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Good morning Barbara,

You've touched  on a couple of key issues.  The first one is of equal
importance as the second one.  The quality of health-care we have been
provided with is woefully inadequate.  There's such a lack of uniformity
in treatment and a general sense of apathy amongst the public.  It would
seem as though we're started to make headway on these issues.  Yesterday
Curt over the weekend I talked with several members of the Portland
Newspapers.  I think we are going to see some coverage from this.  I
will include will include in this post a letter by fax to the Newspapers
editor Curt Hazelit.  It may be something people can draw from to
develop letters to provide the voice we lack.  It is time to continue to
forge forward with the enthusiasm you always display.  Because it is
contagious and it keeps many like myself going everyday until we find a
cure.  The following is the correspondence I spoke of earlier:

Maine Parkinson's Society
P.O. Box 11424
Portland, Maine  04104
207-771-0385
Fax:  207-771-0289

May 5, 1998

Curt Hazelit
Portland Newspapers


Dear Curt,

Thank you for taking the time to listen to me today.  I'm sure you get
plenty of requests like mine.  I hope you find the following to be news
worthy enough to find its way into your paper.  I will try to provide a
couple different angles  to cover.  The first one is the start-up of a
nonprofit organization specifically to benefit Parkinson's Disease
sufferers in Maine.  I will cover that with this correspondence.  The
other 2 can be included in any interview provided.  The second angle
would be my life since Parkinson's threw monkey wrench into it about ten
years ago.  The third could focus on the young Parkinsonians located in
the state of Maine.

Parkinson's Disease is a movement disorder caused by the degeneration of
brain cells that produce dopamine, the neurochemical controlling motor
function.  By the time 80 percent of those cells stop functioning,
symptoms of stiffness, tremor and slowness of movement begin to emerge.

The conventional treatment for Parkinson's is a 30 year old drug
commonly known as L-dopa which attempts to replace the missing dopamine
with an artificial substitute.  It usually restores function to a
certain extent and it may at first seem like a sufficient and
beneficial  drug.  But it works inefficiently, it produces side effects,
and eventually it does not work well at all.  As the dopamine cell
degeneration progress, it stymies  automatic movements needed to walk,
talk, swallow, even move at all.

The idea behind the nonprofit was one borne of frustration.
Frustrations from seeing local Parkinson's patients not get proper and
adequate information, treatment and support.  All the national
organizations for Parkinson's Disease earmark most of their funds for
research and lobbying efforts.  There has been some money to organize
local support groups.  These groups are setup to provide emotional
support and educational support through meetings once a month.  It
barely scratches the surface as there are only a little over 100 members
statewide.  There are an estimated 7000 people with Parkinson's in Maine
alone.  There are 1500 people with Multiple Sclerosis in Maine.

Currently there are not any movement disorder specialists in Maine.
There are also not any Parkinson's specialists in Maine.  There are not
any neurosurgeons that perform any of the currently accepted surgical
options for Parkinson's disease.  I would be willing to bet that there
are not many neurologist in Maine who know which neurosurgeons in New
England are available for these procedures.  The variety of drugs used
for treatment in Parkinson's disease add to the confusion.  It is
difficult, even when you keep daily charts, as most of us do, to find a
smooth drug regimen.  It truly adds up to a roller coaster ride that
leave patients in an emotionally drained state.

There is also the problem of insufficient funds provided for care givers
through Social Security disability coverage.  Currently care givers,
probably the most important provider  in a person with Parkinson's
disease's life, get a wage of $6.25 per hour.  This is woefully
inadequate.  Untrained, inadequate and non-loyal are words I have heard
mentioned describing the people that this wage attracts.  Heavy turnover
ratios also remove the necessary continuity to eliminate any added
disruption in already disruptive life.

Uncontrollable movements, speech problems and facial mask tend to make
people with Parkinson's feel self-conscious and often leads to
reclusiveness.  This adds to our lack of visibility, mobility and voice
necessary to get attention in a political system dominated by lobbying
groups that excel at these very attributes.  For as a wise man once said
"the squeaky wheel gets the grease."

We hope by providing some help in answering these local problems we will
improve the quality of life of people with Parkinson's in Maine.
Through improved education, providing a supplement to care givers and
adding social activity we intend to achieve solutions to these problems
that face local Parkinsonians.  Our first Maine Parkinson's Society
Board of Directors meeting is tomorrow night, May 6.  Hopefully this
will provide enough initial information to peak your interest and invite
us to help you provide a story of us.

Thanks for your time,
Maine Parkinson's Society

Greg Leeman
President
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