Brian Kursonis was working as a financial analyst managing 401ks in Charlotte, North Carolina, last year when things started to seem fuzzy. He was at his desk reviewing spreadsheets when he thought maybe he’d fallen asleep.
“I was blanking out. I’d be looking at the computer screen and all of a sudden I’d be like, ‘What just happened?’ ” Kursonis tells PEOPLE
The devoted father was an avid runner and just 55 years old when doctors officially diagnosed him with early-onset Alzheimer’s.
Now 56, he has been told he has anywhere from eight to 12 years to live.
“The things that bother me the most about this is I have five kids… and I don’t think I’ll ever get to know grandkids. That’s pretty hard,” he says.
Alzheimer’s is the sixth-leading cause of death in the United States and affects more than 5 million Americans, according to the Alzheimer’s Association.
Early-onset Alzheimer’s is a rare form of dementia that strikes people younger than age 65. Of all the people who have Alzheimer’s disease, about 5 percent develop symptoms before age 65.
Symptoms can include memory loss, difficulty planning and solving problems, difficultly completing familiar tasks, vision loss, misplacing items often and difficulty finding the right words. Getting a diagnosis involves a medical exam and possibly cognitive tests, a neurological exam and/or brain imaging by a doctor who specializes in Alzheimer’s disease.
Kursonis paints a vivid but devastating picture about the disease that still has no known cure.
He says he has to make multiple trips to his car before he remembers everything he needs and he leaves himself notes all the time – notes that he forgets to read.
“Just the day-to-day is frustrating,” he tells PEOPLE. “I can’t have a career anymore. I can’t do what I used to be able to on so many levels.”
Kursonis has joined PhRMA’s (The Pharmaceutical Research and Manufacturers of America) national campaign to raise awareness for cutting-edge Alzheimer’s research featuring his story and that of a scientist researching new treatments for Alzheimer’s.
“Brian embodies the hope and commitment of patients facing an illness who are helping scientists discover new treatments and cures. His passion for the cause of research, and his tireless advocacy for Alzheimer’s patients make Brian an ideal voice, and face, in the Together series,” says PhRMA’s spokesperson, Holly Campbell.
Even before he was handpicked to help people understand the impacts of Alzheimer’s he was already helping people.
A former counselor, he started his own website to help fellow patients cope with their diagnosis.
“When I got the diagnosis, I went though the five stages of grief and I came out of that going, ‘I can spend my short life just waiting to die or I could live it fulfilled,’ ” he says.
He realized he could find that fulfillment from helping others.
Because of Alzheimer’s, he can no longer hold a job, so he considers this his work now. He says he gets emails from caregivers, from others like him and from people who just want to send an encouraging word.
“This has become not just my passion, but it’s also what helps me survive,” he says.
His kids are proud of the way he’s channeling his energy, but worry about what’s to come.
“Knowing that he probably won’t be here in a couple more years, knowing that he won’t see me get married or have kids, that’s really difficult,” his 18-year-old daughter, Molly Murdock, tells PEOPLE.
Kursonis says he is hopeful there will be a cure in his lifetime.
“Up until just recently, my hope wasn’t for my future, it was for finding a cure for others, but there are things going on now that make me think I might be around long enough. So I’m starting to have a hope for my future.”