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George,

My advice regarding your wife's neuro taking her off Sinemet is to find
another neuro. Yes there is controversy about when you should start
Sinemet treatment, but a good neuro will discuss the pros and cons and
the decision should be made as a partnership. I've been through 5
neuro's in the 5 years that I have had PD. Two moved away and one
dropped my medical plan. However, one I got rid of because I was treated
like the village idiot. Unfortunately there are some neuros who want to
cram treatments down your throat because it is the trendy approach to
treatment. Wow, some pent up anger. Does someone need a hug?

Anyway, at age 46 my neuro reviewed the pros and cons and I made the
decision to start Sinemet and it has been the primary treatment for the
last five years. Part of his argument was that I was in my peak earning
years and I needed to stay as productive as I could. I also take low
doses of agonists, but they produce side effects and don't effectively
control the symptoms. Unfortunately, this neuro moved away.

The key is to find a neuro that will work with your wife and find the
best treatment to relieve "her" symptoms. PD affects people very
differently and individual response to medication will vary widely. A
one size fits all treatment plan is a formula for disaster.

The argument for agonists as the initial treatment was that Sinemet was
effective for a limited number of years before dyskinesias would appear,
therefore, you should bank those years by using agonists for initial
treatment. However, this is highly controversial. The latest trend is
that Sinemet in combination with a COMT inhibitor, such as, Comtan will
smooth the Sinemet release. This smooth response will prevent the
dyskinesia since it is the on/off medication cycle that causes the
dyskinesia. Therefore, some neuros will start you on Sinemet right away.

So who should you believe? The answer is nobody, since there is not
conclusive evidence for any of this. You need to get the facts,
understand the pros and cons and make an educated decision. My view is
that with the variability of PD, the term controlled experiment is an
oxymoron. So be willing to experiment to find the best treatment for
your wife's symptoms. Someone else's experience may not apply.

good luck,

Phil Gesotti

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