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The Argus, CA Article Last Updated: Tuesday, July 22, 2003 - 3:30:19 AM PST Group seeks advocacy for shaking condition Katharine Hepburn believed to have suffered from neurological disease By Jeanine Benca, STAFF WRITER PLEASANTON -- Among other things, movie legend Katharine Hepburn will be remembered by her voice. The notoriously headstrong actress died last month at age 96. She had "attitude" many say was years ahead of her time -- a trait Hepburn never failed to express with characteristic throatiness. Her wavering voice has been described as sultry, sexy and unique. But members of a local support group say they wish the starlet had gone public during her lifetime with the real reason behind her tremulousness. Hepburn, whose film career spanned six decades, died June 29 at her Connecticut home. With her went a fleeting hope that widespread attention would be paid to her little known neurological disorder, group members say. For the past several years, Sharon Alexander of Pleasanton has been leading a small support group in the Valley for people struggling with "essential tremor." Though 20 times more common than Parkinson's disease, essential tremor disorder is rarely discussed, and is frequently overlooked or misdiagnosed by physicians. "I've had this since I was 15, and I didn't get a diagnosis until I was 30," said the 49-year-old Alexander. "Doctors kept telling me I was nervous. They said I needed to 'calm down.'" Both Parkinson's and essential tremor belong to a family of medical conditions informally described as "shaking" disorders. Patients twitch and tremble involuntarily due to malfunctions in the body's neurological system. But while many of its symptoms resemble Parkinson's, essential tremor is believed to be rooted in different brain mechanisms. Not much is known about its specific causes -- in part because significantly less research has been done on essential tremor than its deadly cousin. Unlike Parkinson's disease, the condition is not fatal. Members of Alexander's group point to disheartening language physicians sometimes use when describing essential tremor. "They call it 'benign.' It's like the one woman wrote in my paper -- 'you don't die from it. You just die of embarrassment,'" Alexander remarked. Recently, Alexander completed her liberal arts undergraduate degree at John F. Kennedy University in Orinda. In March, she finished a research thesis on essential tremor disorder, which includes more than a dozen anonymous accounts contributed by local victims of essential tremor. "Just putting on makeup or trying to sign a check at the bank or posing for a picture -- anything where you have to keep still -- is grueling," Alexander explained. She admits she "drove around for years" without a photo on her driver's license, "never orders soup," and has her hair cut at a salon for people with "special circumstances." Essential tremor -- whose age of onset ranges from early childhood to the 70s and 80s -- is characterized by vertical and/or horizontal shaking of the head, as well as trembling of the voice and hands. While shaking caused by Parkinson's disease usually occurs when a patient is at rest -- becoming milder during movement -- shaking from essential tremor occurs when patients attempt to use their fine motor skills. "I'm convinced every time I move, everyone is watching me," says Carol Sugerman of Danville. The 47-year-old first was diagnosed with essential tremor at age 28. A former nurse, she says she only recently has considered going back to work after a longtime hiatus. "I have a class reunion coming up, and I really want to go to it. But all those people knew me pre-tremor ... It's like there's such a stigma about it." Known for her privacy, Katharine Hepburn never spoke publicly about the trembling she experienced on-screen -- a phenomenon that seemed to worsen as the actress aged. Until recently, most attributed her affliction to Parkinson's disease. Colombia University neurologist Elan Louis, one of the nation's leading researchers of essential tremor disorder, is among a growing number of experts who are convinced Hepburn suffered from the condition. Unlike Parkinson's disease, essential tremor shows strong hereditary linkages, and several of Hepburn's relatives are believed to have shared her disorder. Nearly every member of Alexander's eight-person support group said they also have relatives who "shake." Parkinson's disease patients respond to different medications than those with essential tremor, and many say treatments offered for essential tremor leave a lot to be desired. Ongoing research conducted by Louis and other top neurologists centers on new theories that essential tremor is neurodengerative -- caused by the accelerated death of cells in key parts of the brain. It is estimated as much as 6 percent of the general population and 23 percent of people over 65 could be affected by the disorder. Alexander's support group meets on the second Saturday of each month at the ValleyCare Health Library in Pleasanton. Theirs is the only essential tremor support group in the East Bay, mostly due to patients' embarrassment of social situations and fear of acknowledging their condition, Alexander said. For more information about the essential tremor support group, e-mail [log in to unmask] or dial Valley Care Health Center at (925) 734-3315. "Many people feel it would be too much for them to come and sit here -- even though they'd be with people who have the same thing they have, " one member said. Members said they were disappointed few references were made to Hepburn's shaking in the just-published biography, "Kate Remembered," -- a 20-year collaborative effort between Hepburn and Pulitzer Prize winning biographer Scott A. Berg. During a recent interview on National Public Radio, Berg acknowledged Hepburn had a "history of shaking in her family," that was "not Parkinson's." He said the actress' continued movie career was a sign of her "confidence," and her tremors became an "endearing" part of her. "I wish (Hepburn) could have lent essential tremor the same advocacy Michael J. Fox gave Parkinson's," Alexander said. "People make judgments. They think you're getting upset or you're a drug addict," said Alexander. "If people knew there was a reason why people's heads shake and hands shake they'd be less likely to do that." SOURCE: The Argus, CA http://www.theargusonline.com/Stories/0,1413,83~1971~1525974,00.html * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn