Man With Alzheimer's Fights 'Family Disease'

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Alzheimers Patients Speak Out

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.

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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.