Younger onset Alzheimer's patients stay active
Keeping busy 'gives you a cognitive advantage,' physician says
Cindy Kolick, who suffers from younger onset dementia, performs a solo during the Carillon Community Chorus' rehearsal of “Broadway Gold” at the Carillon community clubhouse in Plainfield on Sept. 8. (Corey R. Minkanic/Chicago Tribune)
At age 52, she was diagnosed with younger onset Alzheimer's disease six years ago, nearly a decade after the first symptoms surfaced while she was doing summer stock in New England. "I was doing the play 'Corpse' … I went to make my entrance and nothing looked familiar," recalled Kolick.
But despite the devastating diagnosis, she remains active singing in the chorus at her Plainfield residential development for older adults, where she and her husband now live. Her whirlwind daily schedule –– singing, exercising, researching Alzheimer's online and participating in drug studies –– is a testament to the changing face of the disease, especially among those diagnosed before age 65.
Alzheimer's can progress at different rates, with many younger onset patients remaining engaged and enthusiastic for years after the diagnosis, experts say. That message got a major boost when Pat Summitt, 59, the University of Tennessee's legendary women's basketball coach, recently announced that she had symptoms of Alzheimer's but pledged to continue coaching.
"I love it that people like (Summitt) are out there saying they have it," said Nicole Batsch, director of early stage services at the Alzheimer's Association-Greater Illinois Chapter in Chicago, supporting patients going through the first phase of the disease. "It will help reduce the stigma. For patients, it will help them recognize symptoms."
Before experiencing symptoms, many patients with younger onset dementia had expected to continue working well into their 60s. But unlike Summitt, most patients have usually lost their jobs or had to retire early because of their symptoms by the time they are diagnosed, said Dr. Diana Kerwin, geriatric physician and assistant professor at Northwestern University's Feinberg School of Medicine.
Still, many with younger onset dementia are determined to remain active in other ways for as long as possible, Kerwin said. Keeping busy, she tells patients, "gives you a cognitive advantage."
"I do my share of crying because of the frustration," said Kolick. "But I'm grateful for what I have. I'm still very active and have a great support system." She has a solo, "You Can Always Count on Me," from the musical "City of Angels," in the chorus' current show.
Younger onset Alzheimer's is diagnosed in those younger than age 65 and strikes 250,000 Americans a year, according to the Alzheimer's Association. "More people are being diagnosed with younger onset," Kerwin said. "Typically, they're in their 50s, but we see them as young as their 30s and 40s."
The first hurdle is often a proper diagnosis, a process of elimination that can take years as doctors tell patients they are too young to have Alzheimer's. Pati Hoffman, 57, of Carol Stream, had to give up the corporate marketing job she loved after Alzheimer's struck her at age 55, but only after an excruciating period of medical tests and ambiguous findings.
She went to so many doctors and had so many tests that her diagnosis was a relief, she said. "They kept telling me it was just stress," said Hoffman, who is now an adviser for the Greater Illinois Chapter of the Alzheimer's Association. "So at least I finally had an answer."
By speaking at events and sharing her struggle, Hoffman helps others who reach out to the association. Hoffman keeps physically active by working at the local food bank and by walking. "I tried yoga, but I'm from the Jazzercise days, so I just couldn't go there," she said, laughing.
Humor helps, said Hoffman. "I need a GPS to drive, but I always did. I was never good with directions," she said. "I have a friend in a support group who had to give up driving after she got lost, so we joke about it. I tell her, 'We're getting together, but you are not picking me up!'"
Tom Swenson, 65, of Naperville, copes with the disease by staying busy, filling his calendar with exercising, traveling and volunteering commitments.
"The more I do, the less I think about the disease," said Swenson, who was diagnosed five years ago. "Alzheimer's is not going to stop me."
A retired school business manager, Swenson has a "bucket list" that sends him and his wife, Mary, on the road. "I wanted to climb the Sydney Harbour Bridge, so we went to Australia," he said. "We've climbed mountains in Rwanda to see gorillas and walked with grizzly bears in Alaska."
Like Hoffman and the others, Jon Fabbri, 53, who was diagnosed with younger onset Alzheimer's three years ago, credits support groups for linking him with other patients and their families.
"Without support groups, this can be an isolating disease," said Danielle Arends, a nurse practitioner who co-runs Rush University Medical Center's groups for younger onset patients, their caregivers, their adult children and their younger children. "They learn from each other how to get a diagnosis and how to stay active even if you can't drive anymore. Friends and peers from work may not call anymore, but the others in the support group become their new friends."
In Fabbri's case, the onset of symptoms was not a complete surprise. He watched two of his four siblings suffer through the disease so he knew what was wrong when his manufacturing job became a jigsaw puzzle he could not solve. "The boss asked me three times why I hadn't done something," he recalled. "I knew what was happening."
Now, he minds his family's Carol Stream house while his wife, Jan, works. "I cut the grass, do the housework, walk the dogs, do the errands," said Jon, who is still able to drive. He is Mr. Fix-It at his house and his grown daughters' homes.
Kolick gave up driving several years ago but keeps her car registered and insured. She also keeps her Actors' Equity card with her at all times.
"Everything happens for a reason. We don't know it at the time," Kolick said. "My calling was theater, but as it turns out, I now know I have to share my experience with others afflicted with Alzheimer's as others have done for me."