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| TESTIFYING FOR PARKINSON'S | |
 September 28, 1999 
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Actor Michael J. Fox urged Congress today to devote more money to Parkinson's research. Correspondent Betty Ann Bowser reports on the disease that affects 1½ million Americans. |
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MARGARET WARNER: In Washington this morning a Senate panel heard witnesses call for greater funding for research on Parkinson's Disease. Among the speakers was the actor Michael J. Fox, who suffers from it. Here's some of what he had to say.
When I did share my story, the response was MARGARET WARNER: For more, we reprise Betty Ann Bowser's report earlier this year on Michael J. Fox and others with Parkinson's. Here's our encore look.
MUHAMMAD ALI: I've got more experience, I'm a world champion; I'm ranked as the greatest champion of all times. BETTY ANN BOWSER: And who could forget seeing in the once feisty Muhammad Ali showing the outward symptoms of advanced Parkinson's -- the unsteady walk, the uncontrollable shaking? Dr. Allan Ropper is chairman of the neurology department at Tufts University in Boston. DR. ALLAN ROPPER, Tufts University: The Parkinson's Disease is a degeneration or loss of very particular cells deep in the brain that leads to a reduction in the amount of dopamine, which is a chemical required for cells to signal to each other. BETTY ANN BOWSER: When dopamine is not produced in enough quantity, cells cannot signal each other properly. Patients develop muscle tremor, slowness or rigidity of movement, and instability in walking. Generally, Parkinson's patients deteriorate over a long period of time, perhaps ten to twenty years, and, in a weakened condition, many die from complications. But Dr. Ropper, who is Michael J. Fox's doctor, says that there is cause for optimism.
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BETTY ANN BOWSER: A study published in the Journal of the American Medical Association said the majority of cases of Parkinson's Disease in people over the age of 50 seemed to be caused by exposure to unknown chemicals in the environment. But the researchers say a defective gene may still be the cause in less than 10 percent of all cases, in those patients under the age of 50.
Recently, the F.D.A. approved Activa tremor control therapy. A wire
is implanted deep in the brain connected to a pulse generator, similar
to a heart pacemaker, and whenever a tremor begins, patients can activate
a pulse to alleviate its symptoms. Hilary Blue takes Sinamet, but like most Parkinson's patients, its window of effectiveness becomes shorter and shorter over time. She now has to take it every 90 minutes, but shortly after she does, she is able to play the piano. Blue is a widow, a mother of three teenagers. Like thousands of Parkinson's patients in more advanced stages of the disease, her only means of support is public assistance, and at one point, because she was so disabled, the county where she lives determined she was an unfit mother.
BETTY ANN BOWSER: Do you think that you were incapable of caring for them? HILARY BLUE: No. I think I had problems, and I think I needed help, but I don't think that taking them away was the best thing. BETTY ANN BOWSER: Except for an exercise class for those with advanced stages of Parkinson's, Blue is mostly homebound.
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BETTY ANN BOWSER: Peter Morabito, who has had Parkinson's for over ten years, also has found drugs to be less and less effective as time goes on.
BETTY ANN BOWSER: When we first met Morabito in the summer of 1997, he was thrilled with the birth of a new grandchild, and still getting around pretty well with a cane, although he had had to give up his career as a dentist.
BETTY ANN BOWSER: Back then, Morabito was optimistic about a procedure he'd had called a palliodotomy. A tiny electrical probe was placed in the brain, which destroys a small number of brain cells that misfunction and cause rigidity. And it has helped him, but since the summer of 1997, his illness has progressed. DR. PETER MORABITO: I can't play tennis anymore. I can't jog. I can't run. I find it very difficult to walk. I've had some very embarrassing situations with a fall -- many falls. I was falling forty to fifty times a day, and I had injured my hip pretty badly, so I've had a hip replacement since I've seen you.
