Emma Hemming Willis shares video about Bruce Willis' life after diagnosis: "It's filled with joy."
Emma Hemming Willis, the wife of Bruce Willis, shared a message on Instagram on Sunday about her husband's life after being diagnosed with primary progressive aphasia. She said she had been "triggered" by seeing a headline about her husband that claimed there was no more joy in his life.
"I can just tell you, that is far from the truth," she said in an Instagram video.
Primary progressive aphasia is a medical condition that leaves patients struggling to understand language and communicate. It can make it difficult to form sentences and make the person hard to understand. Willis was also was also diagnosed with frontotemporal dementia, a group of brain disorders that affect the brain's frontal and temporal lobes, which are associated with personality, behavior and language, Mayo Clinic explains.
View this post on InstagramA post shared by Emma Heming Willis (@emmahemingwillis)
But Hemming Willis said his life isn't over. "I need society and whoever's writing these stupid headlines to stop scaring people, stop scaring people to think that once they get a diagnosis of some kind of neurocognitive disease that it's over, let's pack it up, nothing else to see here, we're done," she said.
She said it's actually the complete opposite of that. While she is dealing with grief and sadness, they've started a new chapter. "And that chapter, let me just tell you what it is," she said. "It's filled with love. It's filled with connection. It's filled with joy. It's filled with happiness. That's where we are."
In a second video on Sunday, Hemming Willis said such headlines are harmful to other caregivers or partners of people with dementia, because the headlines make it sound "all dark and scary and gloomy."
"I'm not saying that dementia is rainbows and unicorns. It is not," she said. "But there is also another side of it that is so beautiful."
After revealing his diagnosis, Willis announced he was stepping away from acting. Last month, talk show host Wendy Williams announced she was also diagnosed with the same two conditions after previously stepping away from her show. She was on occasion seen unable to form words and acted erratically, including during tapings of her talk show, which left many fans concerned and confused.
Hemming Willis has posted several videos on Instagram raising awareness for her husband's conditions, in one, sharing a message for paparazzi trying to capture shots and video of her husband as he was getting coffee with friends.
"I know this is your job, but maybe just keep your space," she said. "For the video people, please don't be yelling at my husband, asking him how he's doing or whatever. The woohoo-ing and the yippee ki-yays – just don't do it. OK? Give him his space. Allow for our family or whoever's with him that day to be able to get him from point A to point B safely."
Willis and Hemming Willis have two daughters. The actor also has three daughters with ex-wife Demi Moore.
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Caitlin O'Kane is a New York City journalist who works on the CBS News social media team as a senior manager of content and production. She writes about a variety of topics and produces "The Uplift," CBS News' streaming show that focuses on good news.