Cheryl Levin-Folio received the phone call on a Friday afternoon nearly four years ago. A neurologist had some news for Cheryl and her husband, Michael Folio, 56 at the time. Tough news. Michael had early-onset Alzheimer’s.
Michael and Cheryl had been married for a grand total of four months.
“I cried when I got off the phone,” Cheryl, now 56, recalls. “We had plans to go out with friends that night, so I didn’t tell him.”
She told him two days later, on a Sunday morning.
One of Michael’s first reactions in front of his wife was, “You didn’t sign up for this when we got married.” Cheryl’s quick reply: “We’ve never run away from anything; we’re not going to run away from this.”
Michael, nearing his 60th birthday, and Cheryl order breakfast on a July morning at Country Kitchen in Highland Park, their hometown. Michael’s Alzheimer’s is in the moderate-to-severe stage. We’re at a table near the front window of the restaurant. It’s warm outside. It’s bright and sunny inside, thanks mostly to the expressions of Michael and Cheryl. Michael sports a contagious smile and a perma-twinkle in each eye. Cheryl, animated and wide-eyed, has much to say and can’t wait to share it.
They are here to tell a love story.
“I met Michael 15 years ago, and he became my mentor [in the real estate industry],” Cheryl says. “I had tremendous respect for him before I fell in love with him. We are truly friends. He continues to make me laugh.
“My husband has always had a personal philosophy regarding the handling of a challenging situation: ‘You have one day, only one day, to be sad or angry or frustrated about something.’ It’s the day you get to cry, feel depressed, express any emotion you need to express. The next day you put a plan in place.”
Cheryl’s plan, the day after that call from the neurologist: learn everything there is about Alzheimer’s.
“I went to a bookstore and bought every Alzheimer’s book,” she says, in between bites of an avocado and spinach omelet. “You know what? I couldn’t find any book about what a young person with Alzheimer’s should do to keep the mind stimulated, to slow the progress of Alzheimer’s. We wanted some type of guidance on how someone with Alzheimer’s can live well, and long, after the diagnosis.”
Cheryl, a University of Arizona graduate with a degree in psychology, contacted experts across the country and learned more about a disease that was discovered in 1906. (Five million Americans today have Alzheimer’s, and an estimated 500,000 will be diagnosed with it this year; only four percent of Alzheimer’s patients are younger than 65.) She parked herself in front of a computer and searched for information she had not gathered in books. The Lincolnwood native and Niles West High School graduate clicked, clicked, clicked. She read, read, read.
The woman who had sought experts became an expert.
Early this fall, Cheryl Levin-Folio will become a self-published author with the launch of The 24-Hour Rule: Living with Alzheimer’s (to be available at amazon.com).
“Our hope is the book will be a rich resource for newly diagnosed patients and a helpful, how-to-guide for family members, new caregivers and friends who want and need to understand the illness,” Cheryl writes on the couple’s touching website, alzheimers-everydayliving.com. “On every page are practical strategies you can implement at home, away from where you live, at friends’ houses, just about anywhere.”
Every morning Michael and Cheryl nestle on a couch at home and view a 22-minute memory montage video. There’s Michael as a young baseball player. There’s one cousin, then another, wishing Michael a Happy Birthday. There’s footage of Michael and Cheryl’s wedding. Michael spends time with a buddy, Lee, three times a week. They work out together, bike together, play tennis and golf together. Alzheimer’s wasn’t a death sentence. More like a let’s-tackle-this challenge. Now. And hard. And daily. Michael reads sweet reminders from Cheryl before he gets ready to face each day. “Brush your pearly whites,” the list begins. “Put on your cologne. Dress cute.” She does not sign her name at the bottom of the sheet. She pens three words instead: “I love you.”
Wednesdays are art therapy days for Michael, Fridays music therapy days. Michael plays the drums on Fridays.
“His verbal abilities get stronger after his music therapy sessions,” Cheryl says, adding her husband is also a participant in a clinical trial conducted by the University of South Florida Health Byrd Alzheimer’s Institute in Tampa, Florida. “Routine enhances our life and our environment. Routine is good. Structure is good. Interfering a routine, I learned, allows the illness to take control.
“Our message to people with Alzheimer’s and those who know them and care for them is, ‘Don’t be afraid of an Alzheimer’s diagnosis.’ There’s no need to hide it, either. At first I was scared, yes, because I didn’t want to lose a strength in my life, the man who brings out the best in me. We made the decision to fight this, and that’s what we’ve been doing.”
The husband and wife sometimes play tennis. The wife smacks a ball to her husband’s forehand. It comes back. The wife smacks a ball to her husband’s backhand. It comes back. The rally continues, Cheryl looking for an opportunity to end the point, Michael looking to extend it.
“He gets everything back,” Cheryl says. “It’s annoying.”
Cheryl turns to her right and looks right at Michael. She squeezes his left hand. They grin at the same time.
Combatants in tennis, teammates vs. Alzheimer’s.