one role that we can be active playing is lobbying how research is funded.
this is in addition to lobbying for funds.  the "micromanagement" by
Congress of U.S. research activity by NIH may be a deflector excuse to
increase funding.

The research funding recommendation of the March 7th satellite symposium
was to not fund Parkinsonism research; rather, to fund neurodegenerative
diseases research; and, to fund the "best ideas".  Determining the "best
ideas" is a process that is utopian and requires disclosure before
patenting so will never happen in reality in our capitalist,
reward-seeking, social culture.

Perhaps we who are interested can influence cooperative motivation into how
to lobby creating a better likelihood that will become a winner for us
patients, the researchers, the drug manufacturers, and the NIH and
politicians who have been spending money from taxes and shareholders to "do
good".

There are numerous interesting facets of researching neurodegeneration -
the conjectures the experts are debating relevant to the etiology
process(es) currently.  The education of all of us is important.  If the
separate spheres of expertise interact, the maximum benefit will accrue -
especially if best efforts are made to produce concise and accurate
presentations of the state of the art (including the leading conjectures
and rationale) from each expert.

It is my hope that the interested, educated, parkinsonians be allowed,
encouraged, invited into the mainstream of the scientific and medical
researches in etiology, symptomology, treatment protocol, medicines
efficacy, drug trials, et cetera - because we can benefit and contribute to
each other.  Some amount of Serendip exists in having interested parties
interact via internet web sites, PARKINSN listserver, other methods of
learning what is known.

New algorithms of treatments and new drug trials and surgical procedures
results might benefit from patients and interested persons assisting via
brainstorming - as well as via political involvements relevant to FDA and
federal funding.

The levodopa ingestion, stomach effects, passage into the small intestine,
absorption into the blood, transit to the brain and elsewhere, transit to
various loci in the striatum, effects is worth some effort to be presented
as a monograph.  This would educate and allow and encourage further study
which might be of much value if levodopa remains the primary drug.  The
interactivity of drug ingestion with the rest of diet by the patient is
obviously of much import.  There are conflicting recommendations as well as
no recommendations at all - sometimes, incorrect or incomplete advice.
Dopamine is critical to mentation and emotion in directly affecting and
effecting these characteristics of the brain and nerve networks.

A specific question is: what drug efficacy - effectiveness information
exists on selegiline hydrochloride?

What drugs in clinical trials that are clearly working well?

The recent information about the strain of mice without the enzyme that
inactivates the dopamine and returns it to "storage" must provoke some
discussion.

The "I have a dream" theme might be this listserv incubating
do-it-ourselves monographs that are FAQs become "algorithms" edited and
re-edited into sections of a cyber-earth encyclopedia that the
cyber-library-of-Congress forms and maintains for physicians, pharmacists,
patients, and students can access.  This could start from
volunteer-prepared home-page monographs by a few of us.  Or, it may already
exist in some measure at a medical school?  or the database of a clinic or
research physician.

The skill of editing everything one can collect on a specific topic into
one concise monograph can be learned by doing.  Whether cyber-earth will
have a super-encyclopedia of the whole of human knowledge that is available
to all without cost is unknown, but I "see" that as perhaps the most
efficient cyber-textbook to make education available to all to any depth
desired by the researcher-student.  (Much of this cyber-textbook will not
be something so confined as text - lectures, demonstration experiments,
videos and interactive multimedia experiences with URLs to who knows what
will be there.)

ron      1936, dz PD 1984
Ronald F. Vetter <[log in to unmask]>
http://www1.ridgecrest.ca.us/~rfvetter/