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Early onset Alzheimer’s: From coping strategies came a book

Music therapist Noah Plotkin leads a drumming and

Music therapist Noah Plotkin leads a drumming and singing session with Michael Folio as Cheryl Levin-Folio looks on. Credit: TNS / Mark Kodiak Ukena

HIGHLAND PARK, Ill. — Cheryl Levin-Folio can’t anticipate every new milestone of memory loss as she and her husband, Michael Folio, navigate his Alzheimer’s disease.

Sometimes quick thinking comes in handy, as it did when Folio forgot one day to take off his clothes before stepping into the shower. Rather than correct her husband, Levin-Folio joined him in the shower with her clothes on for a laugh.

“I think the next time we should take our clothes off,” she gently told him.

“I made light of it,” she said. “I never correct him. That’s not fair to Michael.”

In the five years since Folio was diagnosed with early onset Alzheimer’s at age 56, the Highland Park couple has adapted their daily routine many times over.

They’d been together for years, but married less than four months, when they received the diagnosis. Folio had experienced confusion at home that prompted a referral to a neurologist.

Less than 5 percent of the 5.1 million Americans with Alzheimer’s disease are early onset patients diagnosed before the age of 61, according to the National Institute on Aging.

After digesting the devastating news, the couple resolved to be proactive in preserving their quality of life, as they had been throughout their careers.

Levin-Folio immersed herself in the literature. She made sure they followed a Mediterranean diet, worked together on stimulating puzzles and kept up their exercise regimen.

“What works one day, may not work the next day,” Levin-Folio acknowledged. “It is really a matter of being flexible and able to adapt to a situation.”

When her husband was no longer able to use a cellphone, they switched to FaceTime, which provides a visual context for the conversation.

Rather than give up restaurant dining to avoid unfamiliar settings or awkward scenes, they now dine earlier, choose quieter locations and frequently dine at a tennis-club restaurant where they are known.

“There is a familiarity that is important to Michael,” Levin-Folio said of their decision to join the club.

She said that if her husband gets up from his seat to use a restroom and makes a wrong turn, there’s a knowing staff member to guide him.

Levin-Folio carries with her a supply of laminated cards that read, “Thank you for understanding. My husband has Alzheimer’s.” She’s found people appreciate the gesture, which can head off an inappropriate remark.

She’s had success keeping him socially engaged with activities that play into long-term memory. When Levin-Folio noticed positive results from his music therapy sessions, she increased the schedule to three times a week.

“I was watching him become more free-flowing with his words after doing music,” she said, of the sessions with therapist Noah Plotkin. “I leave them one-on-one and it’s a jam session.”

She said the sessions shift from “Take Me Out to the Ball Game” to a John Lennon song. He does not look at lyrics and the words are free-flowing.

“It’s very rewarding for Michael, but it’s equally rewarding for me to hear him relive those days of when he played in a band in high school,” Levin-Folio said.

Once a week, Folio works out with a trainer at the local Equinox athletic club, focusing on football drills familiar from his years as a high school and college athlete.

“Those things that work, he does more of,” she said, noting he is bowling and playing boccie more, while still playing golf and tennis.

The milestones of memory loss are coming more frequently these days. He no longer walks the couple’s two golden retrievers by himself, and he has been known to wander. He wears a watch linked with his wife’s iPhone so she always knows his whereabouts — a better safeguard than his cellphone GPS for tracking, she said.

“He might leave his phone behind, but he always puts on his watch. It’s instinct,” she said.

Levin-Folio has written a book called “The 24-Hour Rule: Living with Alzheimer’s” to share the strategies she and Michael have developed to stay active and engaged.

“When I started looking to put together a routine for Michael, there was nothing available that said what to do to preserve his time,” Levin-Folio said. “All of these strategies we have put together have kept Michael engaged — status quo — for five years.”

Levin-Folio was a real estate executive with JPMorgan Chase when she met Folio, who spoke at a business conference she was attending. At the time they met, he had recently spun off a division of Home Depot into a separate company, she said.

The title of the book, “The 24-Hour Rule,” is drawn from a philosophy Folio followed throughout his career. Levin-Folio first heard him speak of it at a business meeting.

“We use the idea in our day-to-day lives, and never needed it more than when we first had to face that diagnosis,” Levin-Folio wrote in the book’s introduction. “When something bad happens to you, you have one day — and one day only — to be sad about it, angry or whatever,” she wrote. “After that, nothing good will come of wallowing in it. You’ll just waste whatever energy you have to move forward.”

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