Hello friends I wrote the following e-mail to this group about three weeks
ago, and was disappointed to see it only produced 3 answers. Surely this
fundamental question should be exposed? After all, we know from their previous
letters that many of our contributors are on the receiving end of one or other
of these strategies - I can't believe that they are content to be led off on
a path to potential damage. Here is the story one more time-
On Fri 17 Dec, Brian Collins wrote:
I have read all the recent e-mails earnestly dealing with moving away from
Sinemet in early Parkinson's, and smiled to myself - a little sadly I must
admit, at the thought of all the discomfort these people are having to put
up with, and even the possibility of real harm. I won't go to the lengths
of quoting all the detailed articles here; suffice it to say that a long
and bitter debate is raging amongst the upper echelons of the neurologist
fraternity, about whether moving away from Sinemet, or avoiding Sinemet for
as long as possible is good or bad for you. Make no mistake - they can't
both be right, and those who are in the wrong camp (The abandon Sinemet
camp if you are not sure where I am coming from) are grimly leading their
patients deeper into the quicksands every day.
So: You can't trust the neuros ! They cannot all be right ! What can we
do ? Obvoiusly there is no point in me or any of our other amateurs who
write to the list running through our ideas - we could also be as wide of
the mark as the professionals. Well, you might care to keep the following
thoughts handy to try on someone next time the subject comes up..
How long do you intend to live ? If you start with that question, and work
back, I think most of you will see that (even with the promise of stem cells)
there is a long road in front of us ( I'm ahead of most of you, but not all,
and it still looks a long road to me. I have already made my Sinemet go
continuously for 20 years- it's easy, anyone can do it, all it takes is a
little common sense. My writing on this subject is available to all, so I
will say no more. What else? Well, I have made the Sinemet go even further,
when it became impossible to use alone at 14 years, and six years on, I have>to take 6 mg of Pergolide to balance the Sinemet, and I'm doing well, but
I am sailing very close to the wind, and the message is: You cannot afford
to play fast and loose with Dopamine agonists. They are, in my view, a lot
more dangerous than Sinemet in their potential side-effects, and must be
treated witth respect. There is a proper place for them, and I think it is
later rather than earlier.
One last warning; The New Agonists cost a LOT more than Sinemet don't
they? When you get your next bit of advice (or read about how great Re-Quip
, Mirapex, etc, etc is) just ask yourself who is paying their wages!
--
Brian Collins <[log in to unmask]> (59/39/34)
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Brian Collins <[log in to unmask]> (59/39/34)
