Aphasia: “I would tell Bruce Willis to keep trying” – Three people with aphasia speak

Bruce Willis quits acting after aphasia diagnosis

Not only was she paralyzed on her right side, but she developed an unknown neurological condition, which affects the area of ​​the brain responsible for language, speech, and communication. “I couldn’t speak at all,” Pamela, a mother of two, recalls today, nine years after that terrifying moment. “I literally felt silent.” Aphasia can result from a variety of conditions – brain tumors, head injuries, and disorders such as dementia. But strokes are the most common. It damages the brain by cutting off the blood supply, and one in three survivors – more than 250,000 people in the UK alone – will develop aphasia.

The case made headlines after Hollywood family A-lister Bruce Willis recently revealed that he is giving up acting after being diagnosed with aphasia.
In a statement posted to Instagram, the Die Hard star’s ex-wife, Demi Moore, called this a “tough time” and said, “We are moving through this as a strong family unit.”

No reason was given for his condition, but the 67-year-old actor’s colleagues said they noticed his cognitive abilities deteriorating for years after he appeared disoriented on set and in recent films his lines had to be fed to him via an earpiece.

Pamela, 53, from Merseyside, understands these kinds of frustrations as well as someone who is still struggling with her speech.

A former NHS smoking cessation counselor suffers from Broca’s aphasia, also known as non-fluent or expressive aphasia, which is the most common of the five types of aphasia affecting the frontal lobe of the brain. This means that they cannot form or understand complex sentences and struggle with grammar. At first, she could neither read nor write.

“My words are different now,” she explains. “At first, words with more than two syllables were a real challenge and I couldn’t remember how to spell the words or put them in the correct order to make a sentence.”

Pamela uses a speech aid phone app to help manage her daily life but her friendships and social life are affected by the loss of her communication skills.

She’s honest about how she feels: “Sometimes I hate aphasia, it makes me frustrated. I can talk but people think I don’t understand, and they’re afraid to talk to me.”

“Some days I will speak better, some days words will be more difficult. It depends on the people I live with.”

Pamela Bateman Lee, who suffers from aphasia, and her husband, Mike (Photo: Julian Hamilton/Daily Express)

Nanette Mellor of the charity Brain Foundation says the impact of aphasia on mental health can be enormous.

“Frustration and literally losing one’s voice are common in society,” she says.

“For many daily activities, speaking is the way we communicate, and if you cannot speak, simple tasks such as going to a store or post office or getting on a bus can become very difficult.

“Not being able to call for help if needed can be very scary for people – if you’re completely nonverbal, knowing you can’t call 999 in an emergency can change your life.”

Nanette says that people who develop aphasia after sudden brain injury receive their diagnosis within days in the “vast majority” of cases the charity sees.

Even if speech does return, it may be impossible to fully recognize it, as happened to Wirral resident Dominic Nicholas, 25, who was diagnosed with non-fluent aphasia after suffering a stroke last August.

“When I started speaking again, I no longer had a Merseyside accent. I sounded like a robot or Siri,” he says.

“It feels so weird when you wake up one day with a different voice. I felt like I had lost a part of my identity – but everyone was really happy that I was speaking.”

Bruce Willis and Demi Moore smiling

Bruce Willis receives support from his ex-wife Demi Moore after being diagnosed with aphasia (Image: Getty)

Before his stroke, Dominic worked as a mechanic at Jaguar Land Rover.

But last summer he found himself criticizing people and feeling sad and upset, which he attributed to the stress and long hours of buying and selling new property.

Then one day he woke up and started to chant the words before his right side became numb and his speech became slurred.

His girlfriend Laura realized he was having a stroke and called 999. “When the stroke happened, I thought I was going to die,” Dominic recalls.

“I closed my eyes and lost consciousness, I have no memories of that time.”

He was taken to hospital, where doctors discovered that the cause of the stroke was a brain arteriovenous malformation (AVM) – a tangle of abnormal, poorly developed blood vessels that is extremely rare, affecting only one percent of the population.

His mood swings were caused by the AVM bursting and healing several times, causing small strokes in the part of his brain that regulates emotions.

Doctors operated on him for nine hours to remove it.

