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Parkinson's: There's No Cure, But New Treatments Help Patients Cope April 22, 2003 - PATRICIA GUTHRIE, Staff The Atlanta Journal-Constitution It started in her 50s, just a twitch, just her little finger. "Now I have a whole lot of symptoms," Lyn Frank says, itemizing the characteristics of Parkinson's disease like a grocery list. "Muscle spasm. Slowness of movement, involuntary movement, visual problems. "It's almost every part of my body." Not enough dopamine in her brain is the single source of Frank's problems. Dopamine, a vital chemical enabling people to move normally and smoothly, erodes in Parkinson's patients, although scientists still can't pinpoint exactly why. How to halt the erosion also remains elusive. But advances in drug therapy and improved surgical techniques have made the disease more manageable than other neurological disorders, explains Dr. Mahlon DeLong, chairman of Emory University School of Medicine's department of neurology. Just this month, researchers reported on two new studies--- one from an Emory researcher, Dr. Ray Watts --- showing that experimental treatments involving retinal cells and proteins greatly restored movement in participants. Whether alternative approaches, such as tai chi for movement and herbs for sleep, can help Parkinson's patients is also under study at Emory, funded by a $6.2 million grant from the National Institutes of Health. "When I diagnose a patient, I tell them, 'You've got Parkinson's; you're lucky. You can be treated, and in maybe the next five or 10 years, there'll be even better treatment,' " DeLong says. At least 1 million Americans are estimated to have Parkinson's; up to 50 percent may be undiagnosed. The disorder often occurs after age 50, but early onset is possible. Although the disease affects people differently, those in advanced stages can become too stiff to walk, suffer "freezing spells" and experience confusion, slurred speech and memory difficulties. Tough on its sufferers, Parkinson's also weighs heavy on families. "It's almost like I have Parkinson's. There's just no break," says Sue Young, 44, who's watched her mother's physical abilities deteriorate for the past 16 years. "She's got her mind but her body just won't work." Young, an only child, lives with her parents in Dunwoody, attending to her mother's needs when not in the skies as a Northwest Airlines flight attendant. She's also active with Parkinson's Action Network, a national lobbying group. "You have to accept it and make adjustments in order to live with it," she often tells others. Because of the loss of the brain cells that make dopamine, most treatments aim at restoring the essential link of body and mind. But such drugs lose their effectiveness in time, leaving many patients with just a couple of "on" hours in the day when they are steady enough to write, read, go for a walk, tap away at the keyboards and "not be a Parkinson's patient," as Frank puts it. When Frank's feeling good, the mother of three adult children explores cyberspace, e-mails family and friends, gets out her trowel. Three hundred orchids posed in striking color await her tender touch throughout her Vinings home, where she lives with her husband, Werner. "The fears are when you think you can only go downhill," says Frank, who was diagnosed in 1989. "There's no cure. I have been able to handle these fears of the future by letting [my doctor] worry about that and I concentrate on my hobby, my orchids." Doctors now prescribe more of a "drug cocktail" for Parkinson's patients in hopes of sustaining efficacy. Frank's pill case has 10 sections, each filled with a different medication to help with symptom management. Every two hours, she takes another dose. Among the rainbow of pills are many new classes of drugs found to help with dopamine interaction. The drug levodopa was the first dramatic breakthrough in the treatment of Parkinson's some 40 years ago. It remained the gold standard for decades, even though many patients experienced severe side effects, such as nausea and vomiting. Sinemet, a more recent levodopa-type drug, goes more directly to the brain and causes less gastrointestinal distress. But long-term use of these powerful drugs leads to a side effect that many people mistakenly believe is a symptom of Parkinson's: the wide, erratic swinging of limbs known as dyskinesia. Parkinson's experts often refer to actor Michael J. Fox as an example of this phenomenon, which is caused by treatment, not the disease. Although Fox may seem just a natural hyperactive kind of guy, his body is in constant motion from high doses of levodopa, which mask the telltale tremors and shakes of Parkinson's but cause dyskinesia. Patients experiencing such side effects are possible candidates for two surgeries proved highly effective in stopping uncontrollable movement. One operation, called pallidotomy, uses magnetic imaging and electrodes to destroy affected brain tissue. Another procedure, known as deep-brain stimulation, implants a pacemakerlike device that delivers controlled electrical stimulation to specific points within the brain. "We think of Parkinson's as a circuit disorder of the pathway in the brain," DeLong explains. "It's a circuit that's been hijacked. We have to free up the circuit by interrupting it." Making lesions --- essentially burning the brain tissue causing the misfiring --- is one way to do that. Doctors recognized that 60 years ago, but they didn't know where or how to make the incisions precisely. Questionable techniques --- such as inserting probes in the brain with hot wax --- were tried, resulting in Parkinson's surgery falling out of favor for decades. "Back then, they had no idea what the physiology of the brain was," explains Dr. Jerrold Vitek, who helped pioneer the brain-mapping technique at Emory needed for movement disorder surgery. "It was more kind of a 'poke and hope' approach." Most of the time, Parkinson's strikes people who have no family history of the disease and are blissfully ignorant of it --- until strange things start happening. Like shaking hands that won't stop or a left leg with a mind of its own --- Barbara Forcier's experience two years ago. Working at Rhodes Furniture, the 48-year-old soon couldn't meet her sales quota. "Flapping around is not good if you're in sales," she jokes. Forcier, who now works full time in Emory's department of neurology, still finds relief from low doses of medication for her spasms and fatigue. She knows what could lie ahead, but remains optimistic. "I'm young enough that I see a cure in my lifetime," says Forcier, active with the Atlanta chapter of the American Parkinson Disease Association. Many with the disease can work and live independently because of recent therapeutic advances, she's quick to point out. Some scientists predict a cure for Parkinson's within a decade. "We know a lot more about the brain than we did 30 years ago," says DeLong, sitting in his windowless office brimming with brains. Not real ones, but photos, X-rays and computer models. Mushy three- dimensional cerebral models rest by the doctor's cup of steaming green tea. From one wall smiles Muhammad Ali. The small photo is signed with small, slanted, scrunched-up words --- more evidence of Parkinson's that the prizefighter has publicly challenged for decades, including dramatically lighting Atlanta's Olympic torch in 1996. DeLong says he's witnessed patients from ages 20 to 80 transformed by deep-brain stimulation. Emory's Parkinson's team has completed it on more than 100 individuals. "You can make people with Parkinson's new. You can't do that with Alzheimer's or Huntington's," says DeLong, energetic despite a previous night's 10-hour stint in the operating room. "It's one of the most amazing things in neurology I've witnessed." SOURCE: The Atlanta Journal-Constitution http://www.accessatlanta.com/health/special/parkinsons0422.html http://magazines.ivillage.com/goodhousekeeping/hb/news/article/0,,ajc_ 2003_04_22_E_35293305-0005-Home~ew~xml,00.html * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn