Alzheimer's Club

BALTIMORE - Baltimore is participating in the longest and largest Alzheimer’s clinical trial ever conducted, hoping to slow the growth of the disease that now afflicts 4.5 million Americans and is projected to affect 16 million by 2050.

Myriad Pharmaceuticals is conducting the trial, which will test a treatment called Flurizan, on 1,600 participants in 125 sites across the country.

People suffering from early Alzheimer's can enroll in the trial to test the medication, expected to slow cognitive decline and help regain memory previously lost. Company officials say no treatment has been able to do this before.

“Most treatments only affect the symptoms, the use of existing capacity or brain cells,” said Dr. Marsden McGuire of Johns Hopkins Medical Institute.

The Phase Three trial is the last step in gaining approval from the Food and Drug Administration for the treatment.

Patients who participated in Phase Two of the trial have already improved and offer evidence that Flurizan may be a major breakthrough.

For information on the trial or on participating, call 888-459-4888 or visit www.myriad.com.

Source: Carolyn Peirce. Trial to test medical breakthrough in Alzheimer's disease treatment. The Examiner (29 June 2006) [FullText]

ST. PARIS, Ohio -- Despite a headache that had dogged him most of the day, Gary Conley stayed up late that night to catch his favorite basketball team on TV, the University of Dayton Flyers.

But when he woke the next morning, he had no memory of having watched the game.

"I couldn’t remember my phone number. I couldn’t even remember my grandson’s name," Conley said.

The episode in January of last year put Conley, then 49, in the hospital for a week. But it wasn’t until May 2005, after rounds of visits to doctors and a battery of tests at Ohio State University Medical Center, that Conley was given a conclusive diagnosis: Alzheimer’s disease.

"My first reaction was, they’re wrong!" Conley said in a recent interview. "My attitude was you don’t get Alzheimer’s when you’re young. It happens to people 70, 80 years old."

Conley regained much of his memory after his hospitalization, but he has good days and bad days. On bad days, he said, placing a name to a familiar face can be impossible, and even simple mechanical tasks can be daunting.

Recently, "I couldn’t remember how to take my deck apart on my lawn mower. It’s just three little cotter pins you have to remove, but I stood there for an hour, and I couldn’t figure it out," he said. "Finally, I went and got a neighbor to help me."

With better means of diagnosing the disease, doctors are discovering Alzheimer’s in a growing number of younger patients, some as young as their 30s and 40s. An estimated 450,000 Americans under age 65 suffer from Alzheimer’s, or about 10 percent of the nation’s 4.5 million cases. It’s the fourth leading cause of death in America.

With earlier diagnosis has come a raft of new challenges for patients, their families and the agencies that serve them. Alzheimer’s patients can live 10 to 15 years following their diagnosis, while knowing in the early stages of their brain disease that it will progressively worsen until they lose touch with reality and, in the final stages, control over their bodies.

Many early-onset patients, like Conley, lose their jobs and their health insurance after being diagnosed, yet are still able to function in other areas of their lives. Conley can no longer drive a truck for a living, but he can continue to drive a car.

Conley has stayed busy helping his father build a barn, doing farm work for his brother and baby-sitting at times for his 2-year- old grandson, Anthony. He continues to show dogs as well, a long- time hobby that has made him an all-breed handler.

But on bad days, Conley not only must fight the memory deficits of his disease but the depression that often comes with it. He is still adjusting his anti-depressant medication.

"At times, it’s like, just leave me the hell alone. I don’t want to get up in the morning. I don’t want to get dressed," he said. "There are times when I’d rather not have known (the diagnosis), because it takes away your existing life that you have at the time."

When his doctor at Ohio State told him he didn’t have to concern himself with the disease for the next 10 years or so, Conley said he couldn’t leave well enough alone. He began researching everything he could about Alzheimer’s, and didn’t like what he found.

"OK, tell me there’s some research out there that says I don’t have to worry," he said. "It’s not out there."

If a way to halt the disease isn’t found in the next decade, Conley says he’ll end up dying "two deaths. I mean we all realize we’re going to die, but for those with Alzheimer’s disease, we’re going to die twice. Chances are, in the last stages, I won’t remember who my grandson is, I won’t remember who my wife is."

Conley’s wife, Georgia, won’t talk about her husband’s condition. "That’s her way of handling it," he said.

It was Conley’s way as well until about two months ago, when he began going to an Alzheimer’s Association support group for patients in the early stages of the disease.

Conley’s daughter, Natasha Chesnut of Springfield, said her father hadn’t even mentioned the disease to her and others in the family until last month. "I think the support group has been good for him. It’s no longer this hush-hush thing for him anymore."

Even though their family has no history of Alzheimer’s disease, Chesnut said the thought that she and her son may be at risk "has definitely crossed my mind. But I can’t worry about myself at this point, I’m more interested in helping him."

Conley says he has decided to speak out on behalf of Alzheimer’s patients while he can. Part of his message is directed at President Bush.

"It’s all right to replace hearts and eyes. We even replace arms. But it’s not all right to do stem cell research? I don’t understand," he said.

Alzheimer’s by the numbers Cases: 4.5 million Americans have Alzheimer’s disease and, as baby boomers age, the number could grow to 16 million by 2050, bankrupting Medicare and Medicaid. Your risk: 7 percent chance at ages 65 to 74; 25 percent chance at ages 75 to 84; 50 percent change at ages 85 and older. Drugs on trial: More than 50 compounds are being tested to treat Alzheimer’s. Current medications control symptoms but don’t stop progression of the disease. Early diagnosis: A battery of tests can diagnose early Alzheimer’s with 90 to 95 percent confidence.

Source: Alzheimer’s Association, Network of Care: Dayton Daily News (23 June 2006) [FullText]