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hi all; i think this is the last of the olde news from olde maine! (for now, at least!) janet ---------------------------------------------------------------- Parkinson's symposium offers hope to patients Monday, April 3, 2000 - AUGUSTA - Viola Macomber was diagnosed with Parkinson's disease a year ago and has many questions about her condition. So the 62-year-old retired schoolteacher from New Gloucester went to a symposium Saturday that drew nearly 70 other Mainers seeking information about the disease, in which degeneration of part of the brain can cause shaking limbs, lack of balance, fatigue, and difficulty speaking and walking. Macomber was apprehensive before doctors and others spoke to the group. "I really didn't want to come to see everybody," she said. "I don't know what I expected." Such uneasiness in going to a public meeting is common among Parkinson's sufferers, but by the end of the meeting Macomber was happy she'd come. During one presentation she slipped a reporter a note: "This is incredible! He's describing me right down to my fingers 'locking' that I've blamed on arthritis." Organizers said those with Parkinson's have to do more than just meet with a doctor. This month, they're working to improve awareness of the disease, its treatments and available support groups. Symposium organizer Karen Bardo, who has the disease and serves as vice president of the Maine Parkinson Society, said those with Parkinson's benefit from sharing information. "It's very important to know what all your options are and to work with your doctor," Bardo said. Two experts who spoke at the symposium gave a detailed description of the disease, as well as the medical and surgical treatments available to minimize symptoms. Dr. Bernard P. Vigna, a Bath-based neurologist, discussed drug therapies, while Dr. David Robert, a neurosurgeon at Dartmouth-Hitchcock Medical Center in Hanover, N.H., talked about the evolution of surgical intervention. Vigna said many effective treatments for Parkinson's date back to the early 20th century, but over the last 12 years the options have tripled. All of the treatments, however, manage the symptoms without addressing the root cause of the disease, which remains unknown, he said. Many of the drugs - including Levodopa, the mainstay of treatment - work to build dopamine levels in the brain. Brain scans show that patients with Parkinson's have far less dopamine deep in the brain than those who don't have the disease. Much of the current pharmaceutical research is aimed at decreasing the brain's exposure to toxic substances that are the byproduct of the breakdown of drugs that work to increase dopamine levels, he said. Medication and lifestyle changes can help control some of the symptoms of Parkinson's. But for some, surgery is the next step in trying to control shaking and other symptoms. The success of some surgical treatments gained nationwide attention about 10 years ago after an academic paper was widely reported by the media, said Roberts. That brought new awareness of the disease that afflicts 1.5 million people in the United States. But many reports were misleading, he said. Some reports showed patients jumping from airplanes or playing soccer the day after surgery, he said. There was little mention of the risks: at that time, about 18 percent of surgeries resulted in complications, according to Roberts. Those risks are greatly reduced today. Newer imaging technology has decreased the chance that surgery will miss the tiny areas intended to be operated upon, he said. Now, just 1 or 2 percent of cases result in complications. The main surgical options are pallidotomy and thalamotomy with a new treatment called "deep brain stimulation" on the near horizon. Pallidotomy and thalamotomy are called upon depending on a patient's symptoms. The procedures, which selectively destroy tissue, are done on different parts of the brain. The head is placed in a "stereotactic ring"' to help guide surgeons. After magnetic resonance imaging or a computerized tomography scan, a hole is drilled in the skull through which a probe the diameter of lead in a pencil is inserted into the brain. The probe parts the tissue without harming it, Roberts said, and the probe's path is usually undetectable later. Doctors not only use the brain scans to position the probe but also look for clues from the patient, who remains conscious during the procedure. If the probe is too close to visual pathways in the brain, for instance, doctors will notice clues from the patient, he said. Once appropriately positioned, a radio frequency is used to destroy a pea-sized area of brain tissue. In a majority of cases surgery results in significant improvement in symptoms. A new type of surgical treatment, deep-brain stimulation, may offer doctors a way to achieve the same results without permanently destroying a part of the brain. In this procedure, which has been used in Europe for years and is now before the Food and Drug Administration, doctors use the same surgical techniques to install a radio transmitter in the part of the brain they want to disrupt, Roberts said. "When you stimulate the area, you cause it not to function the same as if it's destroyed," Roberts said. But when the electronics are shut off, it reverses whatever you've caused, he said. The transmitter is attached by a cable that runs under the skin down behind the ear, along the neck and to a battery located near the collarbone. The battery outline would be visible on some patients. The battery has a life span of about five years and replacing it isn't overly complicated, Roberts said. But there are some risks, including a wire breaking, that could require additional surgery. "I'm sure it's going to be very exciting over the next decade as further adjustments of this comes along," he said. ... By Michael O'D. Moore, Of the Bangor NEWS Staff 2000 Bangor Daily News. All rights reserved. http://www.bangornews.com/cgi-bin/article.cfm?storynumber=1012 ---------------------------------------------------------------- The Maine Parkinson Society: http://www.geocities.com/maineparkinsonsociety/ American Parkinson's Disease Association: http://www.apdaparkinson.com/ janet paterson, an akinetic rigid subtype parkie 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada EMAIL: [log in to unmask] URL: http://www.geocities.com/janet313/