Phyllis used to be the restaurant critic for the Washington Post for more than 30(?) years I think.

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.
richmanp@bellatlantic.net

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).

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