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As she continues to care for her husband, Emma Heming Willis isn’t sure if Bruce Willis is aware he is battling dementia.
On Monday morning, Emma appeared on the TODAY show alongside Susan Dickinson, head of the Association for Frontotemporal Degeneration (AFTD), to promote World FTD Week.
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“Dementia is hard,” Emma said on TODAY. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”
When co-anchor Hoda Kotb asked if her partner knows what is happening to him, Emma said she was unsure.
“It’s hard to know,” she replied. “It’s hard to know.”
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Bruce stepped away from acting in March 2022 after his family revealed he was suffering from aphasia — a neurological affliction that leaves a person unable to communicate.
But his condition worsened and this past February his family confirmed that the father of five is suffering from frontotemporal dementia.
“FTD is a cruel disease that many of us have never heard of and can strike anyone,” Bruce’s loved ones wrote in a statement on the Association for Frontotemporal Degeneration website.
“While this is painful, it is a relief to finally have a clear diagnosis,” the statement released by Willis’ family continued. “Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.”
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According to the Mayo Clinic, frontotemporal dementia is an “umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality, behaviour and language.”
During her appearance on TODAY, Emma said that learning Bruce’s diagnosis was both “the blessing and the curse.” The former model said that the family was grateful to “finally understand what is happening.” But she added “it doesn’t make it any less painful.”
“Just being in the acceptance is, and just being in the know of what is happening to Bruce, just makes it a little bit easier,” she said.
Dickinson shared some of FTD’s most notable symptoms.
“What we’re really talking about is unexplained changes in how a person is in the world. So, somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word,” she said.
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In an Instagram post this past March, Emma said that going forward she is making it her mission to “raise awareness” about the disease and advocate for “caregivers.”
“I’m going to turn my grief and anger and my sadness into something good around something that feels less than,” she said.
But last month, Emma gave followers a candid update in an Instagram video in which she confessed she’s “not good” as she reached out to other “care partners” for support.
“I just think it’s so important for us to break up our thinking, which can feel, for me, very much like doom and gloom,” she said. “I know it looks like I’m out living my best life. I have to make a conscious effort every single day to live the best life that I can … I do that myself, I do that for my two children, and for Bruce, who would not want me to live any other way. So I don’t want it to be misconstrued that I’m good, because I’m not. I’m not good. But I have to put my best foot forward for the sake of myself and my family.”
mdaniell@postmedia.com
X: @markhdaniell
Emma Heming Willis marks sad anniversary with Bruce Willis: ‘SEIZE EVERY OPPORTUNITY’
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