It looks like the link to this article doesn't work anymore. (It did 
this morning) I'm posting the full text for those who didn't get the 
chance to read it. Too good an article to miss!
Linda

FROM: Washington Post
40 Years Later, Still No Cure
By Phyllis Richman
Sunday, March 4, 2007; Page 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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