Sunday, May 07, 2006

Right here's where fight against Alzheimer's begins
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Alzheimer's Donation
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Howard Goodman

Richard McNally was a pilot, a fun-loving man with an off-beat sense of humor who flew corporate jets for a living and who'd come home to a household as loud and chaotic as seven children could make it.His life was rich when he retired to Palm Beach Gardens. But after a while, the old Richard McNally disappeared. He was diagnosed with Alzheimer's disease. And over the course of 11 years, he developed great holes where his memory used to be.For a while, the stories were almost funny: Dad would wander into a neighbor's house and help himself to crackers in the kitchen.But then he couldn't drive. And he couldn't be alone.One of his daughters, Patty Doherty, a graphic designer, moved down from Boston with her husband, a chef, to take charge of her father's care."We never wanted to put him in a nursing home," she says. "I had no idea what was in store for us. And still today there's very little help available. The disease never improves. It just deteriorates. And there's no treatment that's effective."Patty and a younger sister thought they could provide their father's hands-on care if they split the duties.But he had become incontinent. He couldn't brush his teeth. One minute he was the person they knew. The next, he was someone they didn't recognize."After a year," Patty says, "we were ready to kill ourselves."The brothers and sisters, most of them living up North, pooled resources and hired 24-hour help. The first year, it was $10 an hour, more on vacations and holidays. Each following year, the hourly wage rose a dollar."It was like a little industry," she says, "managing the caregivers."Insurance didn't cover it. Medicare didn't.But the children had to bear the financial burden. Otherwise, their mother would never leave the house, never play bridge or go to church, never catch a breather.When Doherty heard 21/2 years ago that The Scripps Research Institute was expanding into Florida -- the Palm Beach Gardens vicinity, no less -- she was elated.She became an unabashed Scripps supporter from the start. She watched closely, and with alarm, the many times it looked like the county might blow it."These are the people who can cure Alzheimer's," she'd say. "And when you see what the disease can do, you don't want anything to stand in the way of that vision."She got to know a Scripps scientist, Malcolm Leissring, who plays a mean metal rock guitar and who heads a lab that's seeking an Alzheimer's cure.Leissring, 38, is pursuing a novel line of research started by his post-doc mentor at Harvard, Dennis Selkoe. Leissring's looking into ways to aid the body in breaking down the protein, called beta-amyloid, that forms the plaques that litter the brain in an Alzheimer's patient.In his lab in Scripps' temporary Jupiter quarters, clinicians are working with pipettes, fluids, graphs. With mice."We grow cells in here," he tells me, pointing to a door.We step into what looks like a storeroom, only with expensive looking machines amid the clutter. One looks like an oven. Another, he tells me, is a centrifuge."We're growing bacteria in here," he says. I'm guessing this is more sophisticated than when I do it by leaving the salami too long in the refrigerator.Alzheimer's has been a consuming intellectual problem to Leissring.But one day last year, he went to see Richard McNally.He was in a nursing home, almost comatose. He couldn't feed himself."Lots of people, they go into nursing homes and they don't know how to act," Patty says, "but Malcolm, he held my dad's hand, and he talked for hours about research -- speaking to me and meeting the other people in the place."She thinks her dad was listening.For Leissring, looking Alzheimer's in the face had a lasting effect.It wasn't until that he "truly appreciated the real-world impact of the disease," he says. "For every patient there is a whole network of loved ones and caretakers who are impacted. The patient sometimes suffers the least."Today in America, about 4.5 million people have Alzheimer's. With the Baby Boomers nearing old age, that number's bound to swell.Many of us will face the same kind of heartbreaks and make the same kind of choices as Doherty's family.We'll pay the same kind of expenses. Like the $7,000 a month for a nursing home where, Patty says, "the staff couldn't find the time to brush his teeth," and "where he'd get bathed just twice a week, on their schedule, no matter what happened -- and we're talking about a man who's incontinent."Palm Beach County, where so large a proportion of the population is elderly, will see a large share of this misery.But now that the Scripps location controversies appear settled, now that Leissring can write a grant proposal with the confidence of knowing his lab's permanent address, there's a real possibility that Palm Beach County might also be the place we see the cure.Richard McNally died on Jan. 3. His breathing had become labored and he couldn't eat. He'd forgotten how to swallow.His children formed a circle around him. Thanked him. Told him how much they loved him.He didn't recognize them.He was 83.His children are recognizing him through something they're calling The Unforgettable Fund."We are so sick of losing everything to this stinking, rotten disease," Patty says, "that we decided to fight back."She's building a Web site. When it's up and running, you'll be able to make a donation, with a click, for Alzheimer's research at Scripps Florida.Every dollar will go directly to the research going on here in Palm Beach County.
Howard Goodman can be reached at hgoodman@sun-sentinel.com or 561-243-6638.
http://www.sun-sentinel.com/news/columnists/sfl-phoward07may07,0,1707702.column

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