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What's next?

Published February 15, 2007



Rich Wilber has a sunny smile, bright eyes and a confident way about him. He's athletic, has a girlfriend and a good job. At 37, Rich's success is extraordinary, given that when he was a newborn diagnosed with Down's syndrome, some doctors suggested that his parents abandon him in an institution. "Everybody's so proud of me," he tells his dad, Rick Wilber. No one is prouder than Wilber. But that pride is tinged with fear that his son could lose all he has achieved to another medical condition: Alzheimer's disease.

Alzheimer's is three to five times more common in people with Down's syndrome than the general population. It also tends to strike earlier; as young as age 30.

Rick Wilber, 58, a writer and journalism professor at the University of South Florida, knows Alzheimer's firsthand. His mother has been diagnosed with it, and his brother-in-law, who also had Down's syndrome, had Alzheimer's too.

Now Wilber is watching. Waiting. Hoping that scientists will get ahead of the disease before it might get to Rich.

"I hold out hope," said Wilber, 58. "It's like watching this life and death football match from the sidelines, and I'm cheering them on."

People with Down's syndrome are living longer, better lives. Medical advances are helping them overcome deadly complications, such as congenital heart defects and respiratory problems. Since 1983, life expectancy for the typical person with Down's syndrome has shot up from 25 to 56 years old.

But now, they're living long enough to fall prey to Alzheimer's.

A quarter of people with Down's syndrome age 35 and older show symptoms of Alzheimer's, said Theresa Renaldi, National Down Syndrome Society spokeswoman. Most people over 40 show signs, she said.

"It definitely is prevalent," Renaldi said, "I think it's becoming more of an issue and more on people's minds than in the past."

Why does it strike so early?

Chromosomes, strands of DNA containing genes, pass on the hereditary information our cells need to live.

Most humans have 46 chromosomes. People with Down's syndrome have an extra copy of Chromosome 21, bringing the total to 47.

In July, Stanford University scientists identified a gene on Chromosome 21 that creates a protein which, when overproduced, can alter memory and brain function.

Because people with Down's syndrome have an extra copy of that chromosome, they produce more of the protein. A part of that protein, beta-amyloid, builds up as plaque on the brain.

"We may still get Alzheimer's disease, but (the plaque) doesn't start to accumulate until we're 60, 70, 80," said Dr. Mike Mullan, director of the Roskamp Institute Memory Center in Sarasota. "In Down's syndrome, the plaque starts to accumulate when we're 20, 30, 40, because there's so much more of it being made."

Despite the statistics, some people in the Down's syndrome community downplay the link.

Shirley Lawyer, a director with Up With Downs of Pinellas, a Down's syndrome support network, worries that overblown media coverage might cause undue fears.

"Their brains naturally kind of learn how to work around (the plaques)," she said. "They don't always show the signs and are even able to cope with it better."

Wilber can't ignore the statistics.

"All I can do is talk to the experts and do my research," he said. "I don't think there's any question that there's a race going on for people like Rich right now."

Rick Wilber has seen it before.

His brother-in-law, Jim Smith, had Down's syndrome and Alzheimer's. Smith died of a heart attack eight years ago at age 49.

But before he died, Smith was "slipping away." Wilber recalled a family cruise vacation.

"One time, Jimmy took a nap and he woke up in time for dinner and thought it was the next morning. He was very, very confused and he wouldn't eat dinner because it was time for breakfast," Wilber said. "He was unpersuadable."

Smith's decline was "one of the things that started me doing my own research on the connection," said Wilber, who has overseen Rich's every medical trial and personal milestone.

When Rich was born, doctors called him a "Mongoloid" and suggested Wilber institutionalize him.

Rich's mother left the family when Rich was 6, leaving father and son alone.

"It's very difficult and very stressful. She couldn't take it anymore, so she left and I took over fully."

Rich stayed close to his maternal grandparents, who over the years have arranged a number of meetings between him and his mother.

He triumphed over circumstance, staying mostly healthy, getting a job (he now works at a McDonald's in south St. Petersburg) and learning to live alone in his own apartment.

Wilber, a former newspaper reporter, started gathering information on the threat Alzheimer's might pose to his son, and monitoring research advances.

He started Rich on ginkgo and vitamin C after reading they helped with memory. He heard red wine helps, so Rich drinks grape juice for the antioxidants.

He sent Rich's picture and information to Stanford University's Center for Research and Treatment of Down's Syndrome. The picture appeared on a research catalog cover.

If an opportunity opened, he would take Rich to California for treatment and testing "in a flash."

"I've spent my whole life trying to seek the truth. I want to know. I think you can face the truth and try to deal with it as best you can."

