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http://www.washingtonpost.com/wp-dyn/content/article/2007/03/02/
AR2007030202034.html



40 Years Later, Still No Cure
By Phyllis Richman
Sunday, March 4, 2007; B03



Mamie Lieberman was a dynamo. Born just before the 20th century, she
raised five children in Camden, N.J., scraping by while her husband
bought and sold wholesalers' leftovers and disappeared for long
stretches. It was Mamie who put the family on a stable financial
footing, though not until her children were grown. She was past 50
when she started selling odd lots of shoes to her neighbors. Within a
few years, she had opened a series of seven stores, in New Jersey and
the Washington area -- employing both of her sons and two sons-in-law.

I was Mamie's oldest granddaughter, so my perch was at her side. With
her purse inevitably tucked under her arm like a baguette, Mamie
could sweet-talk a customer into buying another pair, survey every
corner of her store while never letting the cash register out of her
sight and set aside the best shoes for her 15 grandchildren in just
the right sizes -- or close enough that a wad of tissue or thinner
socks would make them wearable.

But she wasn't a shoe mogul for long. By the time she was 70, she
almost never left the house. She couldn't dress herself. She spent
her days sitting on the sofa, her face expressionless and nothing
moving but her hands, which trembled constantly. She had Parkinson's.

I have it, too. When the disease was diagnosed seven years ago,
images of my immobilized grandmother filled my mind. But she had the
illness 40 years ago, before polio was wiped out, when tuberculosis
was still a common worry, and malaria was just yielding to DDT (which
was still considered a great help to society). Medicine was far
different in Grandma's day. I have an arsenal of medications to
control my symptoms.

But one thing hasn't changed. Unlike polio, TB and malaria,
Parkinson's still can't be prevented or cured. Forty years ago,
patients were told that a cure was probably a decade away. I heard
the same hopeful estimate seven years ago, and I hear it today. But
unless something happens soon to speed up the search for new
treatments -- more aggressive federal funding of stem-cell and other
scientific research, for instance, and a more streamlined approval
process for new drugs -- then my ultimate fate will be no different
than it would have been in 1960.

My disease did not start like Mamie's. My astute internist first sent
me to a neurologist because of my handwriting. It had always been
small and tight, but what concerned him was that it was getting
worse. Micrographia, it turns out, is a common symptom of
Parkinson's. I had almost no tremor -- the symptom that most people
associate with the disease -- but as I read about the disease, I
realized I had a lot of symptoms that I'd never considered more than
unrelated quirks. I had trouble getting up from a chair, getting out
of bed and even turning in bed. My voice had grown softer, and I was
increasingly clumsy: I tended to trip and fall so often that my knees
were perpetually scraped. Putting change in my wallet was awkward and
slow; at supermarkets and pharmacies, I could feel the impatience of
shoppers behind me.

Fortunately for my job as a restaurant critic, the disease hadn't
robbed me of my sense of smell, as it does many people. But I was
beginning to look less than respectable when I tried to eat spaghetti
or use chopsticks. After taking notes during interviews, I had to
rush home and immediately try to transcribe them, sometimes needing a
magnifying glass. And then there were the days when I nearly fell
asleep at lunch with my face in my mousse. Driving terrified me.

I devoured the Web sites of a dozen Parkinson's organizations and
signed on to chat lines and e-mail group lists. First I sought an
understanding of the disease and its treatments. Parkinson's
primarily affects a part of the brain called the substantia nigra,
and by the time it is diagnosed, the disease has killed about 80
percent of those cells. They supply the brain with dopamine, the
chemical messenger responsible for directing and coordinating
movement, including autonomic functions such as sweating and
swallowing. In early Parkinson's, a person doesn't typically swing
her arms when walking, at least on the affected side (eventually both
sides become affected). Walking itself becomes erratic. In advanced
stages, Parkinson's causes freezing -- as if you're glued to the
ground -- and slow and halting steps, or sometimes uncontrolled
running as if you're going downhill with no brakes. Because I am at
an early stage, I can walk well for half a block (on a good day), and
farther with a cane, which also keeps me from falling. My situation
is complicated by an intermittent back problem (Parkinson's doesn't
prevent you from experiencing the other health challenges associated
with growing older).

As my body has taught me, the really knotty part of this disease is
its unpredictability. The day-to-day symptoms are as variable as
Washington's weather, and the progress of the disease has no
predictable pace. I've met people who've had it for 34 years and are
still living independently. Others, who have had it for just a few
years, need medication every couple of hours, and some already feel
their minds becoming as undependable as their tremulous hands.

I take pills -- one to seven of them four times a day -- to the tune
of $12,500 worth a year, not counting vitamins, blood-pressure
medication and such. As I inevitably worsen, I'll be taking more
pills and more kinds, more often, until I'm on what looks like a
newborn's feeding schedule.

