Lonni Schicker stopped in her tracks. She had just left the library on the Minnesota college campus where she taught health administration and was headed back to her office. But she couldn’t remember where it was.
“My office was in the next building, but I walked almost the entire campus and I finally called my son,” she says. He told her which building it was in; she followed signs to get there.
The incident was even more worrisome in light of what had happened the previous week. Schicker was giving a speech out of town and, right in the middle of it, her mind went blank. “The words were coming out of my mouth and then all of a sudden, nothing,” she says. She forgot not only the content of her talk, but where she was.
Doctors diagnosed Schicker in July 2014 with mild cognitive impairment, or MCI. She was 59 years old. The diagnosis was later revised to the more serious vascular dementia.
A Stunning Diagnosis
Like many faced with dementia, Schicker was forced to process what would inevitably be major changes in her life. She quit her university job that fall. She moved back to her hometown to live with her son. When she drives, she uses navigation — even when going to the grocery store.
At the same time, Schicker didn’t stop living her life. On the contrary, she has remained active and busy as an advocate for others with the disease. She was one of 10 Americans appointed last year to the national Early-Stage Advisory Group of the Alzheimer’s Association. The group, which consists of members from across the country, works to raise awareness of early-stage Alzheimer’s and other dementias, and advocates for more research and support programs, among other things.
“I could see that there was clearly a stigma attached to having dementia and that nobody wants to believe that you have it, Schicker says. “I want people to understand that there are stages. That because someone has dementia doesn’t mean that they are completely confused or unable to function.”
Schicker and the other advisors play a critical role in educating others about Alzheimer’s — not only its challenges, but how people diagnosed with it can live their best lives, said Monica Moreno, senior director, care and support, for the Alzheimer’s Association. “By sharing their stories, we gain a better understanding of their experience. These insights help us enhance the care and support services we offer, allowing us to respond in a much more informed way. Our advisors are passionate about giving a face and a voice to people living with Alzheimer’s.”
Early-Onset Alzheimer’s and Other Dementias
Approximately 200,000 of the 5.5 million people in the United States with Alzheimer’s are diagnosed before age 65, according to the Alzheimer’s Association. These “early-onset” cases can occur in as early as one’s 30s, though that is rare.
Other forms of dementia, including dementia with Lewy bodies, frontotemporal dementia (FTD) and vascular dementia, can also begin before age 65.
For Alzheimer’s, which makes up 60 to 80 percent of all dementias, the life expectancy is eight to 10 years — though it can extend up to 20 years. There is no cure.
Those who are diagnosed at relatively young ages say they face a common reaction from family and friends: “You don’t look like you have dementia!” Their youth belies the stereotypical image of someone with Alzheimer’s, perhaps in their 70s or 80s, sitting motionless in a wheelchair and staring off into space.
That can be a source of frustration, says Mike Belleville, 56, of Bellingham, Mass. He was diagnosed four years ago, at 52, and also serves on the Early-Stage Advisory Group.
“Some diseases, when a person’s going through chemo [for instance], and you can look at them and tell that they’re going through something that’s obviously not pleasant,” he says. But with Alzheimer’s, “they don’t see what my daily challenges are… simple tasks that I used to be able to do in minutes that I try to do for an hour and can’t do.”
Such as replacing hinges on his kitchen cabinet doors, which he recently struggled with, says Belleville, a former telecommunications technician with Verizon. “That’s not typical of the type of person I was before.”
Lack of Understanding
Chuck McClatchy, another advocate and member of the advisory group, feels the same frustration. When someone says, “You don’t look or act like you have dementia,” he wants to say, “Number one, you don’t live with me, and you don’t go shopping with me and you don’t try to pay my bills!”
But, the 64-year-old Albuquerque resident continues, “I don’t take it seriously. I’m too busy enjoying life to take that kind of thing seriously and to really get offended. I just take it as [meaning] they really don’t understand, and hopefully they will understand before this disease affects them.”
Schicker describes it another way: “If you told your friend or your family that you just found out you had cancer, they wouldn’t question [it]. They would be concerned and they would be sympathetic. They would want to know what they could do for you. But the response I got over and over was, ‘Oh, there’s nothing wrong with you! I forget things, too.’ I felt very unsupported.”
Trouble with Diagnosis
Even some medical professionals fail to recognize the symptoms of Alzheimer’s or other dementias when they occur in people under 65, several advocates say. Many individuals go for years from one doctor to the next seeking an answer to troubling symptoms.
Jeff Borghoff of Forked River, N.J., was one such person. Diagnosed at 51 with early-onset Alzheimer’s, the software developer began noticing that things were going wrong several years earlier. His face started twitching regularly; he attributed that to stress and anxiety. He also began having memory problems.
“I was originally diagnosed with temporal lobe epilepsy, which ended up being completely wrong,” he says. “Unfortunately for me, I was being overdosed with epileptic medication, and so that made my symptoms worse.”
Finally, a neurologist told Borghoff he had no idea what was going on with him. Borghoff underwent a spinal tap and was tested for Creutzfeldt-Jakob disease (which is extremely rare) and Huntington’s disease. Doctors briefly “mentioned” Alzheimer’s, since Borghoff had a family history of it, “but they never really wanted to go down that road, because I was 51,” he says.
The final straw: a doctor who suggested he read a book on meditation.
“My wife and I just looked at each other at this point,” Borghoff says. It wasn’t until they sought help at New York-Presbyterian/Columbia University Medical Center that the answer came: early-onset Alzheimer’s. That was a year ago. He, too, now volunteers with the advisory group.
A Life with Meaning
McClatchy says his early reaction to his diagnosis was horror, anger, sadness and worry. “Every image of what happens in late-term Alzheimer’s goes through your head,” he says. But through support from the Alzheimer’s Association and therapy, his perspective changed.
“It was time to kind of pick myself up, dust off and continue on. I took all of those feelings that I had inside of me and focused them on something good,” he says. “Talking to people and getting the word out about Alzheimer’s was, in a way, therapeutic to me.” McClatchy now travels the country speaking at conferences and conventions.
He also joined a clinical trial — which he strongly urges others to do. The more people get involved in research, the sooner treatment and a cure will be found, he says.
Schicker, the former professor, represents people with Alzheimer’s locally as well as nationally, and says the work is “so meaningful.” She tells groups about what it’s like having the disease and, in particular, what it has done to her financially. “In a three-year period, it completely drained all my funds, all of my assets,” she says. “It’s a reality, and if it helps to educate other people, then it’s worth it.”
‘I Have a Voice’
One result of Belleville’s advocacy work was a mention in Sen. Elizabeth Warren’s book, This Fight Is Our Fight, published in April. Belleville had met the Massachusetts Democrat during an Alzheimer’s advocacy forum in Washington, D.C. “I can’t honestly tell you what I said to her, exactly,” but it brought Warren to tears, he says. She called him later to ask if she could include his story in the book.
Belleville doesn’t care about the personal notoriety, he says. “It’s really more about spreading awareness about the disease.” What he most wants others to know? People with dementia should not be defined by their disease. “They’re still the same person they used to be,” Belleville says.
Doing this work, he notes, made him realize he still has a purpose. “I can still enjoy the things I did before, I can still learn new things. But more importantly, I have a voice… I plan on using it for as long as I can.”
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