Family ponders future after Alzheimer's diagnosis

LAKES OF THE FOUR SEASONS, Ind. (AP) - John Unterfranz was teaching night school in Merrillville when he first noticed the signs. He would get to a certain point in a lesson, then completely forget what he was trying to explain.

This was, to put it mildly, unusual for a man who had recently retired from a more than three-decade career as a high school instructor. He mentioned it to his wife, but that was it.

Then he had difficulty buttoning his dress shirts. Handiwork around the house took longer than usual. He'd lose his perception while driving at night.

He went to see a neurologist, then a psychologist. All along, he and his wife researched Alzheimer's disease. The symptoms seemed to match up. He was diagnosed with the early-onset form of the disorder last November.

Even though Alzheimer's has no cure and is always fatal, the Crown Point man vows to meet it head-on.

"I intend to fight this thing through. I don't intend to give in to it," said Unterfranz, 62, who has the tough-yet-fatherly air of a former football coach (which he is).

"I don't think there's a day I get up that I don't think about it and wonder why I got it," he told The Times (http://bit.ly/1zXqlNK). "But I'm still young enough where I'm going to have a lot of good years."

Unterfranz is one of the more than 200,000 Americans younger than 65 living with Alzheimer's. The younger-onset form of the disease has been getting a lot of attention lately, with the release of the film, "Still Alice," and its lead actress, Julianne Moore, winning an Oscar for her performance. The movie, which tells the story of an Ivy League professor who develops Alzheimer's in her 50s, is currently playing at theaters in Schererville, Portage and Michigan City.

Even though there's no way to prevent, stop or even slow Alzheimer's, early diagnosis is still important, according to experts. They say it allows individuals to seek treatments that can affect future quality of life, participate in clinical trials (find them at www.alz.org/trialmatch) and get their financial, legal and care plans in order.

"Early treatment improves quality of life, and keeps people at home longer and able to talk and communicate for a longer period of time," said Dr. Martin Zelkowitz, a neurologist on staff at Ingalls Memorial Hospital in Harvey.

Zelkowitz noted that early-onset Alzheimer's has a stronger genetic component, and said the progression of the disease can depend on a person's underlying intelligence and skill set. But since so little is known about the disorder, clinical trials and studies continue to go on across the country. Zelkowitz worked in a laboratory in the late '60s and early '70s that studied the brain plaque prevalent in Alzheimer's patients.

"Fifty years later, we're not further enough along in understanding what's going on," he said. "We need to figure out a way to make smart neurons resistant to the neurodegenerative process."

Zelkowitz added that he expects to see a better treatment for Alzheimer's within a decade, but only with increased funding for the National Institutes of Health. The NIH director testified before Congress last year that federal funding for Alzheimer's research is so low that only one of every six scientists with a promising idea gets the money to study it.

Sarah Milligan, a Northwest Indiana-based social worker for the Alzheimer's Association, said a diagnosis doesn't mean a person's life is over. She tries to persuade those with the disease to focus on the things they still can do.

She also noted that individuals with early-onset Alzheimer's generally have more time before the disease reaches its full impact. And with time comes hope.

"We always encourage people that we never know what's going to happen," she said. "Breakthroughs or changes may occur."

Unterfranz is banking his optimism on just that.

The former technology instructor has had a rough go of it since he took early retirement from Morton East High School in Cicero, Illinois, in 2008. He cut off two fingers while doing carpentry work around the house. His heart started beating irregularly. Then came the Alzheimer's diagnosis.

"I probably should have just kept teaching," he said, half-joking.

He initially thought his Alzheimer's might have been caused by playing high-school and college football, where he says he got his "bell rung" more than a few times. But his doctors told him that likely wasn't the cause.

These days, Unterfranz's memory ebbs and flows. He'll have a normal day followed by one where he can't remember what he's talking about, mid-conversation.

So he wears a medicated patch that's supposed to help with cognitive functioning and daily tasks. He follows the advice of an expert who encouraged him to "exercise and socialize." He plans to participate in a clinical trial in the northwest suburbs.

"I at least want to see my grandkids grow up - that's important to me. And I'm counting the ones that are going to be born in July," said the soon-to-be grandfather of four. "I really don't know what the future holds. Is something going to go bad all of a sudden?"

"Frustrating, I think is the best word for it," added his wife, Jeanne, who is 62 and also retired. "If he had cancer, you could go the doctor and they would do chemotherapy and radiation, and he'd be better. There's nothing like that yet for Alzheimer's."

Whatever happens, she plans to be by John's side, as his primary caregiver. She knows seeing her husband of 33 years deteriorate, helplessly, before her eyes won't be easy.

"Coming back from communion at church sometimes, he doesn't get back to the right pew, and he has this look on his face of 'Where am I supposed to be?'" she said, choking back tears.

"It's a boring Mass, that's all," John said, trying to insert some levity.

For now, the Unterfranzes, who live in a cozy, natural-light-filled house along the water in Lakes of the Four Seasons, are readying their legal arrangements, and plan to get some traveling done, including an upcoming Alaskan cruise.

"You never know what the future holds," John said, his 3-year-old grandson watching YouTube videos in the next room. "Within the next five years or something, hopefully we'll have this solved."

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Information from: The Times, http://www.thetimesonline.com