This article was originally written by Michael Lee Simpson for SWNS — the U.K.’s largest independent news agency, providing globally relevant original, verified, and engaging content to the world’s leading media outlets.
“Loud voice, fun stories, just always laughing and smiling” is how Lisa Ihnat-Durbin described her husband, Sean Durbin — but that changed when he was diagnosed with a form of frontotemporal dementia: a group of brain disorders that impact language, behavior, and comprehension. “I noticed at times I couldn’t quite get my words out,” Sean, 58, said in a video shared by the Cleveland Clinic, adding, “That’s when I first noticed it, that I was struggling.”
During their journey grappling with Sean’s diagnosis, the couple found comfort in the story of Bruce Willis, who was diagnosed with frontotemporal dementia, or FTD, in 2023. And now, they’re teaming up with the actor’s wife, Emma Heming Willis, to help spread awareness and expand resources for families facing the brain disease.
Originally from Mentor, Ohio, Sean found his words slipping away mid-sentence last year, at which point Lisa encouraged him to see a doctor. That led to Cleveland Clinic neurologist Jagain Pillai diagnosing him with FTD. “I just looked at him and I said, ‘I don’t know what to do,’” Lisa, 50, shared in the video. “‘What do I do? What do we do?’”
To explain the diagnosis to others, which has been one of the hardest parts for Sean and Lisa, the couple found themselves referencing the condition’s famous patient. “It was just easier to say, ‘It’s the same thing Bruce Willis has,’” Lisa explained in the video. “Then people could ask questions and start to understand.”
They’re not the only ones the 70-year-old Die Hard star has unintentionally aided: A 2023 journal article co-authored by Dr. Pillai found that the extensive media coverage Bruce’s diagnosis received “helped bring much-needed attention to this disease,” the paper asserts.
And when Emma, 47, learned that Sean and Lisa were sharing their story, she recognized the courage it takes to turn personal hardship into public advocacy.
“You have this sort of story in your mind of how your life is going to play out, and then to see it completely ripped from you is just heartbreaking,” Emma said in the video. “You have to sort of figure out your new chapter of your life. When you educate yourself and understand the disease, you can better support yourself as well as your person.”
Earlier this month, after Bruce moved into a separate home close to their shared residence, Emma went on CBS Mornings to discuss her own experience as a caregiver. “I think for each caregiving journey is our own, each care plan is their own,” she said. “You have to be ready to sort of be nimble and be able to pivot. But most importantly to do what is the safest for your person and for your family.”
In the Cleveland Clinic video, Lisa described “advocacy” as a “huge part” of bringing greater awareness to FTD. “Thank you for stepping into those shoes,” she told Emma, referencing the latter’s openness in sharing her journey with the public.
Although there are currently no treatments for FTD, doctors stress the importance of early diagnosis. Identifying the disease sooner gives families time to plan ahead, access support services, and even participate in clinical trials. Most importantly, it helps patients and loved ones make sense of the often-confusing changes they’re experiencing.
“Having a clear diagnosis helps the patient and their family understand what they’re facing. It allows them to anticipate the support they may need in the coming years and prepare for it,” Sean’s certified nurse practitioner, Matthew Zgodinski, told the Cleveland Clinic. “Even though there are currently no treatments for FTD per se, there are resources available to help the patient and caregiver navigate the disease.”
Lisa finds strength in her and Sean’s ability to face the condition together. “We had our wedding anniversary and he just said, ‘You know, I think we’re stronger than ever together,’” she shared in the video, adding, “I’m grateful every day that I have and every moment I have with Sean, and that hasn’t changed. We’re aligned with the message of wanting to get the word out.”
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