Ray

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