"Bruce would really want us to be in the joy of what is," Emma said, during an emotional interview on Monday's 'Today' show
On Monday, the Make Time Wellness founder, 45 — who has been caring for Bruce, 68, after his frontotemporal dementia (FTD) diagnosis earlier this year — appeared on the Today show alongside Susan Dickinson, head of the Association for Frontotemporal Degeneration (AFTD), to promote World FTD Week.
During the emotional conversation, Emma opened up about Bruce's health, telling Today co-anchor Hoda Kotb that he may or may not knows what's happening to him. "It's hard to know," she said. "It's hard to know."
"What I’m learning is that dementia is hard," Emma said. "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 that this is a family disease, it really is."
Frontotemporal dementia is an all-encompassing term for a group of brain disorders that threatens, as the name implies, the frontal and temporal lobes of the brain. This means that parts of these lobes atrophy.
The shrinking of these areas can cause speech issues, emotional problems and changes in personality. Other symptoms can include loss of motor skills including problems walking, swallowing or muscle spasms.
Because the disease affects the frontal lobe — which controls self-insight — any understanding that they have changed is often the first thing those diagnosed with FTD lose, Dickinson said on Today. "Other people retain that for a long time," she explained. "We really don't know."
Exclusive: In honor of World Frontotemporal Dementia Awareness week, Bruce Willis’ wife Emma Heming Willis speaks to @hodakotb about the condition in her first interview since his diagnosis.
“It was the blessing and the curse,” Emma said of receiving Bruce’s diagnosis. pic.twitter.com/VY5yhVjZIf
— TODAY (@TODAYshow) September 25, 2023
In fact, there's a lot medical professionals and researches are still learning about FTD. "Most doctor's aren't familiar with it, so it can take almost 4 years for people to get diagnosed on average," Dickinson said. Along the way, they approve "many misdiagnoses" including "depression, bipolar disease, Alzheimer's, or even someone with some of the movement diseases" like "Parkinson’s or ALS."
That appeared to happen to Bruce. In March 2022, his family first publicly revealed that he was stepping away from acting after being diagnosed with aphasia, a language disorder that affects a person's ability to communicate. But in February, Emma shard that his condition had worsened, and that he had frontotemporal dementia.
FTD symptoms tend to get worse over time. Patients typically begin to notice symptoms between 40 - 65 years of age, but it can affect people who are younger. It is the most common form of dementia for people under 60.
Asked on Today how people present with FTD, Dickinson said that family members should look for "unexplained changes in how a person is in the world."
"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 shared. "We’re talking about maybe somebody who always managed the family’s finances has trouble balancing a checkbook, or has problems at work. Somebody who always performed well is either making poor decisions or just isn’t completing tasks."
Coming to terms with Bruce's diagnosis was both "the blessing and the curse," Emma said. One one hand, it was helpful "to sort of finally understand what is happening" she could be "into the acceptance of what is." But, as she noted, "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.
There's one label Emma rejects, however: that of "caretaker." Instead, she calls herself a "care-partner," noting "He is my partner, so I am his care-partner."
Being in that role, Emma has learned about the importance of taking care of herself, too. "As a care partner, it’s so important to be able to ask for help and support. You can look to organizations like the AFTD, like Hilarity for Charity — [which] is sort of a great starting point. It’s important for care partners to look after themselves so that they can be the best partner for the person that they’re caring for."
"There’s so many beautiful things happening in our lives," she added. "It’s just really important for me to look up from the grief and the sadness so that I can see what is happening around us. Bruce would really want us to be in the joy of what is. He would really want that for me and our family."
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