Re: Emily/ControlG of One

[Rayilyn Brown <RayilynLee@xxxxxxx>]

Emily, thank you  so very much for your kind concern.  I sense you are like
me, you want to find solutions and make things right, which may not be
possible.

I hate to belabor my point re Drs... but there are only so many things they
can offer.   I can't afford to fall asleep at the wheel of my car while on an
agonist that doesn't work, or keep taking Sinemet when it keeps me from
walking.

I went thru all kinds of experiments with Drs I liked and trusted  when I had
cancer, but never again.

Now, re PD, three neuros told me to hold off on Sinemet if I could.  One at
world famous Scripps Clinic said "PD meds are tricky".   The chief honcho
Movement Disorder guy in San Diego also told me to stay away from S if I
could and my neuro here in Murrieta said it was up to me.  Another one wants
you to keep piling on the drugs even if they don't work. Now what do you
think they are trying to tell me?

.Murray Charters will probably be the first to know when something that
really works comes out and my primary care Dr. thinks I will be the first to
know.

None of the Drs. I"ve seen were ever "upfront' about what a PWP is getting
into with PD meds.  I just think we should DEMAND BETTER MEDS, HIRE SOME
LOBBYISTS or it will ne decades before there is any real hope.

I just think the newly diagnosed should hear another view. But hey, I'm for
any med that works, or any Dr. who can help, Rayilyn

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