hi all

karen bardo and i are "playing catch-up" on the history of the
Maine Parkinson Society's development

janet

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One Man's Nightmare Helps Parkinson's Sufferers:
The Maine Parkinson Society is Dedicated to Providing Information on the
Disease

Monday, August 3, 1998 - 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.

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 (Karen Bardo) 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."

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 worst 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. 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.


Caption: PHOTO: color: Staff photo by Jack Milton:
[Gregory Leeman of Portland, who has Parkinson's disease,
formed Maine Parkinson Society after he had trouble
finding information on his condition.]

By Meredith Goad, Staff Writer
Copyright 1998 Blethen Maine Newspapers, Inc.
Press Herald Online:
http://www.portland.com/

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Greg Leeman's Hole-in-the-Head Gang Story:
http://www.geocities.com/janet313/pienet/leeman/

The Maine Parkinson Society:
http://www.geocities.com/maineparkinsonsociety/

janet paterson, an akinetic rigid subtype parkie
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada
EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/