FROM:  The Record (Bergen County, NJ)
 April 20, 2004 Tuesday
SECTION: HEALTH; Pg. F01

HEADLINE: When Parkinson's strikes early;
The illness usually progresses more slowly in younger victims, who make
up 10
percent of all cases

BYLINE: By BOB GROVES, STAFF WRITER, North Jersey Media Group

   You sitting on your hands yet?

   The first question another woman with young onset Parkinson's disease
asked
Gina Reilly on the Internet was whether she had the same embarrassing
symptom:
When she isn't busy, her hand shakes as uncontrollably as a nervous
ingenue's.

   "Normally, if I'm sitting at a table, I'd sit on my hands," said
Reilly, a
businesswoman in Morris Township. "We all do the same thing. People see
your
hand and think you need a drink, or your next fix," she said, laughing at
the
social awkwardness it puts them in.

   Young onset Parkinson's disease, a non-fatal nerve disorder, struck
Reilly
six years ago. It came shortly after she twice won the U.S. Adult Gold
Ice Dance
Championship.

   "If you look at my hand now, you can see that I'm due for my
medication," she
said recently at a rink. Reilly, 48, was sitting at a table, poised and
ramrod-straight. But her right hand shakes with a self-conscious tremor.
She
needs different pills several times a day and was due for her next dose.

   Her rebellious right hand, however, is the only outward sign that
there is
anything wrong with Reilly, a trim, former competitive athlete who had
just
spent a half-hour gliding around the rink with her skating coach, as
gracefully
as a skater half her age.

   "When you don't have the dopamine, the movement becomes out of your
control,"
she said.

   Parkinson's, once called "shaking palsy," is caused when the right
side of
the brain stops making dopamine, a chemical needed for neural receptors
that
control movement. That often leads to balance problems, a shuffling gait,
shaking, or rigidity.

   More than a million Americans have Parkinson's disease, which is
inherited in
some cases and has been traditionally thought to afflict people 60 years
and
older. But increasing attention is turning to about 10 percent of
Parkinson's
patients who, like Reilly, develop what is called young onset disease
before age
50.

   Parkinson's in Pope John Paul II or former Attorney General Janet Reno
may
not be a surprise. But actor Michael J. Fox stirred public sympathy when
he
disclosed he had young onset disease since his early 30s and bowed out of
his
popular TV sitcom to battle it.

   People tend to generalize the symptoms and treatment of Parkinson's
disease,
said Dr. Margery H. Mark, a neurologist at the University of Medicine and
Dentistry of New Jersey-Robert Wood Johnson Medical School.

   "One thing I can say about Parkinson's patients is they're all
different,"
Mark said. "Some patients come in and say, 'I want to take what Michael
J. Fox
is taking.' But I tell them his Parkinson's is different from yours or
from the
guy in the next room. Everyone has to be very individualized."

   While 60 years old is the average age of Parkinson's patients, young
onset
can occur even before age 40. Younger patients tend to have a form that
progresses more slowly, while those in their 70s have more problems with
balance
and gait and even could have cognitive difficulties, Mark said.

   Physicians are beginning to regard Parkinson's more as a syndrome - a
collection of assorted symptoms, such as fatigue and stiffness - than a
disease,
she said. Diagnosis of Parkinson's usually requires a neurologist to
distinguish
it from other disorders that may mimic it, she said.

   People may come in complaining of weakness. "But with Parkinson's,
they're
not weak. Their muscle strength is normal, but they have a sensation of
being
tired, fatigued. Their limbs are stiff and slow. But they say, 'I'm
weak,'-"
Mark said.

   "So you have to do a full neurological exam to determine whether it's
a
problem with peripheral nerves, or with muscles, or the tracks from the
brain
that are affected in strokes."

   There is no real test for Parkinson's outside of a clinical exam.
Measuring a
patient's response to levadopa, the drug for Parkinson's, takes too long
to show
presence of the disease. Other brain chemical neurotransmitters besides
dopamine
are also involved in Parkinson's, so diagnosis is not simple, she said.

   There are drugs to treat symptoms but none approved yet to cure the
disease.
Some patients who qualify medically will opt for surgical treatment of
their
symptoms. This includes electrical stimulation of structures in deep
parts of
the brain. "This will treat the symptoms and turn back the clock about
five
years," Mark said.

