The star of ‘Die Hard’ and ‘The Sixth Sense’ was diagnosed with frontotemporal dementia (FTD) in November 2022, with the family sharing the shocking news with the world in 2023.

Now, Emma Heming Willis has recalled the shocking moment that a neurologist informed them of her husband’s health condition.

Speaking to PEOPLE, Heming Willis recalled: “I’m sure the doctor was explaining what FTD is, [but] I couldn’t hear a single thing.”

She added: “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’.”

There was one part of the horrendous experience which she found particularly difficult to process.

Emma Heming Willis and Bruce Willis (Noam Galai/WireImage)

Heming Willis described how, after being given the diagnosis, the family were sent away ‘with no support’, and drew attention to the fact that millions of Americans have to go through the same awful process.

She said: “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.”

She added: “I ended up searching the web to figure out what to do.”

Heming Willis said the time after the family received the diagnosis was ‘bleak’.

“Early on, life felt very dark, very one-note of just grief and sadness,” she said.

Bruce Willis was diagnosed with a form of dementia (ANGELA WEISS/AFP via Getty Images)

“Early on I was too scared to say anything to anyone. It felt like what was happening was only happening to us.

“Over time, I realized it would be beneficial to talk about it and raise awareness so people get to the doctor sooner, can be diagnosed sooner, get into clinical trials.”

Now Heming Willis has released a new book documenting her experiences, and hoping to offer some guidance to other families in a new book – The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.

“I wrote the book that I wish someone had handed me on the day we received the diagnosis,” she said, adding: “Caregiving is hard, and there are many people doing it with little to no support … The only way I can get through this is to help someone else feel less alone.”