MANKATO — It was like being thrown into a boxing ring with an opponent they didn’t know.
Jim and Judy Roe, married since 1965 and still very much in love, were about to face the toughest challenge of their marriage. And this kind of challenge rarely has a happy ending.
Judy’s doctor, Julie Gerndt of the Mankato Clinic, had just diagnosed her with Lewy body dementia, a form of dementia characterized by unusual proteins in the brain.
The proteins, or Lewy bodies, affect the brain in a way that, while not fully understood, produces motor dysfunction, fluctuation cognition, vivid visual and auditory hallucinations, and dementia.
“In all my 40 years of ministry,” Jim said, “I’d never heard of Lewy body.”
It’s not that rare. After Alzheimer’s disease, it’s the second-leading cause of dementia. In some ways, it’s not as cruel as Alzheimer’s, which robs victims of short-term memory. But in other ways, it can be worse. The hallucinations, both visual and auditory, can be crippling.
Judy not only sees things that aren’t there. She also relives horrific moments of her life, such as the time she reacted as if she’d just learned her mother had died, or a more recent case where she was convinced something horrible had happened to the grandchildren.
Getting a handle on the her disease was important. But it didn’t stop Jim and Judy from living. And for Jim, living means getting outdoors. They still went for vacations, still tried to enjoy the outdoors.
Even as they lived life, though, the hallucinations grew worse.
“We were lucky,” Jim said. “The dementia didn’t show up for four years, allowing us time to travel.”
Jim estimates that in 2008, Judy was seeing hallucinations about 20 percent of the time. By 2009, 30 percent. By 2010, 50 percent. Today, it’s nearly constant.