Oddly enough, two weeks after the surgery, Dominic was able to sing Frank Sinatra’s Fly Me To The Moon perfectly – the part of his brain that controls music and singing was intact.

“But my speech was very slow and stressful and my language was limited to small words,” Dominic says.

Dominic Nicholas

Dominic Nicholas, 25, was diagnosed with aphasia after suffering a stroke (Photo: The Brain Charity)

Speech and language therapy, known as SALT, is the most important treatment for people with aphasia to help them restore their communication skills.

But some patients face an NHS waiting list of several months before treatment.

Pamela received six months of treatment but saw little improvement during that time.

Previously a busy working mother, she suddenly found home life with her husband and children very difficult.

“My girls Kelly and Mercedes were 19 and 13 – it was hard for them,” she says.

“Unfortunately, across the board, community-based SALT has been completely stripped,” Nanette says.

“What we’re seeing now is that people are getting treatment while they’re in the hospital, but when they get out of the hospital, they’re left to figure things out for themselves, with a little help.”

Pamela received a free speech and language therapy course through the charity Brain Foundation, which she said helped her form longer words and sentences and feel better able to hold a conversation.

Rosemary Brown, a grandmother of three, who suffered a stroke at age 57 in 2017, is so disappointed that this week she lobbied government officials to better fund services in County Down, Northern Ireland, where she lives.

Rosemary was a social worker for 20 years before she had the stroke. Good communication is at the heart of everything I did.

You now find it difficult to say the phrases you want to say, especially when you are tired or anxious.

“It’s as if only words leave me and I can’t express myself,” she says.

“As someone who has spent a lot of my career talking to people, I really struggle with this.

“The ability to communicate is very important and when you struggle, it can be very frustrating and upsetting.”

Rosemary Brown

Rosemary Brown advocates for better support services for stroke sufferers (Photo: Courtesy of the Stroke Association)

Rosemary now writes poetry and has benefited from the Stroke Association’s Additional Outreach Service.

“My coordinator Emma helped me rediscover my love of reading by helping me access audiobooks when reading was so difficult,” she says.

“Simple things like this made a big difference.”

She wants people to know that she is still smart and capable. “Aphasia,” she asserts, “means that I’ve lost my speech, and that doesn’t mean I’ve lost my mind.”

Dominic agrees, “Aphasia is not the end of your life.” “If someone you know has aphasia, give them time. I just wanted to be treated the way I was before.”

He credits neuroplasticity – the brain’s ability to “rewire” and create new neural pathways after injury or damage – with the progress he’s made so far.

Dominic spent four months in hospital and underwent limited speech therapy on the NHS before he made big strides with the support of the charity Brain.

Many people also understandably need psychological support.

“There is also a financial and economic impact — job losses are a huge factor, and people who have experienced aphasia may feel they can no longer work, or face job loss,” Nanette says.

After Pamela’s stroke, her husband, Mike, 49, an airport operations assistant, became the sole breadwinner.

Inherent in his mind were those images of Pamela paralyzed in her hospital bed, unable to say a word.

“She could only move a finger in the air and communicate through that, which is the scary part thinking that’s exactly what it would be like,” he says.

“She decided she was going to learn to write with her left hand because she couldn’t move her right hand. She is stubborn.

“She used to be a rehab assistant in the hospital, so she was helping people with the same kind of things.

“Even when the doctors and nurses were telling her to stop, she needed rest, she continued to rehab. She is amazing, she is a fighter.”

Pamela found that her stroke made her more creative.

She sings in choir, performs crafts, creates artwork and enjoys photography. She also works as an actress and participates in pirate re-enactments.

“I wanted to work again after my stroke,” she says. “I put myself out there to raise awareness of aphasia.”

You’ve met new friends through the support services you access and have started speaking in full sentences.

“This improvement in my speech really boosted my confidence,” she says. “I felt like I could start going out and meeting new people, as it seemed less ‘different’.”

Her advice to Bruce Willis and his loved ones was as follows: “The most important thing for others to know about aphasia is to be patient.

“And for people with aphasia – keep trying. You can talk and learn how to help yourself.”

For information, advice and support about aphasia, visit thebraincharity.org.uk

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