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msnbc.com contributor
updated 7/26/2007 9:44:59 AM ET 2007-07-26T13:44:59

When her husband suggested she might be suffering from Alzheimer’s disease, Mary Carver was shocked. It just wasn’t possible. Alzheimer's, she thought, was a disease of the elderly, and she was only 51. “I was horrified when he told me,” says Carver, now 55. “I didn’t realize there was a problem. I thought he was being overprotective.”

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As it turned out, her husband, Steve, had been researching the disease and had hit on the right diagnosis to explain Carver’s memory lapses and attention problems. While the vast majority of the 5.1 million Americans with Alzheimer’s are over the age of 65, the Alzheimer’s Association estimates that 200,000 of them have early-onset disease, like Carver.

Many of those with early onset can trace the disease to a single gene, says Dr. Steven DeKosky, director of the Alzheimer’s Research Center at the University of Pittsburgh. But in some cases no one knows exactly why the disease emerges early. It may simply be the cumulative result of many genes mutating in just the wrong way, DeKosky says.

Regardless of when the disease starts, the symptoms and rate of progression are essentially the same, he notes. But the timing can be all important when you look at the impact of the disease. A tragedy no matter when it strikes, early-onset Alzheimer’s can be even more devastating.

“For those with early onset, it’s quite a different experience,” says Dr. Peter Reed, senior director of programs for the Alzheimer’s Association. “Many are still in the workplace. And there are access issues when it comes to Medicare for those under 65.”

Unexpected challenges
Beyond this, it’s not unusual for a patient with early-onset Alzheimer’s to have teenage children still living at home, making for more than the usual amount of friction. And as the disease progresses, families that might be looking toward college expenses may suddenly not only need to make do with less income, but also have to shoulder the expense of hiring someone to watch over the patient while the unafflicted spouse continues to work.

Right now Carver is at an early stage of the disease. Medication helps her feel more normal. And aside from stumbling over the occasional word, she remains articulate and thoughtful as she talks about how her life has changed.

But Alzheimer’s has left Carver feeling isolated and afraid of straying far from her Manhattan home. Once she would have thought nothing of walking five blocks to one of her favorite haunts, the American Museum of Natural History. Now she’s hesitant to make the trek on one of the many days she spends by herself. “I’d like to go again,” she says, “but I’m kind of afraid of getting lost in there. There are so many rooms. I’d be unnerved if I had to ask someone for help every time I went into a different room.”

Carver lost her job as a massage therapist not long after her diagnosis, and she misses both the work and the friends she made there.

And it’s not just friends from work who have disappeared from her life. Others — such as mothers who used to phone to chat about their children — don’t call anymore. Carver thinks that’s because she’s an uncomfortable reminder that Alzheimer’s is a possibility for her friends or their parents. She doesn’t call them, she says, pausing for a moment, “because sometimes I kind of feel like I’m vacant.”

Carver hopes that her early diagnosis will buy her a little more time. She attends group therapy sessions at the New York City chapter of the Alzheimer’s Association to problem-solve and commiserate with others who suffer the same symptoms and losses.

And she hopes she’ll keep her mind sharper for longer by exercising her brain in a mental-stimulation class there. “Maybe I’ll have a longer period of being cogent, of not being tied down by [Alzheimer’s], of not being in a hospital,” she says. “That better be a long time away. I have a daughter who is 17 and a son who is 20. I’d like to be able to hold my grandchildren.”

Linda Carroll is a health and science writer living in New Jersey. Her work has appeared in The New York Times, Newsday, Health magazine and SmartMoney.

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