“It’s been working on me for 20 years,” says Jeff, an APBD patient who was fully employed and physically active despite increasingly troublesome symptoms. He was a runner, too. But then he began noticing that he was getting up from bed every hour of the night to go to the bathroom. “I thought it was from all the hydrating that I did when I was running.” About six years ago, however, a significant event occurred. Then at age 60, Jeff fell while in the shower and wasn’t able to get up. He found himself in a local hospital where the staff was unable to determine what had happened to him.

That began a journey which next led to the University of Michigan Hospital and then, ultimately, to Dr. Joseph Matsumoto, Professor Emeritus, Department of Neurology at the Mayo Clinic in Rochester, Minnesota. Dr. Matsumoto and his team inquired about Jeff’s Ashkenazi Jewish background and proceeded with a sweat test, upper GI series and endoscopy. They considered Whipple disease and celiac disease but ruled them out. All told, it was five months from the onset of severe symptoms until the doctors landed on the correct diagnosis of APBD.

Jeff in his neighborhood garden

At this point, Jeff can cook for himself, although he admits he finds it easier when his wife Beth prepares meals. Beth also does the grocery shopping, laundry and general ‘around town’ chores. Although he is now using a walker, Jeff continues to manage a rescue shelter for cats, and he is still able to climb stairs. “I know that when I am by myself, I should do as much for myself as possible. I don’t want to be dependent on others.”

Along with his personal challenges, Jeff has concern for his brother who was also diagnosed with APBD.  It is, obviously, hard for Jeff to see his sibling struggle. 

Jeff is deeply appreciative of the work being done by the APBD Research Foundation and augments the foundation’s efforts with his own disease awareness campaign. He hands out brochures to physicians, and he communicates broadly to members of his synagogue. He stays in close contact with a neurologist in the belief that one day, when there is a cure, it will be the neurologists who propel their APBD patients to take advantage of promising opportunities.

“I recognize that medical care is limited,” Jeff sums up, “but at least I can still travel, and I can still volunteer. I won’t let this keep me down.”

Editor’s Note: Special thanks to Bob Dorsky for authoring Jeff’s story.

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