Man With Alzheimer's Fights 'Family Disease'

At a town hall event held Monday in D.C. by the Alzheimer's Association, people in the early stages of the disease spoke about what living with Alzheimer's and Dementia is really like.Video by Jacqueline Refo & Anna Uhls/washingtonpost.comRelated Story: 'Man With Alzheimer's Fights 'Family Disease''
By Susan Levine
Washington Post Staff Writer
Wednesday, May 14, 2008

When Chuck Jackson takes his seat this morning before a U.S. Senate committee, he'll not lack for names or faces as he talks about the devastation that a disease called Alzheimer's has visited upon his family. His grandfather John. A dozen aunts and uncles. His mother, Rachel; a brother, Danny. Plus every year, a growing list of cousins.

For decades, he'll say, most of them knew it only as the "family disease." It struck them almost always at young ages. Jackson's mother was 44 when she said, "I'm not right in the head anymore," and her son, barely into his teens, became the default caregiver on their small farm in the Oklahoma Panhandle. He will tell the Special Committee on Aging about the sometimes bizarre symptoms, the inexorable losses.

He will also tell the panel how Alzheimer's overshadows his own life. His illness was diagnosed four years ago, when he was 50. His generation is at least the fifth to bear such a burden. "Enough generations," he said.

Jackson is speaking out as few of his relatives ever dared to do. He is part of a nascent self-advocacy movement in Washington and other cities, an assertion of courage, even defiance, given the stigma attached to dementia. For most people, Alzheimer's is a synonym for fear and despair.

"I'm not going down without a fight," said Jackson, who often pleads for more money for research and treatment. "It's time to find, if not a cure, at least better medicine so people will live through this better."

His voice carries an urgency. This week's trip to Washington is his third in three years, and he expects it to be his last because of the disease's continued trespass of his brain. Back home in Oregon, there are more and more mornings when it saps his concentration, steals his words, throws him off balance. Mornings when his head is crowded with a grainy, rolling static, like a bad picture on an old black-and-white TV.

"It's stealing my time," he said.

The Lineage of a Disease

More than 10,000 people in the Washington region have Alzheimer's, and as many as 5 million nationwide. There are people like Chuck Jackson everywhere, men and women confronting the disease during years they had anticipated being at the top of their lives and careers. Indeed, one of the first people to speak as the Alzheimer's Association opened its annual public policy forum in Washington on Monday was a Falls Church woman. Patty Smith, a former bank consultant, was diagnosed at 51.

The association, which was founded by a business executive whose wife's symptoms had surfaced in her 40s, estimates that 500,000 Americans fall into the pre-65 "early onset" category. In the past three years, the group has tried to help them find their voice and address the problems they face.

Most are still working when their confusion begins; their children haven't finished college or even high school. Many have trouble getting an accurate diagnosis, and once they do, they find that many programs are geared mainly toward older people. Some retreat in denial or embarrassment. Others are like Jackson and Smith. For as long as they can, they insist they will be heard.

"They're doing a huge service," said Stephen McConnell, vice president of the national association, which this year seated its first board member with dementia. "Their importance is disproportionate to their numbers, because people see them and say, 'That's not supposed to happen.' . . . People look at them and say, 'That could be me.' "

The first time Jackson contacted his local chapter for help, the person on the other end told him that he could only come in with a caregiver. As if his diagnosis rendered him incapable, he said.

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