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

Firstly, your article mentions that the author is a restaurant critic and her smell has not been affected. No effect on the olfactory system is common to those with genetic mutations. Since there is also a history in the family of Parkinson's disease, the author more than likely may have a genetic form of Parkinson's Disease. The Author might consider going to Athena Diagnostics and having a Parkin gene test completed. The author could be a helpful candidate in the area of genetic research. By having the test, if the author proves to have a mutation, he/she could be helpful by providing researchers more gene information to discover a cure for not only patients with a genetic cause, but also those with idiopathic Parkinson's. Parkinson's disease is not caused by genetics, but if researchers can discover a commonality between exposure of a toxin or commonality of stress, for those with genetic mutations, it will also present a strong piece of evidence of what causes idiopathic Parkinson's disease.

To date, evidence suggests the best treatment approach to helping those with genetic mutations is DBS surgery, which will help by decreasing the patient's need for meds.

The three diseases the author lists in her article, Tuberculocus, Polio and malaria are all caused by parasites. Either the author is stating that the the cure for Parkinson's is as simple as discovering a parasite, or she is comparing apples and oranges. The brain's blood barrier would be pretty tough to penetrate for a parasite. Today's scientific society is advanced enough to have picked up a parasite if the answer was that simple. It is precisely the complexity of the brain and the blood brain barrier that a cure has not yet been developed. Yes, I was told 15 years ago that a cure would be found in 5 years. I was told the cure would be found through stem cell research. How many years and how many billions of dollars do scientists need to continue to insist researching stem cells is the answer to curing Parkinson's disease?

Just curious, is there a relationship between the author's grandmother and Dr. Lieberman or is the same last name just coincidence?

The tissue used from couples who have chosen to use invitro fertilization is the responsibility of the parents. More and more couples are choosing to try this route because they want a family or the wife is a professional who wants to put off childbirth until her late 30's or 40's, after her career is established. If a couple is unable to bear their own children, the embryos are provided to give them an opportunity to fulfill their need to be parents.

The children born iare a gift from God to teach us how to nourish, love, and give fully of ourselves until we have taught the child to be self sufficient . In turn, the children, if properly nourished by their parents, will also have children and the skills learned to help their parents when they are elderly and need help. Children were never meant to be a right for every married couple and certainly not frozen as embryo's so the parent's may choose to have them implanted when it is convenient for the parent's to raise them, or to implant in a surrogate mother. Because the technology is available, does it mean it is correct to use it?

Children are left home alone after school while both parents go to work. Children are fatherless or motherless, forcing mothers or fathers to work with no energy to raise the children with the love they need. We were the me generation. The current generation are the rights generation. Fortunately, some of the current generation are more intelligent than our generation and see the problems that are a result of putting "me" first and are working to counteract our actions.

No one has the [B]right[B] to bear children, it is a gift. Children are not material objects that we have a right to own when it is convenient for us; Nor are they born to meet our needs. They are born for us to serve. They are human beings, who when born are totally helpless and dependent on their parents for nurturing. Young girls are having children in High School before they are prepared themselves to raise children not because they want the child: they want a child because they lack the love they never received themselves as children. Seems a heavy burdon to place on a helpless infant.

When society accepted the premise that children are a right, rather than a gift, and accepted the method of freezing embryo's they opened a Pandora's box. Only a human embryo can grow to be a human person. It is in the genes of the embryo. Now society is willing to go another step down the easy path and choose to demean what it means to be human by denying the human embryo the right to life, because the adult values his life more than the gift of life in the embryo.

If this is not evidence that the devil is a real entity at work in our society, I don't know what is. Man is fallible, and will rationalize what is immoral in society to be moral when he wants it bad enough. Is the answer to man's mistake to continue to meet out needs by benifiting from the mistake or to refuse to participate in the results of the immoral act?

I was repeatedly sexually abused by my father. Would it be right for me to use this fact to abuse my children and blame it on the fact that it was the only way I knew how to be a parent? No, I must hold myself to a higher standard of knowing what is right and what is wrong and change the behaivior. Society, however, would excuse any behaivior I engaged in, ie., had I chosen prostitution, drugs, etc. because I was driven to it by a bad childhood. Society would encourage me to make my father pay for his actions by sending him to jail or fining him in a court settlement.

The devil is hard at work tempting us to believe we are not responsible for either societies actions or our individual acts. Looks to me like he is winning.

Vicky

glad to see it
-rick

I didn't post it for the stem cell part - I liked her story and especially liked the fact that she "gets" the whole picture" about treatment development, including what a patient can contribute.....plus she mentioned us.....lol

It's a recap not an opinion of stem cells, or at least that was what I was thinking.




paula

Agree - it's the author's history with the disease, plus her grandmother's story that makes this riveting. Great post.

