From today's New York Times:
Living With Alzheimer’s Before a Window Closes
By JANE GROSS
The New York Times
29 March 2007
Mary Blake Carver gazes from the cover of a neurology magazine this month, under the headline “I’m Still Here!” She often feels like shouting the message to her friends, her children, her husband.
Ms. Carver, 55, is among the growing ranks of people in the early stages of Alzheimer’s disease, when short-term memory is patchy, organizational skills fail, attention wanders and initiative comes and goes. But there is still a window of opportunity — maybe one year, maybe five — to reason, communicate and go about her life with a bit of help from those around her.
Yet Ms. Carver is often lonely and bored. Her husband leaves her out of many dinner table conversations, both say, because she cannot keep up with the normal patter. He insists on buttoning her coat when she fumbles at the task. She was fired as a massage therapist because she lost track of time. So Ms. Carver fills her days by walking her neighborhood on the Upper West Side of Manhattan, always with her dog, so she looks like “an ordinary person,” she said, not someone with “nothing better to do.”
Five million people in the United States have Alzheimer’s disease, according to a study last week by the Alzheimer’s Association. About half, 2.5 million, are at the early stages of the disease, other studies have found, struggling to pass for normal.
They are impaired but not helpless or demented, and now a growing number are speaking out about how it feels to be them: Silenced prematurely or excluded from decision making. Bristling at well-meaning loved ones who boss them around. Seeking meaningful activities to fill their days.
Out of their individual frustrations, these patients are creating a grass-roots movement to improve services and change public perceptions. And they are making a mark.
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