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DR. PETER MORABITO: That's a good boy. Victor's a good doggie. BETTY ANN BOWSER: Victor is only one of eight Independence Dogs in the world trained to work with Parkinson's patients. BETTY ANN BOWSER: What difference has Victor made for you? DR. PETER MORABITO: Well, Victor has brightened my life quite a bit. He helps me. He prevents my falling -- tumbling over things. He's very cautious of how I move my legs. He watches my feet all the time -- and besides that, he gives me a great deal of comfort. BETTY ANN BOWSER: But Morabito does still fall, and when he does, Victor is able to help him up. DR. PETER MORABITO: He supports me when I get up, huh Victor? Brace. Brace. I can put a truck on his back now and do this command. I can put all my weight on him. |
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| A disease that kills, eventually. | ||||||||
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BETTY ANN BOWSER: Since developing Parkinson's, the 57-year-old retired dentist has devoted himself to raising money for research and finding a cure.
BETTY ANN BOWSER: And actor Michael J. Fox told ABC's Barbara Walters he is optimistic.
BARBARA WALTERS: You think by -- you're 37 now, by the time you're 50 there'll be a cure? MICHAEL J. FOX: I know I won't have this. I will not have it.
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MICHAEL
J. FOX, Actor: When I first spoke publicly about my eight years of experience
as a person with Parkinson's, many were surprised, in part because of
my age, although 30 percent of all Parkinson's patients are under 50,
20 percent are under 40 and that number is growing. I had hidden my
symptoms and struggles very well through increasing amounts of medication,
through surgery and by employing the hundreds of little tricks and techniques
a person with Parkinson's learns to mask his or her condition for as
long as possible. While the changes in my life were profound and progressive,
I kept them to myself for a number of reasons: fear, denial for sure,
but I also felt that it was important for me to quietly just soldier
on. 
overwhelming,
humbling, and deeply inspiring. I heard from thousands of Americans
affected by Parkinson's, writing and calling to offer encouragement
and to tell me of their experience. They spoke of pain, frustration,
fear and hope -- always hope. What I understood very clearly is that
the time for quietly soldiering on is through. The war against Parkinson's
is a winnable war, and I have resolved to play a role in that victory.
BETTY
ANN BOWSER: Fox is the latest in a series of famous people who have
gone public. Attorney General Janet Reno, the pope, evangelist Billy
Graham, and country singer Johnny Cash have all acknowledged they also
struggle with Parkinson's, which affects over one and a half million
Americans. 
DR.
ALLAN ROPPER: While there's no cure for Parkinson's, the rate of progression
is highly variable, and it's important to point out that a third or
more of patients -- even youthful patients -- who begin with tremor
and a little bit of rigidity are not much worse ten and fifteen years
down the line. 
While
research into a cause continues, there are procedures that can give
patients relief. Michael J. Fox, like this patient, had a thalomotomy
last year. Doctors drilled a tiny hole in his head, and through computer
mapping, inserted a probe that destroyed a minute number of nerve cells
that caused tremors on one side of the body.
And
there are new drugs that, used in combination with Sinamet, the primary
drug used to treat 80 percent of all Parkinson's patients, seem to alleviate
some of the symptoms for longer periods of time, and increase the quality
of life for some patients for years.
HILARY
BLUE: My children were taken away from me. I didn't willingly give them
up. Other people decided that I was incapable of caring for them.
HILARY
BLUE: I tend to stay at home. One of the reasons is I can't go out because
I physically cannot get to places. I can't drive anymore. And I am dependent
on other people to take me out. And them sometimes it's just easier
to stay home and have food brought in than to go out to restaurants
and face people looking at me as I drop my food all over the place.
DR.
PETER MORABITO, Parkinson's Patient: You're looking at me, and I look
pretty good. My medication is working now, and I'm at peak, but there
are times when I'm in great distress -- I can't write; I can't drive;
I can't do anything; I can hardly walk; I fall; my knees are all banged
up. 
DR.
PETER MORABITO: Because of the tremor I had in my hands, it just wasn't
safe to work anymore. So when you take away somebody's ability to earn
money at my age, it affects you mentally and physically. 
DR.
PETER MORABITO: It's a killer disease. It gets you eventually. That's
why we have to find a cure. And it attacks so many people. I mean, everybody
knows somebody who has it, somebody's mother, somebody's aunt. So we
have to get after it. 
MICHAEL
J. FOX: I really feel that within the next ten years they're going to
find a way to flip a switch and this is gone. Maybe one of the reasons
I'm more optimistic and happier and relaxed than people would expect
me to be is I won't see 50 with this. I will see 50 but I will not have
this. 
