Family Using Stage To Educate, Advocate
Bruce Willis has played tough guys in Hollywood productions for more than 40 years. Unfortunately, neurodegenerative disease brought his career to a halt two years ago.
Willis’ condition is worsening as he battles a form of frontotemporal dementia (FTD), a progressive brain disorder. He requires a full-time care team and a separate residence next to the family’s home. As his family knows, there is no known treatment or cure for FTD.
At age 70, Mr. Willis is reportedly no longer able to remember his acting career due to the progression of his condition. His wife, Emma Heming Willis, recently published a book about the experience, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” The book is a guide to help caregivers take care of themselves.
“Caregivers need all the help that they can get,” she explains. “This isn’t a guide on how to be a caregiver. It’s about how to care for yourself while doing one of the hardest, most heartbreaking jobs in the world. Through my own experience and insights from leading experts, I hope to help other care partners feel less isolated, better prepared, and empowered to navigate this journey with strength and support.”
The day Emma Heming Willis’ husband was diagnosed with FTD, they were given a simple pamphlet and told to check back in a few months.
Emma walked out of that doctor’s appointment with fear and confusion. Emma felt alone and more isolated than ever. How would she care for her husband while parenting their young daughters? Emma wanted someone who’d been through it to explain the road ahead and how to navigate the twists, turns and blindspots. In her search for answers, she ended up writing the book for other families and caregivers.
“With grace, honesty, and unflinching courage, Emma has opened her heart to share the truth of caregiving—its heartbreaks and its hidden gifts,” said Demo Moore. “The Unexpected Journey is a lifeline for anyone navigating the complex world of dementia and it is her gift to every caregiver who has felt lost, overwhelmed, or alone. Through her story, Emma offers not only guidance, but also the kind of empathy that only comes from living it.”
There are several causes for neurodegenerative disease, including genetics, head trauma and exposure to neurotoxins. It’s impossible to say what triggered FTD in Mr. Willis.
Unfortunately, neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease (CJD) and others, is now the fastest-growing cause of death in the world. Misinformation, disinformation and mismanagement are compounding the problem.
“This book is a game changer for caregivers of loved ones with dementia,” said Maria Shriver, an active advocate for greater awareness, education and support for neurodegenerative disease. “This book will help millions of families, like hers, like yours, like mine, like everyone’s. It’s a book for our time.”
To order your copy of The Unexpected Journey, please, visit https://emmahemingwillis.com/the-unexpected-journey/
According to Nobel-Prize-winning physiologist Stanley Prusiner, ALS, Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, Huntington’s disease, and other forms of neurodegenerative disease are all forms of prion disease. There is no reason to believe that FTD is an exception. Hospitals and neurologists are well aware of the threats associated with neurodegenerative disease. Caregivers, medical professionals and others are in harm’s way. The negligence is criminal
The medical term for prion disease is transmissible spongiform encephalopathy (TSE). The operative word is “transmissible.” Prions migrate, mutate and multiply. They spread through all cell tissue and bodily fluids. Prions are unstoppable.
