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For their own good
Fifty years ago, they were screwed-up kids sent to the Florida School for Boys to be straightened out. But now they are screwed-up men, scarred by the whippings they endured. Read the story and see a video and portrait gallery.
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Trials seek to sketch Alzheimer's outlines
By STEPHEN NOHLGREN
Published February 27, 2007
Duval residents Jack and Virginia Wright stick their heads into a PET scannner.
Tampa retiree Ott Culpepper counts backward and matches up shapes.
Sun City Center retiree R.V. Jolley takes little white pills but has no idea if they do any good.
Personal heartache has led each of them to become guinea pigs in the battle against Alzheimer's disease.
Clinical trials, including 24 under way in Florida, give people a shot at cutting-edge information and experimental medication. Trials also offer a chance to contribute to society.
"We have seen the terrible devastation of this disease," says Virginia Wright of Orange Park. "It's time to find a cure."
A decade ago, she and her husband, Jack, assumed care of his older sister, who could no longer live alone.
Now Jack, 78, is getting abnormally forgetful. He will set out to accomplish three tasks, then forget one or two. When Virginia, 62, reminds him, he often doesn't remember that he ever planned to do them.
His memory loss followed two heart surgeries, so it might not be caused by Alzheimer's. Digital brain mapping at Jacksonville's Mayo Clinic could sort it all out.
The Wrights participate in the Alzheimer's Disease Neuroimaging Initiative, a five-year, $60-million study financed by the federal government and drug companies.
Participants undergo two hours of mental tests. They also are injected with compounds that light up on PET scans or MRIs when the brain contains the plaques and neuron tangles associated with Alzheimer's.
If plaque and tangle formation turns out to correspond directly with cognitive decline, Alzheimer's research - and treatment - will take a quantum leap forward.
Trials on experimental drugs can cost $100-million, because Alzheimer's progresses so subtly that researchers must track hundreds of subjects for several years.
A scan that could pick up small brain changes would be more precise. Clinical trials might require only 100 test subjects and six months to determine if a new drug is working. Costs of research would nosedive.
Brain scans could also diagnose Alzheimer's at an earlier stage, maybe before symptoms show. Once effective medication hits the market, people could stave off the disease before massive cell destruction sets in.
"If my husband should start to decline, we would know it," Virginia Wright says.
Tampa resident Ott Culpepper, 81, suffers occasional senior moments - like blanking on where his son earned his M.D.
But Culpepper isn't worried for himself. He says his ancestors lived long. His three children - ages 59 to 63 - are not so lucky.
Their mother had Alzheimer's disease, as did four of her five siblings. If Alzheimer's is inherited, as many scientists believe, Culpepper's kids are already in peril.
So once a year, he troops over to the Johnnie B. Byrd Sr. Alzheimer's Center and Research Institute to surrender blood, sacrifice his knees to the reflex hammer and submit to two hours of mental tests.
He is one of 800 Floridians helping to create a four-year data bank of mental decline. Some participants, such as Culpepper, are healthy. Some have a condition called Mild Cognitive Impairment. Some have early stages of Alzheimer's.
The database will let future scientists study subjects' blood for genetic makeup and other "biomarkers" that might track who gets Alzheimer's and how it progresses.
"I am very concerned for my children," Culpepper says. "Medical science can advance only as we help them. I think we have a duty to volunteer in these clinical trials.' "
Test subjects often must be at least 50 years old, and many trials are looking for people with mild to moderate Alzheimer's.
Participants do not know if they are receiving medicine or placebos.
Sarasota resident R.V. Jolley, 84, has his fingers crossed. He's taking eight pills a day from the Roskamp Institute in Sarasota.
His brother had Alzheimer's, and doctors tell Jolley he probably has it as well, he says. He loses his keys, forgets people's names and botches minor arithmetic.
"I feel like a fifth-grader," he says.
Jolley and his wife, Willie Mae, hope that one of the medicines he takes will help.
"We have to be optimistic," she says," because you would be so depressed if you didn't."