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Fitness Files: Feeling hopeful after seeing help for Alzheimer’s sufferers

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I left my conversation with Lynn feeling melancholy. Had trouble sleeping that night.

My neighbor of 40 years had caught me in the alley, walking the Chihuahuas.

“Phillip’s fighting the caregivers, saying every foul word he knows,” Lynn said. “He was everyone’s favorite at Memory Lane Care. They’re not happy with him now.”

Phillip, Lynn’s husband of 52 years, is an Alzheimer’s patient. He was diagnosed four years ago, as was another neighbor, the most creative person I’ve ever known. Barry wrote poetry, plays, painted.

His house just sold, underscoring the finality of his departure from our lives. My parents also suffered the indignities of dementia in their final years.

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A scourge — that’s what I call dementia.

On Sept. 12, I attended “The Future of Alzheimer’s Disease Research Conference” at UC Irvine’s Institute for Memory Impairments and Neurological Disorders. Together with the Alzheimer’s Assn., UCI gathers bright stars of the scientific community to present to doctors, scientists, caregivers and affected families.

Frank LaFerla, charismatic dean of UCI’s Ayala School of Biological Sciences, opened the conference, expressing the urgency of the mission. “Every 67 seconds, a new person develops the disease, 84,000 in Orange County alone,” he said.

And UCI is the place to be. It is a National Institutes of Health-designated Alzheimer’s disease research center, along with Harvard, Mayo, Georgetown and others.

I heard seven “sparklers,” scientists on the vanguard, developing diagnostic tools, genetic markers and stem cells produced from skin samples.

Listening to scientists fired synapses. A panel of Alzheimer’s patients won hearts.

A former third-grade teacher, Lucy, had the most advanced memory loss. An engaging, petite brunette, Lucy said, “I can no longer drive, read, watch TV, and [giggling] I get lost all over the place.”

Her husband, Roger, told the group the couple’s mantra: “Lucy didn’t cause her Alzheimer’s. Can’t control it. Can’t cure it. Can choose to have a good day.”

He added, “I love some people in this audience. I’m in love with Lucy.”

Lucy’s final comment: “It’s not that bad.”

In 2010, Lucy noticed changes. “I knew my students well but kept name cards on desks,” she said. “Couldn’t remember names.” She retired from teaching at age 60 and, two years later, knocked on the door of UCI’s Memory Assessment and Research Center.

And in that decision lies some of Lucy and Roger’s realism and optimism.

UCI MIND worked with Lucy and her family, administering gold-standard diagnostics. In a family meeting, clinicians revealed a definitive diagnosis, which is tremendously important in planning. Statistics show that Lucy could have spent years in standard medical care, seeking the answer that UCI provided in one stop.

Some people go to UCI MIND worried about Alzheimer’s but find that they have a vitamin B deficiency or require an adjustment of medications. After administering 8,000 tests, UCI is the preeminent assessment stop. Ongoing treatment is done by physicians in the community.

Lucy’s Alzheimer’s diagnosis led the couple to UCI’s targeted referral system. MIND clinicians reduced fear, presented clinical trials that might help and referred them to the Alzheimer’s Assn., which offered resources to chart their journey.

Lucy returns to UCI MIND yearly. She takes satisfaction in contributing to scientific research, which may help her but will almost certainly help her genetic offspring, Roger and Lucy’s children and grandchildren.

My day with the researchers schooled me in brain circuitry and the complex path to Alzheimer’s treatment. The panel of patients underscored the reality that there is no cure. Yet, after 10 hours with UCI MIND, I joined Lucy and Roger in feeling constructive. I slept well that night.

Newport Beach resident CARRIE LUGER SLAYBACK is a retired teacher who ran the Los Angeles Marathon at age 70, winning first place in her age group. Her blog is lazyracer@blogspot.com.

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