On a trip to the Far East, the well-traveled couple from...

Coping/In Your Prime

June 25, 1993|By Bard Lindeman

On a trip to the Far East, the well-traveled couple from Chicago spent time in Hong Kong, where Evelyn Stone, a wife and mother, went shopping. Hours later, she returned with "an ungodly number of handkerchiefs -- like 15 dozen."

The story-teller was her husband, Jerry, recalling this event over breakfast one recent morning. "When I questioned her, she became hostile, even accusing me of not trusting her," he added.

These were the first signs of what much later would be diagnosed as Alzheimer's disease. But Stone knew nothing of neurofibrillary tangles or neurological anomalies. Perplexed and sick with worry, he did what any intelligent lay person would have done. He spent time in a medical library.

"I took out 10 books on neurology. Only three even mentioned Alzheimer's," he continued. "The longest mention, about three pages, was in a 680-page text. It said only that Alzheimer's was an obscure brain disease, without a cure and death was inevitable -- within seven years."

Evelyn Stone lived 17 years as an Alzheimer's patient and, at the end of her ordeal, died quietly in her sleep. As a result of his family's painful experience, Jerry Stone became the force behind the founding of the Alzheimer's Association in Chicago in 1980. To no one's surprise, Stone became board chairman.

Moreover, the bringing together of all who genuinely care about curing Alzheimer's -- which Stone calls "the most expensive, and most tragic, of all diseases, when you consider the costs of care-giving" -- was an epochal event deserving far wider recognition. With this thought in mind, I traveled to Chicago to interview the soft-spoken, self-effacing Stone, who remains honorary chairman of the Alzheimer's Association.

"When I first called Chuck Percy, my United States senator, to ask for his help, he wanted me to spell Alzheimer's for him," Stone said. He moved easily from one anecdote to another, each with the same message: In the '70s, too few Americans knew anything or cared about Alzheimer's.

"Finding a cure for Alzheimer's is like searching for the Holy Grail," Stone has said. Now 80, and happily remarried, he nonetheless takes on another mien and tone of voice when remembering his late wife's ordeal. The question has been, "What quality is most important to the Alzheimer's care-giver?"

"Lots of love," Stone answered, and added, in amplification: "tenderness, patience, being attentive. I learned, by trial and error mostly."

He spoke of Evelyn Stone's gifts. "She had played the violin and piano since she was 5. She played like an archangel -- and among her favorite pieces was Bruch's violin concerto." So, with the very best of intentions, Stone took his mate to hear the Chicago Symphony perform the work. The night was a disaster.

"She couldn't sit for any length of time," Stone recalled. "She squirmed and demanded that we leave. I couldn't understand this behavior. It took me a year to figure out that in these situations, which were common, she had to go to the bathroom. Since Evelyn couldn't express this [the disease precluded her from comprehending and explaining the problem], her reaction always was to want to leave."

It is Stone's conviction that not nearly enough money is spent on research into a disease for which there is no known cause or cure, and no single diagnostic test. Meanwhile, the big money, and the big noise, is directed toward AIDS. But Stone is not one for fussing or strident speeches. Rather, he believes: "If you have some time, do something worthwhile. If you have some money, share it."

Jerry recruited friends to form the Zenith Fellows, more commonly known as "The Cloud Nine Research Group." You get appointed to this panel by donating $1 million. The 11-member panel meets once a year. "We give out grants to fund what we consider trail-blazing [Alzheimer's] research, to those few people willing to take a chance," Stone said.

It is the mark of this man that raising $11 million for research -- projects that go beyond the work funded by the federal government and the Alzheimer's Association -- makes more sense than writing fiery letters to the editor.

So why, in his 80s, does Stone persevere in hot pursuit of the Holy Grail of research science: a cure for inscrutable Alzheimer's? "You go at every big challenge by first rolling up your sleeves," Stone said, ending his lesson about old-fashioned volunteerism that acknowledges one man, or woman, can make a difference.

The Alzheimer's Association, a privately funded voluntary health organization, is headquartered in Chicago and has 215 chapters located in all 50 states. It is affiliated with some 1,600 support groups. To locate the chapter nearest you, call (800) 272-3900.

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