FROM:
 The Atlanta Journal and Constitution
 December 25, 2001 Tuesday, Home Edition
SECTION: Features; Pg. 1C

HEADLINE: Healthy Living: Parkinson's steps outof shadows

BYLINE: CHARLOTTE MOORE

  " The roster of people we know with Parkinson's disease has gone from
zilch to
(1) Michael J. Fox, (2) Janet Reno and (3) Muhammad Ali. And the list
goes on.

   We don't really know them --- like what their least-favorite flavor of
ice
cream is or whether they sleep on their sides or backs. But we do know
them.
They came into our lives a long time ago. Over the years, we watched
them,
laughed with them, cheered them on, supported them. When they fell ill,
we wept
for them.

   And because we knew them, we began to pay attention to the disease.

   Once upon a time, a man stumbling down a street was perceived to be
sloppy
drunk. Now a first impression is likely to be that he's suffering from
Parkinson's disease.

   Before, the phrase neurological diseases was associated with
Alzheimer's,
cerebral palsy and Lou Gehrig's disease. Now, Parkinson's disease is
customarily
listed as a prime example of a neurodegenerative disorder.

   It was nearly two centuries ago that English physician James Parkinson

attempted to label a neurological disorder that most notably caused its
victims
to tremble involuntarily. Parkinson dubbed it "shaking palsy."

   It would take scientists and physicians decades to come to terms with
the
debilitating disorder, an ailment they discovered was brought on by the
degeneration of dopamine-producing brain cells.

   One million Americans are believed to have Parkinson's today. The
exact cause
of the disease is still unknown. Its effect on the nervous system most
often
results in uncontrollable shaking as well as muscle stiffness, loss of
balance,
slurred, monotonous speech and, in some cases, constipation, depression
and
difficulty swallowing and writing.

   Most Americans know more today about Parkinson's disease than they did
10
years ago. We're more willing to sympathize with people who have the
disease.

We're more likely to send a check or volunteer time to a local
Parkinson's
disease association.

   Arguably, it is the affliction of the highly visible, celebrated few
we feel
we know well that has boosted the nation's efforts to find a cure for the
victims we will never know.

Regular folks hit, too

   Ken Fight. Marvin Berger. Margaret Miller. Steve Naylor. Dr. Don
DeBra.
Chances are, you've never heard of these metro Atlantans. But if you
support
Fox, Ali or any other celebrity in public campaigns against Parkinson's
disease,
then indirectly you support these five strangers.

   They, too, have Parkinson's.

   Fight, former district manager for J.C. Penney, was diagnosed with
Parkinson's symptoms nearly seven years ago.

   "There's no definitive diagnosis except brain autopsy," Fight said,
"and I'd
prefer not trying that just yet."

   Berger prides himself on once upon a time regulating the entire city
of
Chicago as a supervising sergeant on the police force. "Now I can't even
shave,"
he said.

   DeBra, diagnosed with the disease in 1997, used to work as an
endocrinologist
specializing in glandular diseases. He knew something was wrong when he
began
experiencing leg tremors.

   "I'd be examining a patient on the examining table, then turn around
and fall
down," DeBra said. "There was trouble with my speech, I had trouble
sleeping, I
just overall didn't feel well."

   Fight, Berger and DeBra are members of the American Parkinson Disease
Association's Atlanta chapter, which is headed by Berger's wife, Barbara.
The
group is nearly 500 strong and includes victims and their caregivers.

   About 30 of them gathered last week at Westminster Presbyterian Church
for a
Christmas potluck and support group meeting.

   They are a congenial bunch with an obvious connection. Some talked
about the
film "Ali" --- opening today in theaters nationwide --- and spoke
graciously of
the film's subject, a man-Goliath who once boasted superhuman qualities
of
floating like a butterfly and stinging like a bee --- an assertion few
people
challenged.

Muhammad Ali as ally

   But that was then.

   Now the physically impaired Ali is a mite less intimidating. He
shakes. His
mobility is strained. His speech is labored.

   In Ali's case, the disease decimated what remained of one kind of
prizefighter but initiated another. To the ordinary Parkinson's
sufferers, like
those who gathered at Westminster Presbyterian Church, go the spoils.

   "Celebrities have the eyes and ears of Congress. When they testify,
they can
move members of Congress in ways that others cannot," said Dr. Mahlon
DeLong, a
Parkinson's specialist and chairman of the neurology department at Emory
University School of Medicine, an institution renowned for its study of
neurological disorders. The National Institutes of Health referred Ali to
DeLong
nearly six years ago.

   "Muhammad is committed to many causes that are meritorious and have an
impact
on people and their lives," DeLong said.

