Alzheimer's predictive test not an option for everyone

Karen Henley's husband Michael was diagnosed with early onset Alzheimer's in 2001, at age 36. His mother had been diagnosed at age 45 but he didn't know it could be inherited.

He was devastated, she said, knowing his two children, now 17 and 18, also had a 50 percent chance of inheriting it.

If an accurate early diagnostic test had been available, said Henley, of Westbury, the couple would have opted for it before having children. "I don't know that we would have had children," she added Tuesday.

She said, "I love my children dearly, I'd give my life for my children, but to know this is hanging over their heads is not easy.

"Both children told her they wouldn't go for a predictive test, she said. "In their mind, they don't know and they hope they don't have it, and somewhere down the line they'll find a cure for it, before it got to the point where they had to be concerned about it."

For now, she and the children continue to volunteer to raise funds and awareness for Alzheimer's. "It's hard. We were told [he'd live] five to seven years, now it's nine years and it's getting more difficult every day . . . It's a very unforgiving hideous disease," she said.

Robert Schreibman, 90, of Forest Hills, lost his wife of 66 years to Alzheimer's in late 2007. While he welcomed news of the test as a research aid, he personally wouldn't want to take it. "I wouldn't want to have that knowledge without there being a medication to cure or slow it down."

He volunteers at the Alzheimer's Foundation in Port Washington. "They [Alzheimer's sufferers] come off the bus and they throw me kisses. They remind me of my wife. I just like being there. I can't say I enjoy it but it's very fulfilling. That's where I spend my days."

Harriet Garzero, 77, of Center Moriches, said her husband Edward, 83, has continued to lose some ground in the years since his diagnosis but is still able to read, watch television and hold conversations. An artist, he looked forward to a visit to the Metropolitan Museum of Art in Manhattan. And he is in a faith group with his wife, and reads Scripture with comprehension, she said.

"I know Edward is at peace with his diagnosis and I am too. You deal with what you know."

"We have a life and we have a lot to be grateful for. He's in no pain, I'm in no pain," she said. "I'm grateful for his good health now."

But, she said, it would have made a difference to them if they'd had a chance at earlier diagnosis. "We would have started transferring the day-to-day jobs of daily living to me earlier. It would have been a longer apprenticeship . . . We'd have downsized more, our life would have been more preparatory to his not being able to do a lot of things instead of me having to quickly play catch up, which I did."

If she herself had memory loss, "I would happily enter a [research] study, I really would. I would want to know in advance - are you kidding? Then you plan, you have strategies, you set up systems so there are no surprises. The surprise is gone."