Of the 5 million people in the USA with Alzheimer's, about half are in the early stages of the disease, and some, like Richard Taylor, can still talk about the fear that goes along with daily memory loss.
Taylor was only 58 when he started experiencing the symptoms of Alzheimer's. Today, the 64-year-old resident of Houston no longer can drive. He no longer can work as a psychologist. His wife, Linda, works the 3-to-11 shift at a nearby hospital to pay the bills.
"I'm a little edgy," Taylor says, attributing his anxiety to the holes in his memory that come up with little warning and then disappear. Every day he has to deal with some new failing in his ability to think or remember. He forgets he has just had a conversation with his wife. He misplaces his shoes. He gets lost. Taylor knows that at some point, he will lose the ability to talk.
But Taylor refuses to sit around waiting for the incurable brain disease to decimate his mind. He's speaking out at universities, scientific conferences, Alzheimer's discussion groups and on his website (richardtaylorphd .com). And he has written Alzheimer's From the Inside Out (Health Professions Press, $18.95) about his memory loss with insight and compassion.
Taylor and others like him say they must speak out for those who already have been silenced by the disease. They're asking for services to help them retain as much independence as possible. And they're urging researchers to find better treatments, such as a drug that might slow or stop the progress of the disease.
Gone are the days when the vast majority of people with Alzheimer's remained silent while others made decisions for them, says Chuck Jackson, 53, of Albany, Ore. He watched Alzheimer's kill his mother in 1973, and he is now in the early stages of the disease.
"It's not like it used to be," Jackson says, adding that more people are getting a diagnosis at an early stage when the disease has yet to ravage the brain and has produced just mild symptoms.
Say "Alzheimer's" and most people think of a confused, disoriented older person slumped in a wheelchair, says John Morris, a neurologist at Washington University School of Medicine in St. Louis. People with mild forms of the disease do have some forgetfulness, but they usually can perform most daily activities without help, he says.
These early-stage patients range in age from 40 to 80. They represent a group that's 2.5 million strong and growing in number, says Peter Reed of the Chicago-based Alzheimer's Association.
People in early stages of the disease have followed the lead taken by AIDS activists of the past and increasingly are talking openly about the stigma the disease carries and the other problems they face.
| • | Patients take action on early Alzheimer's
They're no longer willing to wait in silence USA Today, Tuesday, July 24, 2007 Byline: Kathleen Fackelmann |
|---|
| Story also ran in 1 others: Sports Weekly |
|---|
|
Publication Information Revised: Friday, May 23, 2008 |