At 01:06 PM 8/4/98 , you wrote:
>TA DAHHH <---Drum roll> Greg, m'dear... you're too modest!
>
>Folks, drop whatever you're doing and head on over
>RIGHT NOW to the following Web site to see how our
>own Greg Leeman staged a coup against Parkinson's!
>
>http://www.portland.com/monews/story1.htm
>
Barb, I certainly agree.  But what of our listmembers without web browsing
capability?  For them, I  have taken the liberty of transcribing the text
below.  For the rest of us - sorry about occupying the bandwidth.


<<
One man's nightmare helps Parkinson's sufferers=20

More about Parkinson's disease on the Internet=20


<Picture>At left: Gregory Leeman of Portland, who has Parkinson's disease,
formed Maine Parkinson Society after he had trouble finding information on
his condition.
Staff photo by Jack Milton=20

By Meredith Goad=20
Staff Writer
=A9Copyright 1998 Guy Gannett Communications


Gregory Leeman's dream vacation had turned into a nightmare.

Stuck in the Australian outback during the middle of summer, he was hot,
tired, stressed out and had overmedicated himself with the drugs he uses to
control his Parkinson's disease. Now, paranoid and hallucinating, Leeman
was convinced there was some kind of reptile in his friend's bed.

As soon as he regained his senses, Leeman vowed that upon his return home
to Portland he would research every possible way to improve his quality of
life and prevent something like this from happening again. But doing that
turned out to be a lot harder than he expected.

Leeman was stunned by the lack of readily available information on the
latest treatments for Parkinson's disease. He learned that the state
doesn't have any physicians who specialize in Parkinson's or movement
disorders, even though there are more than 7,000 Mainers who have been
diagnosed with the disease. And there are no neurosurgeons who perform any
of the currently accepted surgical options for treating it.


So Leeman got together with some friends he met on the Internet and they
founded the Maine Parkinson Society, a new organization that is already
coming up with ways to improve the lives of Mainers with Parkinson's.

''I think there's a huge need in Maine in general for at least the better
dissemination of information,'' says Leeman, 37, who is human resource
director at Blue Rock Industries.

''I'm going to make sure that we get information to all the people we can,
pass along to them what all their options are.''

One of the group's first projects is to develop a series of regular
seminars where Mainers could ask out-of-state experts about their
medications or learn about the latest research or treatments for
Parkinson's. The group has already connected with Parkinson's specialists
from clinics at Harvard and Massachusetts General Hospital who have agreed
to help.


Dopamine directs muscles

Parkinson's disease is a chronic, progressive neurological disorder caused
by a loss of the brain cells that produce the chemical dopamine. Dopamine
helps direct the body's muscle activity, so when it's gone the result is
tremors, stiff and rigid muscles, slowness of movement, loss of fine motor
function, and impaired balance and coordination.

As Parkinson's progresses, a person remains as bright as always but
experiences difficulty walking, talking and performing simple daily tasks
such as writing or putting on clothes.

''Without the dopamine you can tell your brain to do it, but the message
doesn't get to the muscles,'' Leeman said. ''So what happens is no matter
how hard you concentrate or try, it's very difficult.''

Although the average onset of the disease occurs around age 60, there are
more and more young people getting the diagnosis. Doctors aren't sure why.

''There's a whole lack of knowledge out there about Parkinson's,'' said
Harold Jones of Augusta, whose 45-year-old daughter was diagnosed with the
disease about two years ago. ''It's kind of like the quiet disease,
basically because people think it's older people'' who get it.

There are more people living in Maine who have Parkinson's than people who
have multiple sclerosis, muscular dystrophy and Lou Gehrig's disease, Jones
notes. And as the baby boomers age, the numbers will only grow.

Yet there are few educational resources available on the local level and
even less fund raising. There are some support groups available for people
to talk about their problems, ''but it's not enough,'' Leeman said.

Only a fraction of Mainers who have a Parkinson's diagnosis attend local
support groups - fewer than 200 people, he said.

''It's very difficult for people to organize these groups because of their
problems,'' Leeman said. ''There's a need locally to get these people out
of their houses and give them some activity, something beyond the walls
they look at each day. (Parkinson's) tends to drive people to reclusiveness
sometimes.''



Signs began with shoulder

That's what was happening to Leeman before he found a surgical procedure
that gave him some relief from his symptoms and ''basically was a turning
point for me in my life.''

Leeman's body began showing signs of Parkinson's disease when he was just
27 years old.

It began with shoulder problems. Then his writing became nearly illegible.
His movements were slow, or sometimes he'd simply ''freeze.'' He'd smile,
but no one could tell.

''If I went to put my arm through a sleeve,'' he recalls, ''sometimes it
took me a minute and a half to get it started.''

The worse symptoms were on his right side. Doctors initially suspected a
brain tumor, multiple sclerosis or Lou Gehrig's disease. Eventually, they
figured out that it was Parkinson's and put Leeman on medication.

After the first few years, the medication didn't work quite as smoothly and
Leeman's condition began to deteriorate. The medication also came with
sometimes-embarrassing side effects - sudden, jerky movements that could
make him kick people or spill drinks on them.

Like many other Mainers, Leeman eventually was forced to go to Boston to
see a specialist.

''But it just got to the point where he could only do so much,'' he said.
''We both got discouraged. He would have to change appointments
occasionally, and it was a hassle to have to worry about when you would
have to go down there.''

As his condition grew worse, he realized he might have to give up driving
altogether. And he started to become more reclusive because he was so
self-conscious about his problems.


Decides on brain surgery

After his disastrous trip to Australia, Leeman began researching his
options - all on his own, because he couldn't find a good, local resource
to provide information.

He decided to try a pallidotomy, a surgical procedure that involves
drilling a hole in the skull and using a probe to deaden the portions of
the brain that are causing problems. The patient remains awake, guiding the
surgeon to the correct parts of the brain by talking about the symptoms
he's experiencing while the probe is inside his skull.

''It took about a couple of hours and the results were instantaneous,''
Leeman said.

Leeman's symptoms are still bad enough that he can't work a full day - and
he may eventually have to have more surgery. But he is much better off than
he was before the surgery.

Leeman and the other members of the Maine Parkinson Society don't want
other people with Parkinson's to go through the trouble he had just to find
the treatment that's right for them.

The group has started a newsletter and web site that features pictures and
personal stories of Mainers with Parkinson's. It also plans to develop a
lending library and resource center that will have a list of surgical
options and regional treatment centers, with advice on how to go about
finding the one that's right for a particular patient.

''We're going to provide some literature on how to apply for Social
Security disability, how they can get local respite care and how they can
get personal care attendants,'' Leeman said.

At $6.25 an hour, it's hard to find good, reliable in-home care, so Leeman
hopes the Maine Parkinson Society might be able to subsidize attendants for
some people in the future, or at least provide them with some proper=
 training.

The group has five people on its board of directors - Leeman is president -
and hopes to hire an executive director some day. It has applied for
non-profit status and will soon begin holding grassroots fund raisers.
Social events will follow.

''We're going to try to help these people have somewhat of a social life
again,'' Leeman said.

More about Parkinson's disease on the Internet

=95The Parkinson Web is a Harvard-based site which offers information on
diagnosing, treating and coping with the disease. =95The American Parkinson
Disease Association offers rental videos to help Parkinson's patients,
families and support groups. Site also includes details of the
association's research grants. =95The Parkinson's Information Web site],
sponsored by a pharmaceutical company, offers frequently asked questions
and links. =95The National Institutes of Health have a site reporting on new
research into the genetic side of Parkinson's.
>>