   Though stem-cell research is usually touted as the road to curing
Parkinson
's, Mark says other potential therapies, such as drugs that interrupt
cell
degeneration, hold more promise for a cure quicker. Like Alzheimer's
disease and
diabetes, Parkinson's may be triggered by multiple genetic and
environmental
factors. Genetic research is the way to go, Mark said.

   During the past decade, Dr. Lawrence I. Golbe, also a neurologist at
Robert
Wood Johnson, found a gene that mutates and causes proteins to
"misbehave" and
clump up in brain cells that make dopamine. The gene is located on the
fourth of
23 chromosome pairs in human cells.

   "So there may be ways of putting some kind of lubricant into the gene
to keep
it from clumping up, to prevent Parkinson's from happening in everybody,"
whether the disorder is inherited or not, Golbe said.

   "In short, it's opened up a huge number of therapeutic opportunities
that
have to be tested in animals, then hopefully in people," he said.

   Current research is trying to find what environmental factors, such as
pesticides or heavy metals like mercury, or even lighter ones such as
copper,
might trigger protein clumping, he said.

   "Figuring out how to prevent damage from occurring is more important
than
finding a cause," said Golbe, who is looking for genes that might modify
the
harmful effects of mutation.

   Meanwhile, exercise is one of the best treatments for Parkinson's, in
the
young or old, Mark said. "Studies have shown that patients who exercise
do
better than patients who don't," she said.

   "Why it works, we don't know. But it probably has something to do with
the
cliché 'Use it or lose it.' But you can't go on forever just on that. At
some
point, you need medication."

   Though her competitive skating days are behind her, Reilly still
practices
regularly with her coach, Andy Stroukoff. During a recent lesson, the
couple
breezed up and down the ice, skating forward and backward in synchronized
tangos, waltzes, quick steps, blues steps, swings, spins, rolls, leg
extensions,
and bending lay-backs.

   "Think of yourself as a wineglass," Stroukoff instructed her. "If you
tip it,
the fluid will spill. So hold it by the stem."

   "Whoa!" Reilly exclaimed, after doing a solo spin. "It's harder for me
to
skate by myself anymore, because Parkinson's affects balance.

   "So, if I was a single skater, I'd be in trouble. I'm very dizzy. That
was
not a very good spin. It may have looked fantastic to you, but it's much
more
difficult to balance. So the fact that I'm an ice dancer turned out to be
a very
good thing."

   Ballroom dancing, her other pursuit, is also good for physical and
mental
acuity.

   "You can watch someone [with Parkinson's] shuffle out onto the dance
floor,
do a beautiful waltz, then shuffle off," she said. "It's an amazing
thing. If
you become sedentary, it'll become worse faster, and a lot of people sink
into
depression."

   Reilly began developing symptoms in 1998, including dystonia, or
sudden
muscle spasm. She wrote them off as muscle strain, until she was
diagnosed with
Parkinson's last year. Her grandfather also had the disease.

   "It never entered my mind that anything was wrong," she said. "It's
such a
subtle thing at first."

   The Parkinson's hasn't progressed beyond her tremor, and it hasn't
disrupted
her work as a computer embroidery artist or her career as a semi-pro
singer,
which she first pursued as a young woman in New York nightclubs. Her
husband,
Jim, is an investment banker and an avid hockey player. They have a
daughter,
Caitlin, 16.

   "My hope is maybe I'll just shake all my life," she said. "I'm the
eternal
optimist. I'll be fine, but if I'm not going to be fine, I'll deal with
it.
There are so many people worse off."

   Reilly will sing and host a musical gala with celebrities, benefiting
Parkinson's organizations, at 7 p.m. Friday at the Martinsville Inn. For
information, visit musicalmagicgala.org or email greilly@yopa .org.

   "When I tell people I have Parkinson's, they say, 'How can you have
it? You
're so young,'-" she said.

   "I don't have many symptoms. I just shake in the right hand, which is
very
easy to hide, except when I get anxious or nervous. But that's one of the
'benefits' of Parkinson's: I'm allowed to shake."

   For more information about Parkinson's, call the American Parkinson
Disease
Association at (800) 908-2732 or visit apdaparkinson.org or the Young
Onset
Parkinson's Association at yopa.org.

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