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Hello.  I've been lurking this list for awhile, reading your very
interesting and helpful comments.  I  have also been  on and off the list
several times in the last 5 years.  After awhile I get tired of so much
mail.  However, when I need new ideas this list wins hands down.

Tomorrow I am switching to Requip, from Permax (6 - 10 a day)  which I have
taken along with Sinemet 25/100, two to two and a half a day, Amantadine and
Eldepryl two times a day, and recently Remedan one and one half a day.  This
regime minus remedan has held me for about 12 years.  I have always broken
up the Sinemet into 5 tiny doses per pill and sometimes the Permax in half.
Then I titrate it throughout the day in small doses to try to even out the
effect and it has been pretty good.
I am 57 years old and have Parkinsons since age 35, diagnosed at age 41.  It
has progressed very slowly, and I have had a pretty good life.  I think my
exact diagnosis is: Young onset hereditary primary Dystonial.  I don't have
tremor.  I have lots of inner tension and torquing from dystonia and now I
can't walk without crutches, because another problem has intervened,
resulting in damage to my proproception, that I have been unable to recover
from, despite 2 times a week physical therapy, and many other efforts.

The other problem is probably degnerative arthritis which appeared in my
right hip in the early 90's, causing great pain and eventually an inability
to walk, resulting in total hip replacement surgeries - five of them in four
years, and finally a resection arthroplasty this past July 2, 1999.  Now I
have no hip joint, a shortened leg that surprisingly can bear some weight,
if I could get the head thing fixed.  I believe in our potential to fix some
of the Pd symptoms over time because I have been able to recover lost fine
motor functions, a sense of rhythm  so I could dance, and clear speech after
a period of difficulty with word retrieval and expression.  However, these
last few years with the dystonia beating my titanium joints into tin cans
have been pretty traumatic, and the atrophied hip flexors and abductors on
my leg haven't helped either.

If there's any hope at all, I really want to walk,. at least with a cane
instead of crutches.  I am swotching drugs because of this, and because the
peak dose dyskenesia (in the form of dystonia) has increased to constant
dyskenesia except for good days.  My window of normal functioning has almost
closed.  It may still be a mild case, but its wearing me out, and making it
impossible to make further gains with my balancxe and control for walking.

I'm afraid this is the long version of my story.  I would really appreciate
any input you might have, particularly on the subject of Requip - warnings,
cautions, etc.  However, I'd also like to know if anyone has had experiences
similar to mine and what you think.  Finally I'd love advice on how to work
with problems with proprioception.

Thank you so much.                                   Claudia Elliott