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I'm a 54 year old female diagnosed with PD almost 10 years ago.  As a new
subscriber I've been avidly reading e-mail info about this condition (I
prefer to think of it as a "movement disorder" instead of a disease), and can
offer some hope concerning some of the topics addressed.
 
I've been fortunate to be able to continue working as a high school English
teacher with the help of my neurologist,  Dr. Joel Perlmutter of Washington
University in St. Louis.  Dr. P. is an eminent researcher and developer of
the PET scan.
 
Although I still have on/off problems, some of my symptoms have improved as
the result of an experimental drug, pramipexole, which is undergoing trials
at WashU.  I'm amused at so many constipation problems, though I shouldn't be
- that's what did Sidney Dorros in.  My constipation problems have all but
disappeared, though my system still isn't completely "normal," whatever that
is.  My handwriting is much better, even when I'm off, and I've been able to
cut back on my levidopa/carbidopa.  I take 5 1/2 - 6 a day of the l0/100's.
 
I was originally invited to join the study because of balance problems - I
kept falling and breaking bones, thus keeping my orthopedist in business.
 Since pp I'm much steadier on my feet and haven't broken anything (knock on
wood.)
 
The physical effects have all been positive, but mentally I know I'm not as
sharp as I once was.  I'm more disorganized, forgetful, and easily lose track
of things.  Like Camilla's husband Peter, my hearing has degenerated, though
Dr. P. says it's unrelated to PD.  I'm also a member of the insomniac
society, and haven't found a really effective way to deal with that.  I take
5 baclafen between 1 and 2 AM to ward off dystonia when I wake up, but even
though it's supposed to make me sleepy it doesn't do much.  On the positive
side, I do my most creative thinking lying awake in the early morning hours,
and I'm not as tired during the day as I would expect to be.  The only time I
get  drowsy is when I get in a moving automobile.  This is a real problem
when I'm the driver!  Another plus/minus effect of the drug is that it has
increased my appetite and made food taste much better that it has in years (a
plus); as a result I've gained 10 pounds (minus).
 
I'd be interested in hearing from people involved in other pramipexole trials
around the world.  The drug looks promising and for those with symptoms
similar to mine, it may be marketed in the not-too-distant future.
 
I've been active politically for PD causes through the Parkinson's Action
Network, Joan Samuelson's group in California, and most recently have been
bugging people about the Udall bill.  I, too, have heard nothing about it's
most recent status, if it has any, and would appreciate information.
 
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