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I will start with what I hope is a non-controversial sataement: Dyskinesias
are the result of taking too much Sinemet/Madopar. Now hold on, you folk who
suffer from the complications known (I think) as DID or Di-Phasic Dyskinesias
-I'm not trying to stir you up :- For those of us with more conventional
reactions I think the statement is true. Not only that: I have spent the last
17 years of my PD demonstrating that not only is that statement true, it is
possible to navigate between the two extremes of Dyskinesia and Tremor which
form the boundaries. I should add that as I have slowly proceeded downhill,
as we all do, I have made use of a Dopamine agonist (Permax) which does its
job quite satisfactorily for me, and if Permax has unacceptable side effects,
there are a number of alternatives. I would still say however, as a general
rule, that I am more scared and cautious with the dopamne agonists than I am
with Sinemet.

The point of that lengthy opener, is that it is possible to get a lot of
useful life out of Sinemet, without having to suffer from dyskinesias. And
things are happening which may improve that position in the longer term,
like the remacemide trial which I have just started: It is hoped that it
will produce the effects of a 'Chemical Pallidotomy', but a reversible one
- if you stop taking the tablets, the effect goes away. Like a Pallidotomy,
it should be  possible to then use more Sinemet without provoking dyskinesias.

  Like a good many of us, I was kept away from Sinemet when I was first
diagnosed, with the result that I went downhill rapidly, and it was obvious
that something was wrong. I had to tell my employers about it before I really
wanted to, and I was even contemplating retirement on disability grounda- at
the age of 40! Fortunately a new neurologist appeared at the clinic, who
took me off Artane (Useless) and put me on to sinemet. The result was that I
worked for a further 14 years; the first 12 of those in the sort of  high-
pressure jobs that I so enjoyed before PD. These are the sort of issues
that are critical out there in the real world, yet I wonder how many
neurologists know the sort of runaway train that they can start, by an
arbitrary decision to withold Sinemet.

Another item caught my eye a few days ago: a 78-year old PWP, newly
diagnosed, and the neurologist had put him on to selegeline ! I wonder how
many years he was plannibg to withold sinemet in this case  and for what
reason?

   Somebody ought to go out and find out where that jury has gone - I don't
think they should have been sent out anyway, because it appears that they
have been sent out without enough hard facts to enable them to reach a
decision. Yes, I do accept that there are not enough hard facts available. I
just wish someone would do something to break the log jam.

--
Brian Collins  <[log in to unmask]>