Part - 2
It Can Start As a Quiver Ultimately Parkinson's may steal one's autonomy=20
By LINDA YGLESIAS
Daily News Staff Writer
Their lives today began with a scientific breakdown.=20
"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.=20
"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:=20
"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."=20
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.=20
"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 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. 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.=20
Original Story Date: 060197
Original Story Section: Beyond the City
Margaret Tuchman (55yrs, Dx 1980)- NJ-08540
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