-- [ From: Seymour Gross * EMC.Ver #2.5.3 ] --

The article below appeared in today's Philadelphia Inquirer on the Op-Ed
commentary page, following several months of exchanges of e-mail and
phone conversations with Rachel Simon, and finally her editor's approval
influenced by the Michael J. Fox publicity, stem cell research, and the
death of Mo Udall. This interview took place two weeks ago in my home
with Richard Pikunis.  Rachel Simon was terrifically cooperative,
competent and compassionate and had immersed herself in Parkinson's
material.  Richard was his usual open, honest, sensitive self.  If you
would like to comment on the article please e-mail Rachel Simon at
[log in to unmask]  and/or her editor, John Timpane at
[log in to unmask]

Philadelphia Inquirer
January 6, 1999

Amid ethical, medical uncertainty, Parkinson's quietly claims youth


By Rachel Simon
Unlike with Michael J. Fox, it didn't start with tremors.

For Richard Pikunis, it started with one foot stomping on the other as
he stocked the dairy cases at his job at the Mount Laurel Shop Rite. He
had no idea why his sudden tripping happened. He was 24. Engaged.
Applying to law school, planning a career with the FBI catching the bad
guys.

He thought Parkinson's disease was something that came with liver spots.
Really, he never thought of Parkinson's at all.

He saw a podiatrist. But his feet went from clumsy to cramped. As months
ticked away, he walked more slowly, his balance off, his face losing
expression.

When he pulled a crate from the supermarket truck, "it felt," he says,
"like the crate was controlling me."

The podiatrist sent him to a neurologist, who sent him to the Movement
Disorder Center, now at Pennsylvania Hospital. This is how it goes,
following the scattered clues that lead to a diagnosis. Even the best of
Sherlocks, and their doctors, seldom see it immediately. How can they?
Parkinson's hides inside the brain, occurring when certain neurons --
the ones producing dopamine, which transmits signals for smooth muscle
activity -- die.

And Parkinson's announces its presence inconsistently. You might get all
four major symptoms -- tremors, rigidity, slowness of movement, impaired
balance. You might get only a few.

Then there's the myth that Parkinson's is a geriatric disorder. But 5 to
10 percent of the 50,000 people diagnosed each year are under 40.

This may be why Pikunis didn't cry when he finally heard, at 27, "You
have Parkinson's." He didn't know enough to worry. But it may be why his
mother, sitting beside him, held back tears.

He would not get better. He would only get worse.

In the three years since, his body increasingly seemed the wrong size,
the wrong shape. He learned that he might lose the ability to walk,
speak, swallow and breathe. His dreams of catching the bad guys sped
beyond his stiffening gait.

There is no known cause. It can strike anyone, from fresh-scrubbed
Michael J. Fox to spry-footed Muhammad Ali to hardworking Janet Reno to
elder statesman Morris Udall, who died last month of Parkinson's.

There is no cure. The best treatment is the drug L-dopa, which
encourages nerve cells to make dopamine. The movie Awakenings portrayed
the miracle of this therapy, used there on encephalitic patients. But
the drug loses effectiveness as Parkinson's progresses.

Now, Pikunis schedules his day by L-dopa pills -- knowing that the
miracle might recede. The cramping might become falls, the slowness
rigidity. The bad guys might then get him.

But he believes that science may beat Parkinson's yet. There are
promising treatments, the most promising of which involve stem cells,
one of the most ethically complicated discoveries of the century.

Stem cells are the all-purpose cells from which all tissues of the body
develop. Theoretically, if harvested from a fertilized human embryo and
implanted into a brain, stem cells have the potential to produce the
dopamine needed by Parkinson's patients, as well as treat those with
diabetes, stroke, Alzheimer's and spinal cord injuries.

But should research continue on stem cells from embryos -- even if these
embryos were intended for in-vitro fertilization, were not used and
would have been destroyed?

Many Parkinson's patients think so. Some politicians don't agree. The
federal government has banned human embryo research, and the National
Institutes of Health hasn't yet decided whether this stricture applies
to stem cells.

While ethicists argue among themselves, and Congress holds hearings,
Richard Pikunis, and more than a million Americans, old and young,
slowly turn into stone.

So Pikunis follows the work of the Parkinson's Action Network (PAN),
which is fighting for increased federal funding of Parkinson's research.
This could include both stem cell research and other discoveries in
neural growth.

The Udall Parkinson's Research Act, passed in 1997, aimed to provide
$100 million for Parkinson's-focused research, but so far, says Michael
Claeys of PAN, neither the NIH nor Congress has fulfilled this promise.

That doesn't stop Pikunis from believing in a future. He has finished
law school and taken the bar. His son is a year old; another child is on
the way. He cannot control politics any more than his body. He does not
have answers to ethical questions. All he knows is that he loves his
wife and child, and he hopes that, in a few years, he'll be able to
throw his son a football. The FBI has his application, and he waits to
hear, working the customer service counter at Shop Rite. Hoping to catch
the bad guys from a desk, if no longer on foot. And hoping for funding,
ethical clarity, and the luck of the tortoise, before time locks up his
body for good.