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Joyce:  I just found out about the Parkinson List on America Online and threw
out that question about the "on-off" phenomenon because that is the problem
my mother is trying to deal with.  She is 82 years old, was diagnosed with PD
a little over four years ago.  She is also in a great deal of arthritic pain
and is currently undergoing 2-3 hours a week of physical therapy to maintain
mobility.  Up until 6 months she was responding very well to PD medication -
only a total of  one and one half tablets of Sinemet CR 50/200 per day (taken
at 7 am,  l pm and around 6 pm)  In the first year she also had about eight
months of treatment with Eldyprl - to slow down the disease we were told -
but because her stomach is very sensitive to medications, she discontinued
the Eldyprl when the doctor thought it had done its job.  She is seeing a
neurologist who has worked pretty much with PD patients.   About 6 months ago
she began experiencing the "on-off" periods and upped the Sinemet to a total
of 2 a day, taking l whole pill in the morning and half and half with her
other meals.  That seemed to help for a while - so she continued going back
and forth with the dosage.  However, 2 a day after a while did result in
dyskenesia which she finds very annoying (the head movements especially).
  The PD continues to progress - more muscle rigidity, some drooling, a
little difficulty in swallowing, soft voice, etc.  About l month ago, she was
having the "on-off" periods almost every day - some lasting for quite a few
hours - so her doctor added l/2 tablet of regular Sinemet (25/100) - which
she takes with her first dosage of Sinemet CR.  It has helped - but the
increase in Sinemet is producing the dyskenesia.  I should add that she takes
l0 mg of Prozac before retiring - to help her sleep - in this low dosage, we
are told the perception of pain is altered and she is a little more
comfortable.  Also, I'm sure the doctor is also addressing the mild
depression that seems to exist.  The worst part of the "on-off" which I'm
sure you are familiar with is the feeling of total exhaustion and shortness
of breath.  She also complains of a lot of anxiety especially at this time.
  The doctor does not seem to have many answers for us when we ask about
diet, best time to take the Sinemet, the scariness of the "on-off" periods,
etc.  He tells us and I'm sure he is correct that PD is treated differently
in each patient depending on their response.     But I would like to have
more information.  I do subscribe to the American Parkinson Association's
newsletter and the National Parksinon Foundation's Report.  But I sincerely
feel we can get more helpful information from people like yourself who are
living with PD every day.  I would appreciate any insight from your
experience and trust that this lengthy letter does not take up too much of
your time.  Thank you! Cathy