At some point, the medication will create its own problems. The
dopamine pills that unlock my rigid body every day often cause
dyskinesias (jerky, writhing and uncontrollable movements), and their
effectiveness will wane as I desperately await the next dose.
Parkinson's medications commonly cause sleeplessness or sleepiness,
weight gain or loss, hallucinations and compulsive behaviors
including, for some men (I know this one is hard to believe),
uncontrollable gambling. Twenty to 40 percent of us can expect to
become demented. As though this weren't depressing enough, among the
typical early symptoms that lead to diagnosis is depression, a
chemical effect of the disease that can manifest itself at any stage.
More and more I realize that medical advances are making my early
stages easier than Grandma's were, but without some quick
breakthroughs my fate is going to wind up identical to hers.

More than 1 million Americans share this dismal future with me, and
40,000 to 60,000 more join us each year. Not all are senior citizens;
though the average age of onset is 57, 15 percent of people with
Parkinson's (PWPs, we call ourselves) receive the diagnosis before
age 50, some as young as 18.

A million doesn't put Parkinson's at the top of the disease hit
parade. Nevertheless, this is an expensive disease, partly because
people live with it for so long. On an individual scale, nursing care
costs can be astronomical, and the newest brain surgery, in which a
kind of Parkinson's pacemaker is implanted, can cost $100,000. On a
national scale, the disease has been estimated to cost $5.6 billion a
year, including treatment, disability pay and lost income. That
figure is expected to climb steeply as baby boomers reach prime
Parkinson's age.

Why have there been so few Parkinson's advancements since my
grandmother's day? That moves us from the world of medicine to the
world of politics, with a detour into the realm of consumerism.

With a mere million sufferers, Parkinson's is not worth the risk for
pharmaceutical companies to sink big money into unexplored territory.
There's a surer profit in developing another variation of a
successful drug than in creating a new kind of drug, for which the
clinical trials are not only apt to be more expensive, but the chance
of failure runs higher and the approval process is likely to take
longer. Thus, among the newest Parkinson's drugs, I can choose
Mirapex or Requip, which serve the same purpose. Presented as a major
accomplishment are levodopa pills that dissolve under the tongue, in
case the patient has no water on hand. Quick-acting injectable drugs,
and delivery by patch rather than by pill-- those are today's
breakthroughs. They are neat tricks, definitely useful, but I'd much
rather be offered a wider range of treatments than a choice of brand
names.

Of course, as a patient, I don't have much say in the matter. Or do
I? If there is one person who will deserve credit when this disease
is eventually cured, it will most likely be my fellow PWP Michael J.
Fox. In seven years -- since just about when my Parkinson's was
diagnosed -- he has raised so much money that, with matching grants
and joint projects, he has directed $90 million worth of Parkinson's
research. His public presence has brought Parkinson's great attention
and a sympathetic response.

Fox also has been a charismatic representative of "patient power," a
growing factor in this disease and the reason I am going public now.
Parkinson's patients have developed Web sites, such as http://
www.pdpipeline.org, that track clinical trials and drugs in the
pipeline. Patients have been significant players in conferences, have
spoken out about and to drug companies, and have rounded up subjects
for clinical trials. They have been increasingly effective as
lobbyists; during the annual legislative forum of the Parkinson's
Action Network in early February, PWPs fanned out for 250 meetings
with their states' Senate and congressional staffs in one day. At the
evening reception it was announced that the Parkinson's caucus, which
last year numbered about 80 members, had that day alone received more
than 80 calls from legislators seeking to join, doubling its size.

The next frontier for Parkinson's is political. Private enterprise
can't afford the expensive next steps, so promising drugs wait years
to be tested. Nor can the public coordinate progress the way a
government body can. Research is shooting off in myriad directions
and someone should make sure that the branches are in communication.
What is too costly for private enterprise can turn out to be action
the government can't afford not to take.

Politics is particularly obvious in the issue of stem cells. By now,
embryonic stem cells -- the thousands of leftovers from in vitro
fertilization -- have become merely a symbol. It's not that they are
so sacred that they are being cared for and protected; rather, they
are defrosted and disposed of. Medical waste has more respect than
sick people, for whom stem cell research could prove promising for
many debilitating diseases if it had sufficient government funding.
This is not a matter of preserving the life of cells, but of
preferring to consign them to the dump rather than the test tube.

To limit federally funded research to adult stem cells is not a
viable solution. The search for a cure requires both. Story Landis,
director of the National Institute of Neurological Disorders and
Stroke, was unequivocal when questioned in a Senate hearing recently
about how the federal policy on stem-cell research is affecting
medical research. "We are missing out on possible breakthroughs," she
said. The ability to work on newly derived stem-cell colonies,
currently precluded from federal funding, "would be incredibly
important."

On Jan. 11, which would have been the 95th birthday of Mamie's eldest
daughter (my mother), the House voted 273 to 174 to expand embryonic
stem-cell research. It wasn't enough to override a presidential veto,
but it was 18 votes more than identical legislation won last year.
The Senate vote on stem-cell research is expected in the next few
weeks. Feb. 28 was Mamie Lieberman's birthday. She was a gentle,
patient woman, but fiercely protective of her children and
grandchildren. I know just the right present for her.

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Phyllis Richman, a freelance writer, is former restaurant critic for
The Washington Post and the author of three culinary mysteries,
including "The Butter Did It" (HarperCollins).





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