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By Kayla DeKraker
Since Bruce Willis’ frontotemporal dementia diagnosis, his wife, Emma Heming Willis, has stepped up in ways she didn’t expect.
In a recent interview, the actor’s wife shared her journey figuring out life amid her husband’s difficult diagnosis.
“On the day Bruce got his diagnosis, we left the doctor’s office with a pamphlet and a hollow goodbye. No plan, no guidance, no hope, just shock,” she said. “The future we imagined simply vanished, and I was left trying to hold my family together, raise our two young daughters, and care for the man I love while navigating a disease I barely understood.”
Bruce was first diagnosed with aphasia in 2022, but that diagnosis progressed to frontotemporal dementia in 2023.
The Alzheimer’s Association defines Frontotemporal dementia as “a group of disorders caused by progressive nerve cell loss in the brain’s frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears).”
The disease “gets worse over time and the speed of decline differs from person to person. For many years, individuals with frontotemporal dementia show muscle weakness and coordination problems, leaving them needing a wheelchair — or unable to leave the bed.”
“I felt lost, isolated and scared,” Emma said of hearing the new diagnosis. “What I needed in that moment at that appointment wasn’t just medical information. I needed someone to look me in the eye and say, ‘This feels impossible right now, but you will find your footing. You will survive this, and you will grow because of it.'”
Now, she is working hard to do just that for other people going through something similar. In April, she announced her book The Unexpected Journey, which is meant to give “support, insight, and the hope needed to navigate this journey,” will release in September.
Related: Emma Heming Willis Still Finds ‘Joy’ With Husband Bruce Willis
Emma explained, “The book is the roadmap I wish someone had handed me on the day in 2022. I wrote it for other caregivers who are desperate for answers, aching for support, and wanting to be seen and wondering how they’re going to make it through.”
She also knows that she is in an advantaged position as the wife of a famous actor, so she wants to use her platform and resources to help others in need.
“I’ve had access to world-class experts because of who Bruce is, and I know that’s a privilege, so I didn’t want to keep that information to myself,” she explained. “I have a megaphone and resources that others don’t.”
Thankfully Bruce has the support of his friends and family to help him during this time. And as his wife continues her advocacy work to help, she’s helping not just her husband but anyone else struggling with a similar diagnosis.
Read Next: Emma Heming Willis ‘Could Breathe’ After Sharing Bruce Willis’ Dementia Diagnosis
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