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hi all here is a little background on hilary blue and her family i will be posting this in the media-gang section of the PIEnet pages at my wwweb-site janet ------------------ PARKINSON'S CLUES? January 27, 1999 Correspondent Betty Ann Bowser reports on Parkinson's disease and medical efforts to treat the disease that affects 1+ million Americans. A recent study suggests that the degenerative neurological disease may be caused by environmental factors. BETTY ANN BOWSER: When popular television star Michael J. Fox recently announced he had been struggling with Parkinson's Disease for seven years, people were stunned. It is extremely rare for someone Fox's age, 38, to be diagnosed with this degenerative neurological disease, for which there is no cure. 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 Johnny Cash have all acknowledged they also struggle with Parkinson's, which affects over one and a half million Americans. 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. 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. 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. BETTY ANN BOWSER: Today, there was exciting news in the Parkinson's research field. 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. 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. 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 sympto. And there are new drugs that, used in combination with Sinemet, 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 takes Sinemet, 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 taking it, 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 determined she was an unfit mother. 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. 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. 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 and have people looking at me as I drop my food all over the place. 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. DR. PETER MORABITO, Parkinson's Patient: You're looking at me, and I look pretty good. My medication is working, 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. 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. 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. 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. BETTY ANN BOWSER: Morabito is more fortunate than most Parkinson's patients. He is wealthy; he has a huge supportive family -- five children -- nine grandchildren; and he now has Victor. 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. 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. 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. BETTY ANN BOWSER: And actor Michael J. Fox told ABC's Barbara Walters he is optimistic. 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. 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. BETTY ANN BOWSER: Today's announcement of a possible cause may open the door to an entire range of potential environmental causes that, if pinpointed, could someday lead to discovery of a cure. a NewsHour with Jim Lehrer Transcript Copyright 1998 MacNeil-Lehrer Productions. All Rights Reserved. -------------------------------------------------------------- janet paterson 52 now / 41 dx / 37 onset PO Box 171 Almonte Ontario K0A 1A0 Canada a new voice http://www.geocities.com/SoHo/Village/6263/ [log in to unmask]