Couple sets out on public fight against Alzheimer’s
BY KAREN BERKOWITZ firstname.lastname@example.org September 9, 2013 7:26PM
Michael Folio, 57, and his wife Cheryl are participating in the Walk to End Alzheimer's. Michael was recently diagnosed with the disease. | Brian O'Mahoney/For Sun-Times Media
Updated: October 11, 2013 6:14AM
“We’ve never run away from anything,” said Highland Park resident Cheryl Levin-Folio, reiterating a point she’s been making with her husband, Michael Folio.
At age 56, Michael Folio was diagnosed with early-onset Alzheimer’s Disease. Only about 4 percent of Alzheimer’s patients are younger than 65.
In the face of the scary diagnosis, the couple decided they could inspire others by confronting the disease in a public way.
On Sept. 21, the Folios will speak at the start of the North Shore Walk to End Alzheimer’s in Glenview’s Gallery Park. They’ve also invited friends and business associates from around the country to join them for the walk, which is sponsored by the Alzheimer’s Association.
While Michael Folio initially said, “Now, everyone will know I’m nuts,” his wife stressed the importance of including others so they understand what is happening — “that you are not crazy.”
“Michael brings out the best in me, but he brings out the best in everyone,” said Levin-Folio, a real estate executive with JP Morgan Chase who met her future husband 11 years ago when he spoke at a conference.
“He has shaped so many careers around the country,” she continued. “When I started to send the (Walk) letter out, it was amazing how many people picked up the phone and said, ‘What can we do to help? We love Michael.’”
Folio first showed signs of memory lapses several years ago. At the time, doctors discovered significant arterial blockages, so that seemed a likely explanation. Indeed, the memory issues improved once the blockages were corrected with two stents.
Shortly after the couple married last September, however, Folio experienced confusion in their Highland Park home that went beyond mere forgetfulness.
While some may excuse lapses of memory as a normal part of aging and put off seeing a neurologist when signs of dementia appear, that’s hasn’t been the Folio way.
After the worrisome episode last fall, they elected to pay for an expensive imaging test that was not covered by insurance in order “to be in the know.”
Their concierge internist referred them to NorthShore University HealthSystem neurologist Dr. Chad Yucus, who recommended a relatively new Amyvid imaging scan that shows plaques in the brain, as might be seen in someone with Alzheimer’s Disease.
“I said, ‘No matter what we find out, it doesn’t matter. We are just going to be in the know,’” Cheryl Levin-Folio recalled. “Michael said, ‘What if I don’t want to be in the know?’ I said, ‘We have never been people who live in the dark. This is not a scarlet letter. This is going to be our life.’”
As Folio was digesting the news and going through the grieving process, he told his wife, “You didn’t sign up for this.”
“You think there is a rule book that you sign up for?” she replied. “I am not going anywhere. We are going to do this together.”
At the time they met, Folio had just recently spun off a division of Home Depot into a separate company, Corporate Property Dispositions. For a time, they commuted back and forth between Chicago and Atlanta.
Folio retired from the company upon receiving the diagnosis. He’s currently taking two medications, Namenda and Aricept, that help mask the symptoms of Alzheimer’s and maintain the status quo.
Levin-Folio has immersed herself in the literature and makes sure they eat right, work together on stimulating puzzles and keep up their exercise regimen.
“We have a wonderful life,” she said, noting he plays golf and tennis and is taking bridge lessons.
Folio also enjoys spending time at their condominium on the water in Sarasota, Fla.
To compensate for lost memory, Levin-Folio uses sticky-notes as routine reminders, and has created laminated cards with important numbers, like their Highland Park zip code — a question often asked when making a credit card purchase.
“There are moments he gets upset, and there are moments that I get emotional, too,” said Levin-Folio, who firmly believes that knowledge is empowering. “The more knowledge we have, the more help we get, the better we are able to live our lives with this change coming upon us.”
While an estimated 5.2 million Americans have Alzheimer’s Disease, only about 200,000 are younger than 65. So far, more than 200 walkers and 48 teams are registered to participate in the North Shore Walk to End Alzheimer’s, and more than $52,000 has been raised toward the goal of $75,000. For information, visit www.alz.org.