
24/09/2025
Diagnosed with frontotemporal dementia or FTD at 57, Sean Durbin is learning how to navigate life with the progressive brain disease alongside his wife, Lisa.
“I used to be Sean 1.0, now I'm Sean 2.0,” says the loving husband and father from Mentor, Ohio.
Before his diagnosis, Sean struggled with finding the right words during conversations at times and experienced moments of distraction. After explaining his symptoms to Lisa and undergoing testing, neurologist Dr. Jagan Pillai diagnosed Sean with FTD, which refers to a group of diseases that affect the brain's frontal and temporal lobes.
“Essentially, FTD describes a syndrome characterized by changes in mood, thinking, behavior, personality, judgment and the ability to solve complex problems,” says Sean’s certified nurse practitioner, Matthew Zgodinski.
To help others grasp what Sean's now facing, the couple referenced Bruce Willis’s FTD diagnosis. Highlighted in an Innovation in Aging article, Dr. Pillai and colleagues found the news coverage of Bruce’s diagnosis raised awareness and highlighted the need for public education about the disease.
“If you say Alzheimer's, people know immediately what that is. If you say FTD, people give you a blank stare. It was so helpful to follow up and say it's the same thing Bruce Willis has,” says Lisa.
While there are currently no available treatments, an early diagnosis is important as it helped Sean and his family make plans for the future and connect with resources like social worker Grace Knorr.
“We’re grateful for Grace and our network of support because otherwise we’d be trying to figure all this out on our own,” says Lisa.
Sean and Lisa have since found life more manageable by starting each day with a plan and using a calendar to stay organized. They're continuing to learn how to navigate life with “Sean 2.0.”
“We had our wedding anniversary recently, and Sean said, ‘I think we're stronger than ever together,’” Lisa recalls. “I guess sometimes adversity helps you out. I'm grateful every day that I have and every moment that I have with Sean, and that hasn't changed.”