By India McCarty
Emma Heming Willis opened up about the beginning stages of husband Bruce Willis’ aphasia and frontotemporal dementia.
“FTD doesn’t scream, it whispers,” she explained to PEOPLE. “It’s very gray to know where Bruce stopped and where his disease kicked in.”
Heming Willis shared that she initially noticed his stutter had returned — the actor overcame the speech impediment as a young person — but “never in a million years thought that was a symptom of FTD.”
“Conversations weren’t really aligning anymore, and our relationship started to shift. It was hard to put my finger on why and what was happening,” she continued. “I thought it was something I was doing in our marriage that was not working anymore.”
Related: Bruce Willis’ Wife Shares Major Update About Actor’s Condition
Heming Willis likened the situation to “banging your head against a brick wall,” adding, “You’re just like, ‘Where is the miscommunication coming? What is happening within our relationship?’”
“I have heard so many other couples that have gone through this where they just can’t figure it out [and] think it’s a marital problem, but in fact, it’s a symptom of a disease,” she said.
Willis was eventually diagnosed with aphasia, a disorder that affects someone’s ability to process language and communication. A few years later, that diagnosis shifted to FTD.
“I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing,” Heming Willis told PEOPLE about that moment. “I had pins and needles going through my body. My ears were wafting. I’m sure he was feeding us information, but all I heard was just, ‘Check back in and here’s a pamphlet.’”
She continued, “I was grateful to get to a diagnosis, but there is no cure for this disease, and being sent on our way with no support, no nothing was really traumatic. It’s not just happening to us. This is how many people are receiving their diagnosis.”
Now, Heming Willis raises awareness for other caregivers and shares her own story in new book, The Unexpected Journey.
“Born from grief, shaped by love, and guided by purpose, this is the book I needed back when Bruce was first diagnosed and I was frozen with fear and uncertainty,” she posted on Instagram. “This is the book I trust will help the next caregiver. It is filled with support, insight, and the hope needed to navigate this journey.”
Heming Willis’ continued transparency about the struggles of caregiving, as well as the difficulties of navigating FTD, is an inspiration to others who are going through the same thing.
Read Next: Bruce Willis’ Wife Opens Up About ‘Unexpected Journey’ as Husband’s Caregiver
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