When Sean Durbin noticed he was struggling to find the right words during conversations, he knew something was off. The once-boisterous extrovert who thrived at the center of family gatherings found himself needing to step back from the noise and activity he’d always loved. This experience was the start of their FTD journey.

“I was having a hard time getting my words out,” Durbin recalled in a recent article on the WKYC website. The 57-year-old from near Cleveland, OH, had always been comfortable expressing himself, but suddenly the words wouldn’t come.

His wife, Lisa Ihnat-Durbin, noticed other shifts too. When Durbin came to her and said he thought something was wrong, they began the search for answers together.

Together, they faced challenges, learning more about the FTD journey and what it meant for their future.

That journey led through a variety of possibilities–sleep disorders, autoimmune issues, and endocrine problems–before a Cleveland Clinic neurologist, Dr. Jagan Pillai, made the diagnosis in March 2024. Durbin had FTD.

“I was devastated,” Durbin said. Ihnat-Durbin’s response was panic, followed by a single question to Dr. Pillai: What do we do now?

Making Sense of an Unfamiliar Diagnosis

When the couple tried to share Durbin’s diagnosis with family and friends, they were met with blank stares. People had heard of Alzheimer’s disease, but FTD? Very few were familiar with it. Then Ihnat-Durbin’s sister made a connection. Wasn’t that the same condition Bruce Willis has?

Suddenly, the Durbins had a reference point. “It became a way for us to start sharing this diagnosis with our family and friends,” Ihnat-Durbin explained. “It gave us something to say, something that people could relate to, that people would remember.”

The couple began directing people to the AFTD website for more information, transforming difficult conversations into opportunities for education.

Living In the Present

Since the diagnosis, the Durbins have made significant life changes. They sold their house and moved into a condo. Ihnat-Durbin created a virtual calendar where family and friends can sign up for shifts to help care for Sean.

Most importantly, as Ihnat-Durbin described it, they’re “trying to live life in fast forward and get in everything that we want to get in.”

“I used to be Sean 1.0, now I’m Sean 2.0,” Durbin said in a recent article on the Cleveland Clinic website. It’s a phrase that captures the reality that while he’s changed, he’s still fundamentally himself.

The couple has learned what works for this new version of Sean Durbin. Conversations are easier with just two people at a time. On a recent trip to Punta Cana with friends, they chose the quiet pool over the party pool—and couldn’t have been happier.

The Durbins are deeply appreciative of the attention garnered by Bruce Willis’ FTD journey. As Ihnat-Durbin said, “We’re very grateful [they chose to use] their spotlight. We’re hoping it helps research and helps getting awareness out there.”

Right now, Sean remains able to enjoy the things he’s always loved, even if they look a little different. He’s still himself—just Sean 2.0.

Further reading:

• Read the articles from WKYC and from the Cleveland Clinic.
• Explore AFTD resources to help with diagnosis.
• Get the latest on the Willis family’s FTD journey.