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Recently I attended the PD Support Group at Emerson Hospital (Concord area,
MA).  This was my first time at this particular group.  The day's speaker was
to be Dr. Russell Butler, a neurologist on the staff at Emerson Hospital and a
clinical professor" at Massachusetts General Hospital in Boston.  George
Lussier introduced me via e-mail to the group, and since I have some questions
about medications I thought it would be useful to attend.

These Concord  area  sessions are held on alternating Wednesdays, from 2:30 -
4:00 PM. The first half hour is devoted to exercises,  conducted by a physical
therapist, and, following a brief refreshments break, the main topic is
presented.

About 30-35 people (PWP & Caregivers) there, and George told me later that
Dr.Butler, who has been George's neurologist for the past 15 years, was as
excited and "interested" (in Dr. Butler own words) as George has ever seen
him.  Dr. Butler clearly views the world for the PWP as about to take a giant
step forward, primarily because of the new medications that are on or are
about to come to the market place.

Dr. Butler began his remarks with a clarifying summary of the classical
syndrome and symptoms of Parkinson's Disease, as distinguished from
Parkinson's Plus, Multiple Systems' disease, Postural Independent Disease,
Richards/Steel Syndrome, Lewy Body disease, and Shy Draggers disease.  He went
on to discuss current medical perspective on several selected major "hot
topics" of concern for PWP, their caregivers and medical personnel, including:

1. Impotency -- a major problem for most males with Parkinson's.  Dr. Butler
described the elements historically that have been used to treat it (including
bromocriptines, yohimbine, papaverine, Viagra (unknown effect in PD).
2. Tricyclic antidepressants
3. Several of the newer medications, including:
· The agonists Mirapex and Requip (which actually take the place of dopamine -
Dr. Butler noted that Mirapex seems to be used with better results than
Requip, although it has the side effect of  creating hallucinations,  which in
some individuals can mount to schizophrenic levels) and Permax (which he
referred to as the drug of choice, due to the fact that it seems to have the
longest tailing effect.with the difficulty that the titrations are very
difficult [small pill]).
· The COMT inhibitors, aimed at blocking the breaking down effect of levadopa
-- Entacapone which has peripheral effects and a short half life and Tolcapone
(Tasmar), which yields peripheral and central effects, and has the ability to
increase the dopa concentration by as much as 70%).  Both of these have side
effects, including nausea, vomiting, sleep disorders and headache.
4. Sleep Disorders related to PD -- restless legs (cramping causes it),
sudden  awakenings, becoming sleep deprived.
5. Dementia cognitive dysfunction
6. Severe hallucinations

During the Q/A session that followed, Dr. Butler mentioned that the idea of a
protein free diet for PWP is becoming less and less important, as the
amplitude and choice of available medications has now reduced it as a major
issue.  He also mentioned that he rarely prescribes the "CR" version of
Sinemet because he finds it too unreliable.  Dr. Butler also said that recent
geriatric research has made it clear that, as the population ages, virtually
everyone will  contract PD if they live long enough (estimated to mean by age
140).  He also emphasized that each individual PD patient reacts uniquely to
the medications, and that neurologists have  reflected a growing recognition
that their patients' reactions also vary considerably at different times of
the day.

A very helpful session, and a most interesting group of participants, for both
of which I reiterate my most sincere thanks.

n.b.  The above notes are my own; they are not intended as a formal recording
of the experience, nor should they be considered "advice".