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Brian Collins ended his last posting on this subject with a wish
that someone, somewhere, would provide the jury with enough
facts for a decission to be made as to how early sinemet/madopar
can be taken. He began that posting with the statement that

"Dyskinesias are the result of taking too much Sinemet/Madopar".

I have no argument with Brian on either count. Where I do find
myself at odds with Brian is when he takes the view that the
period of exposure to levodopa has no bearing on the matter. I am
well aware that Brian shares this view with a great many neurologists.
The opposing view is also shared by a great many neurologists.

It seems to me that there is anecdotal evidence for both points
of view.  Brian himself is an example of a successfull user of levodopa
for 17 years. I, on the other hand, developed dyskinetic movements after
4-5 years of using sinemet. I would add that like Brian I too have a strong
need to know what is happening to me. Lacking his programming skills
I resorted to looking for, and finding, patterns in the colour coded charts
I meticulously kept for weeks on end. Despite my best efforts, over time
my dyskinesia got worse and my on/off syndrome became more
pronounced. Working within guidelines set out by my neurologist (with
whom, thankfully, I have a good relationship) I attempted to fine tune
my medications. To no avail.  My theraputic window became narrower
and narrower and eventually, 6 months ago, I chose to have a pallidotomy
to regain something of my life.

Just prior to the surgery I was taking the grand total of 600 mg of
sinemet per day.  I personally know of other members of my young
onset support group who have been on levodopa for years longer
than I have, take higher doses than I did and yet are far less dyskinetic
than I was pre surgury.  Yet another is on the same meds he was on
when I first met him 9 years ago and his PD seems to have not got any
worse in all that time.

Why we progress a such different rates is just one of the many questions
yet to be answered.  Is dyskinesia caused by long exposure to levodopa
causing the receptors to become sensitised or is it a response to
the stage of the disease the individual has reached is another.  The
answers to these questions are not academic.  They profoundly affect
the lives and choices of the newly diagnosed.  The decission when to
start levodopa is central to the treatment of early PD. In my own case
if I had not started levodopa early I would have had to stop work.
Paradoxically it was the levodopa induced dyskinesia which lead to
my early retirement 6 years latter. When I made the choice to start
levodopa it was an informed choice in so far as information was available.
I knew of the possibility of dyskinesia.  We do not yet know exactly why
this is so.  We do know that, no matter how carefully we use levodopa,
some of us are going to become dyskinetic sooner rather than later. I
would go so far as to say that on the basis of what we know (as opposed
to what we believe) it is irresponsable for anyone, doctor or layman, to
ignore
that fact when dispensing advice to newly diagnosed PWP.

Dennis.

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Dennis Greene 48/10
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http://members.networx.net.au/~dennisg/
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