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On 23 Aug 2001, at 9:30, Perry Cohen wrote:

> . . .Please provide your opinions and feedback (e.g. more detailed
> or more up-to-date information) on the medications that you see as
> high priority for development.


Hi Perry,

It is important for us PWPs to be able to provide input regarding our
drug needs.  We are the ones who can say what aspects of PD bother us
the most and need a remedy.

I don't know enough about the particular drugs in development to have
an opinion on how I would prioritize them.  However, I do have
opinions regarding priorities for what we want drugs to do.  To get
the ball rolling and stimulate discussion, may I suggest the
following drug functions for the top two places on my wish list?

1st.  Stopping or greatly slowing the progress of the disease at any
stage and in both the central and the autonomic nervous systems.

For people in the early stages of PD who are still functioning well
on medication, such a drug, in combination with existing drugs that
provide symptomatic relief, would in effect be a cure.  There would
be no subsequent need for nerve regeneration or any form of surgery.
For us folks in later stages, at least we wouldn't get worse.

If there can't be a drug that works in both the CNS and the
peripheral NS, then priority should go to the CNS.

2nd.  Reversing primary symptoms with minimal or no surgery.

For reasons of cost and safety, I'd rather take pills than have
surgery.

How should we ultimately decide on priorities?  Best reasons?  Vote?
Concensus?

Phil Tompkins
Amherst, Massachusetts
age 63/dx 1990

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