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Rhonda wrote:


Hi.  This is my first communication as a new member of this list or any
internet exchange.  I am 47 years old and was diagnosed with Parkinson's
about one year ago, after two years of uncertain diagnoses of multiple
sclerosis and primary lateral sclerosis.

 Unfortunately, I have developed "variable response" syndrome with respect
to the Sinemet.  My current physician, a neurologist whose subspecialty is
Parkinson's) tells me that it would have been preferable not to have begun
my treatment with Sinemet because of the possibility of developing this very
syndrome--hence the experiment with Mirapex
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Welcome to the list, Rhonda.  Your story is a very familiar one.  My husband
was diagnosed with PD at age 40 and was immediately placed on Sinemet by a
neurologist who didn't like to hear complaints from his patients.  Jamie's
response to the drug was almost immediate - he spent more time frozen than
functional, and when he was functional he was dyskinetic.  We finally found
a doctor who added a number of agonists - including Symmetral and (when it
hit the market) Eldepryl.  Jamie stopped taking as much Sinemet - reserving
the drug for evenings when he was home and could withstand the side-effects.
Jamie suddenly found that he could function quite adequately without the
burden of 'down time' and dyskinesis.

Two years ago my husband began seeing a different neurologist.  His present
doctor believes that Sinemet is the best medicine for PD, so he encouraged
my husband to 'up' the dose of that med after he started him on Mirapex.
Although the therapy worked for a time, Jamie developed violent and
dangerous dyskinesis.  He had a terrible fall last year after developing
severe dyskinesis.

I insisted that our neuro decrease the Mirapex, siting my concern for my
husband's safety.  He finally agreed - but after three months we noticed
that Jamie lost so much function that we've now increased the Mirapex.
However, we are decreasing Sinemet to the point where he's now taking very
little (400 mgm/day) - and we may decrease the dose even further.  His
dyskinesis is subsiding to some degree but he is moving better on a more
consistent basis.

My husband and I have come to realize that medications for PD are tools that
must be individualized for his particular case (which, according to our
neuro, is atypical).  Considering that he has been able to function as a
Chemist for 20 years, I don't think we've been off the mark.

Just recently, I found myself viewing Sinemet as 'the enemy'.  It is the
single PD drug that has caused Jamie the most discomfort.  Although I
realize that a level of Sinemet must be reached and maintained for Jamie to
function - I also believe that toxic levels can accumulate rapidly, thus
causing discomfort.

PD is *not* one disease.  Ask each member of this list their symptoms and
response to meds and you'll get in excess of 1400 different answers.
Although the advice obtained here is important and timely, remember that the
medication regimen that works for one person might not work for all.  Again,
welcome, and may you find comfort and peace participating with folks and
their loved ones who share your diagnosis.
------
God bless
Mary Ann Ryan (CG Jamie 60/40)