Living with the unknowns of Alzheimer’s disease

Jim Butler thrives on knowledge. The 72-year-old knows that when he wakes, he will read the daily paper over a cup of steaming coffee and a bowl of cereal. He knows that later, he’ll watch the news and traverse the city by bike, watching the world stream by despite an ostensible stillness created by the COVID-19 pandemic. What he doesn’t know is how and when his mind and body will deteriorate as a result of his Alzheimer’s disease – nor if he will know when it happens.

Jim can remember how his father’s Alzheimer’s disease progressed as a frame of reference. But he knows that it’s impossible to predict exactly how the disease will affect himself. “I hope I get real lucky and I don’t slip anymore,” Jim says. “My guess is if this thing gets worse, I’m not going to be cognizant of a lot of it.”

Amidst the weight of this looming unknown, Jim knows he can face each day toward an uncertain fate because his family will help him navigate the journey and because he is doing what he can to make a difference in Alzheimer’s research.

Jim was diagnosed with Alzheimer’s disease in 2016 after repeated instances of confusion and struggling with daily tasks prompted him to see a doctor. For him and his wife, Lisa Butler, the news was devastating. “We thought this was the beginning of the end,” he says.

Since his diagnosis, Jim says he has found peace and learned to live with the “hiccups,” or the dozens of memory lapses he experiences daily. He smiles at them and focuses on the positives – headlined by his family. “I have a lot to cherish about my life and a lot to enjoy in my life,” Jim says. “There’s nothing in my life more important than family and friends.”

Lisa, a central figure in Jim’s familial support system, bolsters Jim daily by ensuring he has opportunities to be active and engaged in his retirement from a decades-long career in drug rehabilitation services – despite she herself working full time six days a week. Every morning, she wakes up thinking of suggestions to keep him occupied so he doesn’t dwell on his diagnosis, a strategy that has been complicated by COVID-19 lockdowns. “I just try and help him if I see him kind of bored,” Lisa says. “A lot of this time, he has been bored because there’s only so much you can do.”

Jim also finds support in other immediate and extended family members. He smiles over memories he hopes to always recall, of flying in the two-seater plane he and his son built and spending so much time with his sister.

Despite hurdles in Alzheimer’s research, scientists continue to examine potential paths toward disease modification. “Alzheimer’s is a complex disease riddled with unknowns,” says Dr. Olga Sánchez-Soliño, global neuroscience therapeutic area head, global medical affairs, AbbVie. “We need to keep on trying. We must be resilient and have hope. Such a big impact in Alzheimer’s is yet to come.”

Dr. Sánchez-Soliño also points to the critical role patients play in the search for potential treatments. “We need to work together with investigators and count on the incredible generosity of patients who are willing to participate in clinical trials,” Dr. Sánchez-Soliño says. “We are very grateful to these patients who contribute their time and energy to advance research.”

For Jim, participating in clinical trials is the least he can do to help researchers in the fight for treatments. “I really appreciate their efforts to try to find a cure,” Jim says. “If my simple job is to just go on in there and take some cognitive tests and get infusions every month, [I] want to contribute.”

In addition to leaning on family, Jim invests in each day as much as he can – at home with chores and in society with politics – as a way to cope with his diagnosis. Participating in Alzheimer’s advocacy through patient groups and clinical trials also gives Jim a sense of purpose and pride. “It’s like being part of the team,” Jim says. “If I can put a helpful face to someone who’s covering this ground, that’s making a big contribution.”

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David Freundel
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