This may not be a popular opinion --

If the "devil" is at work here, it's my opinion that "work" involves convincing otherwise well-meaning people that it's a "sin" to use the knowledge we've been given to pursue scientific solutions to the problems that face mankind.

The leftover embryos from in vitro fertilization are destroyed anyway.

Not a single baby has been "saved" by the government's refusal to increase funding for stem cell research.

I don't know if there's a cure to be found in embryonic stem cell research or not. I do know -- beyond a shadow of a doubt -- that if we don't look, we won't find it.

Ms. Richman's article was excellent, and I've written to her to thank her for it.

I will have to assume you read my post Title and not the entire post. The only part of my post you chose to comment on was the stem cell issue. I also started my first post with discussion of suggestions the author could do to learn more about her illness and how she might be able to help the entire Parkinson's community.

I suggested in the next paragraph what most studies have stated about those with the genetic portion of PD and what is considered the most effective treatment today. I did not tell her she should do any of my suggestions, but only attempted to share some of the studies I have read.

I do not agree with the majority of Parkinson's patients that the one of the most important political issues is finding the cure for Parkinson's disease. I wouldn't even consider it one of the top ten. I watch the news at night and see the conditions that the cultures in Africa and the Middle East live in, hear stories of how many Americans are without healthcare, and the poor scores of our American students and how the American education system is suffering in comparison to the education received in other countries. I do not spend my time complaining about my Parkinson's disease and the quality of life I lead. I have educated myself to understand the nature of my disease and accept what today's scientific community is able to offer.

If you think Parkinson's Disease is the most important political issue, I would suggest you spend some time in the inner city schools of some of America's largest cities, where the majority of the students are immigrants who have come to America to escape a life of sub-human conditions. I am fighting a case of pinworm, from spending time at such a school, volunteering to help students learn music, an international language.

I do this on my good days which are getting farther and farther apart. But as long as I can contribute to society I will. And on the days I can't I will be grateful for those who return to me what I have tried to give to others.

Since many of you like poetry on this site, let me remind you of a poem you probably heard in elementary school. It has had a big impact on my life.

Robert Frost (1874–1963). Mountain Interval. 1920.

1. The Road Not Taken


TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth; 5

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same, 10

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back. 15

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Love,
Vicky

Vicky,

Why don't you write to Phyllis Richman and feel her out about how much she knows about genetics. She said it was because of patient involvement that she is "coming out."

Who better than you?

paula

Hi, Vicky.

I did, in fact, read your entire post. I generally do not comment about things that I haven't read in their entirety.

I think Ms. Bachman is doing a WORLD of good by going public. By a public airing of her disease, perhaps someone reading the Post will recognize the symptoms in him or herself and get some care. Call it "lighting a candle" instead of "cursing the darkness." We all fight this thing in our own way. What's right for some may not be right for others.

I'm wondering where in my post you saw me suggesting that PD was the most important political issue.

I do think there's potential in stem cell research. And I also believe that people who want to impose their religious beliefs on others are responsible standing in the way of that potential. This is not directed at you, neither was my previous comment. It's my opinion. That's all it is.

Thank you for caring about the children, and good luck with the pinworm.

Bill

Dear Paula,

As you said in your post, "plus she mentioned us," so I assume she will read the post, and no doubt, since she admits to reading them in the past, would be hard put to have missed the subject in the past.

Who better than me? Just about anyone on this forum. I am known and disregarded on this forum, because of my prolife beliefs. As one poster wrote, "If the "devil" is at work here, it's my opinion that "work" involves convincing otherwise well-meaning people that it's a "sin" to use the knowledge we've been given to pursue scientific solutions to the problems that face mankind." Radioguy. Therefore I must be considered a kook, and everything I am should be disregarded. I know you mean well, Paula, but I tend to be cursed by emotional potshots by persons like above.

How many of the people who posted on this site ever participated in a Parkinson's walkathon, even those with relatives who have Parkinson's disease (discluding caregivers, obviously they are involved because of their carepatient) before their diagnosis? The author admits to waiting 7 years to come out. Now that she is having difficulty working it has become a priority for her. Same for Michael J. Fox, God love him, who abused his subscription drugs, in an effort to keep his illness a secret. It has left him suffering now more than need be. I understand Parkinson's disease will eventually kill me. But I won't let it change me, including my spiritual beliefs.

When I work with the children, and they see me shaking, I explain why. They tend to assume I am afraid and I need to reassure them that I am not to get their full attention. I have the support of the teachers throughout the schools I volunteer at as well as the principals.

Were more of us to allow ourselves to be seen in public places, as volunteers, instead of attending congressional conferences and seeking power, like so many other lobbyists, the American people may be more aware and sympathatic to our problems.

Love,
Vicky