Alzheimer's doesn't boldly announce itself in people with Down's syndrome, who already face many cognitive challenges. It peeks through pinholes of inconsistency.

People with Down's syndrome thrive on routine and repetition. When those behaviors decline, experts say it's a sign dementia is setting in.

"They can't make the sandwiches," said Dr. Dan Richards, former director of the University of South Florida Memory Disorder Clinic. He recalled a patient who had Down's syndrome and Alzheimer's.

"It was always her job to make the sandwiches, and she was so upset because she couldn't make the sandwiches anymore. It's heartbreaking."

Adelaide Hamill saw it happen to her son, Brian, 57, who has Down's syndrome and Alzheimer's.

His whole life, Brian changed his bed and shaved his own face. He always laid out the next day's clothes.

Those things are gone.

"It seemed to be kind of sudden, the things he couldn't do," said Hamill, 81, who lives in Orlando.

Wilber knows what to look for in his son.

"Rich lives in his own apartment, and he's very meticulous about keeping the place clean," Wilber said. "It's like a military making of the bed. When I see that those sorts of things no longer are happening, I'll know he's starting to decline."

Advances in Alzheimer's research for the general population are eagerly anticipated by many in the Down's syndrome community.

Research facilities such as the Roskamp Institute are testing drugs that specifically target the suspect protein.

In September, Roskamp launched an 18-month study, in partnership with Trinity College Institute of Neuroscience in Dublin, Ireland, to see if the high blood pressure drug Nilvadipine could decrease the protein.

USF researchers are testing an Alzheimer's skin patch that may have fewer side effects than a previously studied injectable medicine.

"We're really now getting into a period where more and more drugs are going to come out on the market," said Mullan. "I've counted at least 50 drugs in development that are about to be released into clinical trials. This is very good. This is very optimistic."

Such drugs could also improve the overall brain functioning associated with Down's syndrome - even for those who never develop Alzheimer's. Stanford University research shows that the suspect gene may be generally destructive, not just in old age.

"That would make us think that perhaps in people with Down's syndrome, we would want to try (Alzheimer's) drugs very early in their lives," Mullan said.

Adelaide Hamill doesn't put much stock in research for her son, who has already surpassed the Down's syndrome life expectancy.

"Every once in a while, you'll hear a little something on TV," she said. "It's way in the future. I'm sure it's not going to be in time for Brian."

For all the thinking and research he does on Alzheimer's, Wilber tries to stay focused on the present.

Every other week, he and Rich go out to a park in St. Pete Beach and shoot hoops. Rich always beats his dad, who stands in awe of his son's unfailing optimism.

"The best thing about it is, he calls all of this 'my good life.' "

Rich's habits and personality are intact. Maybe he'll be lucky enough to dodge Alzheimer's.

"On the one hand, you always want to plan for the future for Rich, but on the other hand, I very much want to enjoy the present. My job is to plan for the future while sort of celebrating the moment we're in."

Stephanie Hayes can be reached at or (813) 269-5303.

Fast Facts:

About Down's syndrome

- Down's syndrome is the most common chromosomal abnormality, affecting one in every 733 babies. There are more than 350,000 people living with Down's in the United States.

- Eighty percent of babies with Down's syndrome are born to women younger than 35. However, the incidence of Down's syndrome does increase with maternal age.

- People with Down's syndrome have 47 chromosomes in each cell instead of the usual 46. The extra is a copy of Chromosome 21.

- Common Down's syndrome congenital conditions include mild to moderate mental retardation, heart defects, respiratory, hearing and thyroid problems. People with Down's syndrome are more likely to develop conditions such as childhood leukemia and Alzheimer's disease.

-Physical traits may include low muscle tone, short stature, an upward slant to the eyes and a deep crease across the center of the palm.

-The syndrome is named for John Langdon Down, an English physician who in 1866 published a scholarly work accurately describing it as a distinct syndrome.

- Many people with Down's syndrome go to school, have jobs and have successful relationships. Health care, educational programs and quality home lives have helped extend life expectancy dramatically.

Source: the National Down Syndrome Society


National Down Syndrome Society

666 Broadway

New York, NY 10012

Toll-free 1-800-221-4602

National Down Syndrome Congress

1370 Center Drive, Suite 102

Atlanta, GA 30338

Toll-free 1-800-232-6372

Florida Developmental Disabilities Council

124 Marriott Drive, Suite 203

Tallahassee, FL 32301

(850) 488-4180

Down Syndrome Association of Central Florida

1137 Edgewater Drive, Suite 101

Orlando, FL 32804

(407) 540-1121

Up with Downs of Pinellas

P.O. Box 523

Largo, FL 33779

(727) 462-2274


[Last modified February 15, 2007, 06:33:34]

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