http://www.timesunion.com By MICHAEL LOPEZ, Staff writer First published: Thursday, November 30, 2000 Joining hands against Huntington's at Alice's Restaurant Guthrie Center hosts a communion of thanksgiving for those touched by devastating disease HOUSATONIC, Mass. -- In a church made famous by singer Arlo Guthrie's spirited take on Thanksgiving, people whose lives are touched by Huntington's disease gathered in a powerful testament to the despair, hope and science inspired by this inherited degenerative disorder. At Monday's Thanksgiving, there were brothers John and George Knauer. John Knauer, whose reason and mobility have been robbed by Huntington's, is a Vietnam-era veteran whose youthful passion for the West led him to hitchhike to Texas. Still retaining glimmers of his happy-go-lucky personality, John repeated the phrases "bad boy'' and "more fun'' as his healthy brother lovingly fed him. The Knauers sat next to Albany scientists Anne Messer and Donald Higgins, whose research focuses on slowing the disease's progression. Across the aisle was Dr. Marcy McDonald, part of a research team that isolated the defective gene. And, of course, there was Arlo Guthrie, whose famous father, Woody, died of the disease in 1967. Guthrie sounded a hopeful note about the meaning of family, saying of his father's illness, "Yeah, it was tough, but I wouldn't trade it for anything. I'm so thankful, not only to be here with you, but to be in a family like mine.'' Monday's Thanksgiving, giving scientists researching the disease the rare chance to meet the people affected by it, was hosted by the Laurel Lake Center for Health and Rehabilitation. The center, in Lee, Mass., last year launched the nearest regional facility that specifically cares for people with Huntington's. More than 100 people milled about the former church that is now The Guthrie Center, a community and performing arts organization in Housatonic, near Great Barrington. Monday's dinner unfolded in the Gothic sanctuary that inspired "Alice's Restaurant,'' Arlo Guthrie's send-up of small-town life, which delivered, in the 1960s, a larger message about personal freedom and war protest. When Guthrie sang it on Monday, the audience responded resoundingly by joining in on the refrain, "You can get anything you want at Alice's Restaurant.'' As one caregiver said, Guthrie has lent a name to the disease, but the event, intended to thank researchers for their work, also gave considerable attention to Huntington's. The neurological disease usually begins when people are in their prime, from their 30s to 50s. At onset, people may show mood swings or clumsiness, but over 15 to 20 years, their ability to walk, talk, think and reason deteriorates. Death usually results from complications such as choking or heart failure. Compared with a generation ago, when the Knauers' mother was institutionalized for want of treatment, research and care have advanced by light-years. In 1993, a national team identified the gene that causes the disease, leading to an available test -- and a difficult decision for people who, absent a cure, must decide whether they wish to know if they carry the gene. A consortium of 50 clinical centers, including Albany Medical College, now is studying up to 1,000 people to follow the development of the disease to define when symptoms first appear. Currently, medications help control involuntary movements and emotional problems associated with Huntington's. At Laurel Lake, residents receive physical and speech therapy, as well as counseling to treat physical and mental impairments. The study will help physicians best treat the disease at its onset, said Higgins, Albany Medical College associate professor of neurology. Higgins' lab and clinical work focus on ways to slow Huntington's progression. Messer, director of the molecular genetics program at the Wadsworth Center in the state Department of Health, has been researching Huntington's and other neuro-degenerative diseases for more than 25 years. Her latest research entails engineering antibodies against the abnormal Huntington's Disease protein responsible for nerve cell damage. Higgins, who is collaborating with Messer, believes the discovery of the gene has led to a greater openness among affected families. Among them are the Knauers. Their mother, grandmother and aunt all had Huntington's, and now, George Knauer, a 51-year-old plumber from Coxsackie, cares for two brothers, John, 53, and Robert, 48, who have the disease. Huntington's, simply, rended his family. His mother was institutionalized and the children were raised apart. Both brothers have been arrested, presumed to be drunk in public when they were showing symptoms of the disease. During the holidays, George Knauer lives a 12-hour day, visiting John at Laurel in Massachusetts and Robert at a group home in Middletown, Orange County. John Knauer began showing signs of the disease at about age 35 in the mid-1980s. At Monday's dinner, George Knauer spoke a bit about his brother's life before that. As platters of turkey and bowls of stuffing rolled out of the back, makeshift kitchen, George reminded John, "Remember when you used to be a cook in a diner. You were a real good cook,'' then, turning to others, he said, "but if you ask him his age ...'' Though George Knauer remains asymptomatic, the disease changed his life in other ways. Knauer chose not to have children and divorced because of the divisive question. "When I realized that John had it, and found out about my mother and aunt, I did not want to take the chance because of it.'' He also has opted not to take the blood test that would give him the absolute answer about his own health. "The general onset is in the early 30s. I don't know if I am past it. Because I have to take care of these two -- it scares (me) more to know.'' Guthrie himself has chosen not to be tested, nor, he said, have his four grown children. For him, the decision was not difficult. Speaking of his loving parents and children, Guthrie, 53, said, "To interrupt that chain because of a chance that something may go wrong -- not even go wrong but be more difficult -- seems crazy to me.'' Guthrie's late mother, Marjorie, founded what is now a leading volunteer agency, the Huntington's Disease Society of America. Pat Dushkewich, of Mount Laurel, N.J., learned that Huntington's Disease was in her husband's family six years ago, and knew definitively when he was tested three years ago. The couple has two sons, 16 and 19. The news has been wracking, and Dushkewich, in despair, had turned to the Internet, linking with people like Marsha Miller, a sociologist whose husband also has Huntington's. Seated together at Monday's event, Miller referred to these families as "a real community.'' Dushkewich has worked toward living with this disease in her family. Monday, she nearly upstaged Guthrie with her symbol for an upbeat outlook. She stood and discreetly peeled back the neck of her blouse to show her tattoo: it reads, in bold letters, "CURE HD.'' "I'm going back and having the 'D' added to CURE. I'm going to get that 'D.'

- published August 20, 2000
- Top-right image is Susie
- Lower-left image is of Frank, Susie's deceased Phd Husband

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