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It Can Start As a Quiver - Ultimately Parkinson's may steal one's autonomy=
=20

BY BELINDA YGLESIAS - Daily News Staff Writer

To gauge  the magnitude of the first small quiver in his left hand, 14 years
ago when he was debonair and barely 53, see him as he is today. He fights
his left arm wildly shaking, his left leg twisting inward with spasms that
make him stumble when he tries to walk. He looks through his window with
gorgeous eyes, the part of him, he says, that is turning to bits and pieces.=
=20

This is the face of Parkinson's disease on Don Freel, white-haired,
blue-eyed at age 67. He no longer goes to the symphony.=20

"People manage in that first, split-second of eye contact," he says in slow,
slurred words, "to look away."=20

Parkinson's disease is stalking with a vengeance seen on any random sidewalk
where people move with bodies stooped, hands trembling and faces frozen as
though rendered in wax.=20

"Many days I see people on the street who I know have Parkinson's, and I
wonder if they know," said Dr. David Dickoff, clinical assistant professor=
 of
neurology at Mount Sinai Medical Center.=20

Many of them are famous. Muhammad Ali and Attorney General Janet Reno, Pope
John Paul and the Rev. Billy Graham have it. President Harry Truman and the
late actress Deborah Kerr had it. Adolf Hitler had it.=20

Most are ordinary people doing ordinary things when something, a flicker,
strikes.=20

At 2:30 p.m., Feb. 13, 1983, Freel, a high-flying computer services sales
executive, was making phone calls in his midtown apartment when his hand
began to tremble.=20

Margot Zobel, a 60-year-old computer consultant, was putting on makeup in
her upper West Side bathroom 10 years ago when she dropped a tube of=
 mascara.=20

Bill Thorson, 59, climbed from a Westchester swimming pool 20 years ago and
felt his right foot slightly drag.=20

Ramon Cardona, 36, a single father raising two daughters in the South Bronx,
was 16 the first time he fumbled with the buttons on his shirt.=20

Each is in a stage of a degenerative, incurable brain condition that
mysteriously kills the brain-cell suppliers of the body's
movement-messenger, the chemical dopamine.=20

They are among 1 million stricken Americans, a toll rising by at least
50,000 new cases annually, 135 per day. More people have it than multiple
sclerosis,
muscular dystrophy and Lou Gehrig's disease combined.=20

Forty per cent who get Parkinson's are younger than 60; 30% are not yet 50,
10% not yet 40. The count will rise as baby boomers gray.=20

"I can't describe the jolt when I diagnosed my first Parkinson's patient who
was younger than I was," said Dickoff, who also heads neurology at
Westchester's St. Joseph's Medical Center and Yonkers General Hospital. "He
was 36. I was 37. I could see his future."=20

Even as Parkinson's invades, finding it is not a given. There is no test.
Diagnosis rides on a clinical multiple  choice. The body must exhibit a
combination of features: tremors, rigidity, imbalance.=20

As likely as not, the stricken have trekked from doctor to doctor only to be
told they are depressed, arthritic or, as Zobel puts it, "just plain crazy."=
=20

"A guy comes in with classic hypophonia, soft speech, and the doctor says
laryngitis," said Dickoff.=20

By the time symptoms stir, 80% of the dopamine-bearing cells are dead and
the clock to getting sicker is ticking.=20

A cure may hover, but not without a price. "We're within five to 10 years,
if there's enough funding for research," said Dickoff.=20

Time remains the enemy. Given enough, Parkinson's can doom its victims to a
vegetative state.=20

Freel, Zobel, Thorson and Cardona do not consider life down the road. They
take the dopamine-replenishing drug, L-dopa, the backbone of treatments, to
ameliorate symptoms.=20

It is, at best, a stopgap. "You can reverse disability for five or 10 years,=
 or
even longer," said Dickoff. "But the medication regimen may lose its punch,
and the disease again disables, this time from a combination of its
pogression and medication side effects."=20
=20
When L-dopa failed, Thorson braved a pallidotomy, an experimental surgery
that attacks symptoms by burning a hole in the brain's movement mechanism.=
=20

"Microscopic smart-bombs can zero in on specific symptoms based on a
reconnaissance map of the brain's circuitry," said Dickoff.=20

Cardona underwent a controversial and futuristic technique =97 a fetal=
 tissue
transplant.=20

"Living cells genetically programmed to make dopamine are harvested from
fetuses and transplanted through a tiny straw, guided by a computer, into
that part of the brain lacking dopamine," said Dickoff.=20

"I just want to quit shaking," said Cardona.=20

"I see in the mirror a masklike face, scary," said Zobel.=20

"Surgery made me better. Now I'm worse, desperate for solutions," said=
 Thorson.=20

"Death is not the problem," said Freel. "Living is the problem."=20

Their lives today began with a scientific breakdown.Think of the body as an
engine and a part of the brain, the substantia nigra, as storing the oil=
 that
lubricates the engine and makes its movements fluid," said Dickoff. "The oil
is dopamine."=20

The death of dopamine-producing cells triggers the symptoms named for London
surgeon James Parkinson, who described them in 1817. Nobody knows what
causes the cells to die.=20

Theories lurk in unknown genetic quirks and environmental blunders.=20

"We know that in the past, natural insults such as flu viruses, poisoning
with certain metals or carbon monoxide exposure have been known to cause
diseases resembling Parkinson's," Dickoff said.

"There is probably a genetic pre-disposition, but clear familial cases such
as parent-to-child transmission remain rare."=20

Zobel is lucky. She remains on the low end of a five-stage Parkinson's ruler
that edges from no visible symptoms to incapacitation. But she can't write
legibly. Sometime she mumbles or her leg jerks.=20

Freel is farther along the ruler. "I take 27 pills a day to fend off
symptoms that come in bunches," he said. "I can't go to concerts anymore,
because I start the whole row shaking like a leaf."=20

A possible next step, a pallidotomy, isn't for him: "They don't tell you
about the misses, when they go into your brain aiming for a tremor and they
make a
small error and hit your memory."=20

Former IBM executive Bill Thorson knew the risk: "I know two 'misses,' a
friend made incoherent, the other partially blind."But he took it Oct. 26,
1994, at Atlanta's Emory University.=20

For the 10-hour surgery he was conscious to help guide surgeons around his
brain. "They screwed a metal halo like the World's Fair unisphere into my
skull. They bored a half-inch hole. They took a stainless steel,
sound-sensitive probe, going for the spot where dopamine-deficient messages
travel. They cauterized it to destroy the messages' errant passageway.=20

"They said, 'Wiggle your toe,' 'Move your finger,' to find where they were
in my brain. I told them I saw a flash of light; they were too close to the
optic track."=20

Finally, "They said, 'Lift your leg.' I did it easily. I wanted to run the
hallway."=20

By the time Ramon Cardona was diagnosed at age 30, six years ago =97 14=
 years
past his fumbled buttons =97 his body was a tremor mass: "It had turned into
garbage."=20

L-dopa helped, then failed.=20

His severity took him to Denver's University of Colorado Health Sciences
Center. On Jan. 18, 1996, he underwent a fetal tissue implant.=20

The double-blind study gave some candidates placebos. Last March, Cardona
learned he got the real thing.=20

Anti-abortion groups have opposed the research.=20

"But many scientists believe it offers the best chance of cure," said
Dickoff. "These cells are programmed to live a lifetime and are less likely
to incite attack from the recipient's immune system."=20

Only time will tell if the transplant makes Cardona better.=20

"My 'off' periods are not as severe, but I still have 'all of the above,' "
he said.=20

Cardona's operation is not the only look into the future. An abnormal gene
was recently found in some Parkinson's patients.=20

Yesterday, in Manhattan, the country's oldest research network, the
Parkinson's Disease Foundation, marked its 40th anniversary with an
international symposium of specialists.=20

The cutting edge of research expands new-generation medications that mimic
dopamine and stretch its efficacy; neuro-protective drugs that slow cell
death; neurotrophic proteins that boost cell life; genetic engineering, and
"stimulation" surgery that puts Pacemaker-like electrodes into the brain.=20

According to the most recent data from the National Institutes of Health,
Parkinson's received $26 per patient for direct research funding. It trailed
Alzheimer's, at $54 per patient, and multiple sclerosis, $158, in NIH funds.=
=20

Two bills, one each in the House and Senate, would hand the NIH $100 million
for research.=20

Freel sees himself as he may one day be: "Sitting in Carnegie Hall again,
listening to Beethoven, a beautiful woman beside me," he fought to form the
words, "is about as happy as I can imagine."=20

The people in this story will gather in Central Park on Sept. 27 for the
fourth annual Parkinson's Unity Walk. Founded by Parkinson's patient Margot
Zobel, the walk aims this year to raise $150,000 for research.=20

"You don't have to walk to participate," said Zobel. Participants should
sign up soon. For information, call Zobel at (212) 580-6505.=20

For information about the disease, call the Parkinson's Disease Foundation,
(212) 923-4792.