   "He embraced Parkinson's disease rather late as a cause. I've been
with him
and his wife, Lonnie, at congressional and societal meetings. Celebrities
are a
powerful motivator and make a powerful impact --- not only on us, but on
the
whole funding mechanism and with public awareness. I don't think we'd be
as far
along as we are with our research were it not for them. The importance of
this
cannot be [overstated]."

   Other advocates of Parkinson's disease funding and research agree that
celebrity sponsorship is priceless.

   "It has a tremendous result," said Joel Gerstel, the New York-based
APDA
executive director. "When we first organized in 1961, nobody knew what
Parkinson's was.

   "Today, as a result of Muhammad Ali, Michael J. Fox, Janet Reno and,
just
recently, [journalist] Michael Kinsley, the media draws attention to the
disease. That increases the support and the funneling of money to fund
research
to find a cure."

   The APDA sponsors 65 chapters, including the one in Atlanta, and more
than
800 support groups nationwide.

   Robin Elliott, executive director of the New York-based Parkinson's
Disease
Foundation, said the foundation reported a 100 percent increase in the
number of
gifts received --- from 21,000 in mid-1999 to 42,000 in mid-2000 --- one
year
after Fox went public with his Parkinson's diagnosis.

   "The celebrity connection is the greatest single factor in that
increase, I'm
convinced," Elliott said. "You can't buy that kind of asset. They have
performed
miracles for our cause.

   "We're deeply sorry and sad that it's taken this, but consider what
the
celebrities are able to do. The fact is, without a celebrity presence,
your
disease is possibly looking at less money, less visibility and fewer
scientific
leads."

New spotlight on hope

   The Michael J. Fox Foundation raised $10 million this year to fund
research
into finding a cure for Parkinson's, said the foundation's executive
director,
Deborah Brooks.
   "The opportunity to increase visibility is what helps in terms of
increasing
funding and awareness for a disease," Brooks said.  "When committed,
intelligent
and energetic people focus their attention --- regardless of celebrity
status
--- is when the highest impact seems possible."

   Margaret Miller and Steve Naylor are not celebrities.

   In addition to Parkinson's disease, Miller is suffering from
osteoporosis and
osteoarthritis and recently was diagnosed with breast cancer.

   Naylor was forced to retire from his job as a post office maintenance
technician after his Parkinson's diagnosis 10 years ago.

   The disease has robbed them of their sense of smell, and Naylor is
part of
the small percentage of victims who suffer chronic aches and pains.

   Both spend much of their time doing all they can to help raise
awareness and
funding to find a cure for the disease.

   "I wouldn't want anybody to have this disease," Naylor said. "But I
think
Michael J. Fox is amazing and Ali shows a lot of courage. I know how much
effort
it takes to just keep moving."

   Miller suspects that when she was diagnosed in 1993, it was difficult
to
think of ever finding a cure for Parkinson's disease.

   But that was then.

   "Now there's definite hope," she said. "Because of the combined
efforts of
celebrities as well as dedicated individuals like these courageous people
right
here in this group, we are so close to finding a cure --- I just know
it."

GRAPHIC: Photo:
Lynn Fight helps her husband, Ken, with his meal at a Parkinson's support
group
party at Westminster Presbyterian Church. / PHIL SKINNER / Staff Graphic:
PARKINSON'S DISEASE: AT A GLANCE
> Parkinson's is a progressive disorder of the central nervous system
affecting
more than 1 million Americans.
> Parkinson's typically strikes men and women older than 50 but also is
diagnosed in younger people. As life expectancy increases worldwide,
experts
project an increasing number of people will be victims of Parkinson's
disease.
> Parkinson's typically is treated with the drug levodopa. Once it
reaches the
brain, levodopa is converted to dopamine, which replaces the substance
not
present in sufficient amounts in Parkinson's patients. Levodopa does not
prevent
changes of the brain typical of Parkinson's disease and may produce side
effects. New drugs recently approved offer a wider choice of medications;
more
are being studied."

"For more information
> The Atlanta chapter of the American Parkinson Disease Association
operates in
conjunction with the Emory University School of Medicine. The National
Institutes of Health recently awarded the Emory University Center for
Research
on Complementary and Alternative Medicine a five-year grant and three
individual
research grants totaling $5.7 million.
Researchers are studying the use of magnetic stimulation to relieve
Parkinson's
disease-related depression, the use of Valerian root to treat sleep
disturbances
and the effect of Chinese exercises such as tai chi and qi gong on motor
disabilities associated with Parkinson's disease.
For more information about the Atlanta chapter or to make a donation,
contact
Barbara Berger at 770-979-3495.
On the Web
> The American Parkinson Disease Association --- www.apdaparkinson.com
> The National Parkinson Foundation --- www.parkinson.org
> Parkinson's Disease Foundation --- www.pdf.org
Source: American Parkinson Disease"


----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn