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Hi Geoff,
Welcome to the Parkinsn List and thank you for your comments on When
Parkinson's Strikes Early. I am one of the co-editors, and it means so
much to hear that the book has been helpful to its readers. Many of the
contributors are still members of the Parkinsn list, and I'm sure they
also are happy to know that their words have traveled throughout the
world's  Parkinson's community and making a difference in people's lives.

This year's PAN Forum was the largest and I think most energetic I have
been to. There was such a great feeling of community among the
participants. There were many new participants and all were determined
that our voices would be heard by our government representatives.  We
heard such promising reports about research  taking place in the NINDS
and many other Institutes. Yet  we also heard that President Bush has
proposed only .05 % increase in the 2006 NIH budget - with the biomedical
inflation rate at over 3% - this would result in many ongoing promising
research projects being halted. This makes no sense!!  PAN is advocating
for a 6% increase in the NIH budget in the U.S.
More on the PAN legislative agenda is forthcoming.

It would be interesting to hear how  Parkinson's  research funding is
faring in other countries.

I also wanted to reply to your statement about not starting on levodopa
or Sinemet. There has been considerable controversy about this for many
years. It is true that many PWP develop dyskinesia after about 5 years of
treatment.  Many patients are now started on a dopamine agonist like
ropinerole as a monotherapy first, and can delay sinemet for a longer
period of time. But I think most PWP find that eventually you reach a
point where the quality of life is being diminished by the symptoms and
it is time to begin Sinemet therapy. I have to say that in the beginning
it really works well! You may feel almost normal for awhile.   Hopefully
we will have better ways of controlling the dyskinesias in the coming
years. There are a number of treatments currently in clinical trials that
may control these side effects. It's a constant balancing act with PD .
My advice is to learn as much as you can about the disease and try to
find a good Movement Disorders specialist who is also willing to listen
to you.

Linda

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