Donald MacIntosh had a 25-year career working as an attorney for the Canadian Department of Justice. Smart and with a great memory, he could argue a case referring to just a few pieces of paper. But nowadays, the 69-year-old forgets how to make coffee and can’t remember what he had for lunch.
Shortly after he retired five years ago, MacIntosh, who lives in Toronto, noticed he was having memory problems. He went to his personal doctor, followed by a few specialists. On a cognition test with 10 questions, he was only able to answer two correctly.
After additional tests, doctors diagnosed him with early-onset Alzheimer’s disease (AD), a form of dementia that affects memory, thinking, and behavior. The National Institute on Aging says more than 6 million Americans, most over age 65, may have dementia caused by AD.
MacIntosh couldn’t believe the diagnosis.
“I was gobsmacked,” he says, noting his AD might be inherited. His mother lived with it for 14 years before she died, and his father had a gene linked to the disease as well.
While he still retains long-term memories, his short-term memory fades fast. Nowadays, if he wants to water his plants, he has to turn on a light as a reminder to turn off the hose. Minutes after he starts watching a TV show, he can’t recall what he’s watching.
That’s why he was so excited to participate in a clinical trial for a drug being tested to slow the progress of the disease.
“It is a privilege,” says MacIntosh. “Not everyone is in such a trial because either they don’t know about it or they don’t meet the requirements.”
He started the clinical trial in 2016 but recently had to stop participating after he experienced some side effects, including three instances of temporary brain swelling known as ARIA-E.
He credits his wife, Jasmin, with helping him stay as healthy as possible. The couple have been married for 12 years and he’s a stepfather to her three children.
“He is so passionate about getting better. He is very disciplined. In fact, he’s more disciplined now than he’s ever been,” Jasmin says. “He gets up, works out, and reads. He gets involved in discussions with friends. He’s very positive about the whole thing, which is wonderful.”
Prior to the pandemic, the couple traveled a lot, including cruising a few times a year and going to the theater. MacIntosh still enjoys gardening, socializing with friends, and reading books. He exercises daily, eats healthy, and is focused on maximizing his brain health and cognition.
Jasmin MacIntosh encourages other caregivers to show, “lots of love, support, and encouragement,” to their loved ones with AD.
Donald MacIntosh does AD awareness outreach with the Center for Information and Study on Clinical Research Participation (CISCRP), a nonprofit dedicated to educating the public, patients, and medical communities about clinical research.
“People who are afflicted with Alzheimer’s and their loved ones are desperately waiting for a drug to come along that not only is efficacious from a safety point of view, but that also has an effectiveness in terms of slowing down the progression of disease,” MacIntosh says.
MacIntosh, who remains optimistic, is looking forward to potentially participating in other clinical trials in the future. He encourages other patients to participate, too, explaining there are many benefits including regular exams, free medication, and MRIs. He has no regrets about participating in a clinical trial. “Even if it doesn’t benefit me personally, it will benefit other people in the future.”