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.
The call brought back the anger, hate and fear that Alzheimer's had triggered for much of his early life, haunted by the memory of his mother, huddled mute in her rocker. He left Oklahoma before she died, traversing the Midwest and West as a construction worker, railroad journeyman pipe fitter and union activist before ending up in Oregon as an unemployment counselor for a community services group.
But it was a late 1980s family reunion that started to solve the mystery and end the silence. A doctor from Seattle was there, a neurologist studying the genetics of Alzheimer's. As Thomas Bird sat listening to the relatives talk about their history, a small detail spurred a memory.
The extended family's forebears had immigrated from the Volga region of southern Russia, but they were Germans by heritage and described themselves as Volga Germans. Bird recalled another Alzheimer's-decimated family in Seattle that had a similar background.
In 1995, he and colleagues found the link between the families: a rare genetic variation on the first chromosome that damages the production or function of a critical protein in the brain. It results in the disease's characteristic plaques and tangles, which ultimately destroy nerve cells and shut down the brain's vital circuitry.
A child whose parent has the variation has a 50 percent chance of inheriting it; if that happens, the chance of developing dementia is virtually 100 percent. Bird, a professor at the University of Washington and the Veterans Affairs Medical Center in Seattle, has tracked the gene in more than a dozen severely affected families across the United States. In each, ancestors had come from the tiny Volga German villages of Walter and Frank.
Maybe one day the discovery will help unlock a bigger window on Alzheimer's and lead to a cure. That's what Bird likes to think. Jackson, too, if only for his daughter's sake. It will be too late for him.
In 1999, he traveled to Seattle for genetic testing. He had hoped to return to be able to tell Rachel she had nothing to fear. "It stops with me," he had wanted to say. Instead, he got the worst news. Three years later, things started changing. He was 48. He had bargained for more time.'Shrinking Into Myself'
The past 18 months have been a whirlwind of advocacy. Town hall forums in Oakland and Los Angeles, meetings in Chicago and Washington. Jackson has attended them all, despite the toll that travel takes on his energy and focus. He recently organized a support group for folks like himself where he lives. With gentle humor, he hands out a tan-colored business card.
"Ask me about . . . Alzheimer's disease!" it says. "Let's talk!"
His family supports his involvement. His "care partner" -- his former wife, Marianne Gardner, who invited him to move back home as his condition started to slip -- says activism provides him with purpose and control. His daughter, named for her grandmother, feels a mix of emotions, from pride to fear. The unknown lies ahead for both of them; she has not decided whether to undergo genetic testing. "I think I'm in denial," she said recently.
Looking back, Jackson says he can't believe he didn't recognize his own signs. He was falling down every morning as he tried to get out of bed. Forgetting meetings. And words began disappearing on their way out of his mouth. He wasn't quite sure what he would suddenly hear himself say.
Then one day, he arrived at the office wearing a black shoe and a brown shoe. His co-workers thought it was funny. His boss was not amused. She sent him home to change. He came back wearing the other pair, just as mismatched.
Within weeks, he was put on notice of potential dismissal. His doctor, alerted to the symptoms, made an on-the-spot diagnosis.
For a while, Jackson maintained a journal. "Sometimes I feel that I am shrinking into myself," he wrote in one entry. "My brain becomes the focus; I lose touch with time and space. I stare at the walls or out the window, seemingly lost in thought. But I am watching or feeling the changes inside my head."
During the past year, such moments have increased. He was at the grocery store one day and kept losing track as he counted out change at the check-out counter. Behind him, he heard an impatient customer insinuate that he was drunk.
Of late, he has taken to posting sticky notes around his house to remind him not to leave burners on or water running. His gardening this spring has progressed, but slowly. The effort of organizing his tools and plantings is considerable, and one afternoon last month he had to sit down "and kind of grieve that thing for a while," he said.
He once thought he would turn to suicide when the balance of his existence finally tipped. Now he is not so sure. In conclusion to his testimony this morning, he plans to tell the Senate committee that he wants to be "an Alzheimer's survivor." He thinks saying that can make a difference.
He also believes:
"I could be in too big a hurry to get to the end and miss grandkids or a medical breakthrough. . . . Right now, I have a good life, even with the bad days."
The Alzheimer's Association shows the progressive nature of the disease in an interactive brain tour athttp://www.alz.org/brain/overview.asp.