Bruce Willis to step away from acting after aphasia diagnosis
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Not only was she paralysed down her right side, she had developed the little known neurological condition aphasia, which affects the area of the brain responsible for language, speech and communication. “I couldn’t talk at all,” recalls mother-of-two Pamela today, nine years after that terrifying moment. “I literally felt voiceless.” Aphasia can be caused by a variety of conditions – brain tumours, head injuries and disorders such as dementia. But strokes are among the most common. They damage the brain by cutting off blood supply and one in three survivors – more than 250,000 people in the UK alone – will consequently develop aphasia.
The condition hit the headlines after the family of Hollywood A-lister Bruce Willis recently revealed he would step away from acting following an aphasia diagnosis.
In a statement posted on Instagram, blood pressure medicine types the Die Hard star’s ex-wife Demi Moore called it a “challenging time” and said, “we are moving through this as a strong family unit”.
A cause for his condition was not given, but colleagues of the 67-year-old actor have said they noticed his declining cognitive abilities for years after he appeared confused on set and in recent films his lines reportedly had to be fed to him via an earpiece.
Pamela, 53, from Merseyside, understands these sorts of frustrations well as someone who still struggles with her speech.
The former NHS Stop Smoking advisor has Broca’s aphasia, also known as non-fluent or expressive aphasia, the most common of five types of aphasia affecting the frontal lobe of the brain. It means she cannot form or understand complex sentences and struggles with grammar. Initially, she could neither read nor write.
“My words are different now,” she explains. “At first, words containing more than two syllables were a real challengeand I couldn’t remember how to spell words or put them in the right order to create a sentence.”
Pamela uses a speech assistance phone app to help manage her day-to-day life but her friendships and social life have been impacted due to her lost communication skills.
She’s honest about how that makes her feel: “Sometimes I hate aphasia, it makes me down. I can talk but people think I don’t understand, and they are scared to talk with me.
“Some days I’ll talk better, some days the words are more difficult. It depends on the people I’m with.”
The emotional and mental health impact of aphasia can be huge, says Nanette Mellor of The Brain Charity.
“Feeling frustrated and literally voiceless in society is common,” she says.
“For many day-to-day activities, talking is how we communicate and if you can’t speak, simple tasks like going to a shop or Post Office or getting a bus can become very difficult.
“Not being able to call for help if needed can also be deeply frightening for people – if you are completely non-verbal, to know you can’t ring 999 in an emergency can be life-changing.”
Nanette says people who develop aphasia following a sudden brain injury typically receive their diagnosis within days in the “vast majority” of cases the charity sees.
Even if speech returns, it can be completely unrecognisable, as happened to Wirral resident Dominick Nicholas, 25, who was diagnosed with non-fluent aphasia after suffering a stroke last August.
“When I first started being able to talk again, I didn’t have a Merseyside accent any more. I sounded like a robot or Siri,” he says.
“It feels so weird when one day you just wake up with a different voice. I felt like I had lost part of my identity – but everyone else was just really pleased I was talking.”
Before his stroke, Dominick worked as a mechanical fitter at Jaguar Land Rover.
But last summer he found himself snapping at people and feeling unhappy and upset, which he attributed to the stress and long hours of buying and doing up a new property.
Then one day he woke and began repeating words before his right side went numb and his speech became slurred.
His girlfriend Laura realised he was having a stroke and dialled 999. “When the stroke happened, I thought I was going to die,” recalls Dominick.
“I closed my eyes and blacked out, I have no memories of that time.”
He was rushed to hospital, where doctors discovered the cause of the stroke was a brain arteriovenous malformation (AVM) – a tangle of abnormal, poorly developed blood vessels which is extremely rare, affecting just one per cent of the population.
His mood swings had been caused by the AVM bursting and healing multiple times, causing mini-strokes in the part of his brain that regulated emotions.
Doctors operated on him for nine hours to remove it.
Bizarrely, two weeks after his surgery, Dominick could sing Frank Sinatra’s Fly Me To The Moon perfectly – the part of his brain controlling music and singing was undamaged.
“But my speech was very slow and laboured and my language was limited to small words,” Dominick says.
Speech and language therapy, known as SALT, is regarded as the most essential treatment for people with aphasia to help them regain their communication skills.
But some patients face an NHS waiting list of several months before treatment.
Pamela received six months of therapy but experienced little improvement during that time.
Previously a busy working mum, she found home life with her husband and children suddenly incredibly difficult.
“My girls Kellie and Mercedez were 19 and 13 – it was very hard on them,” she says.
Nanette says: “Sadly, across the board, community-based SALT has been completely stripped back.
“What we’re seeing now is that people are given therapy while they’re in hospital but when they’re discharged they’re left to get on with things on their own, with little help.”
Pamela received a course of free private speech and language therapy through The Brain Charity, which she said helped her form longer words and sentences and feel more able to have a conversation.
Grandmother-of-three Rosemary Brown who had a stroke aged 57 in 2017 is so disillusioned that this week she lobbied government officials for better funding for services in County Down, Northern Ireland, where she lives.
Rosemary was a social worker for 20 years before her stroke. Good communication lay at the heart of everything she did.
Now she finds it hard to utter the phrases she wants to say, particularly when she is tired or anxious.
“It’s as if the words just leave me and I can’t express myself,” she says.
“As someone who spent a lot of my career talking with people, I really struggle with this.
“Being able to communicate is so important and when you’re struggling, it can be frustrating and very upsetting.”
Rosemary now writes poetry and has benefited from the Stroke Association’s Communication Plus service.
“My co-ordinator Emma helped me rediscover my love of reading by helping me access audiobooks when reading was too difficult,” she says.
“Simple things like that have made a big difference.”
She wants people to know she is still smart and capable. “Having aphasia means I have lost my words, it does not mean I have lost my intellect,” she stresses.
“Aphasia isn’t the end of your life,” agrees Dominick. “If someone you know has aphasia, give them the 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.
Dominick spent four months in hospital and had limited speech therapy on the NHS before making strides with support from The Brain Charity.
Many people also understandably require psychological support.
“There is also the financial and economic impact – loss of employment is a massive factor, people who have experienced aphasia may feel they can no longer work, or face losing their jobs,” says Nanette.
Following Pamela’s stroke, her husband Mike, 49, an airport operations assistant, became the sole breadwinner.
Ingrained in his mind are those images of Pamela paralysed in her hospital bed, unable to say a word.
“She could only waggle a finger in the air and communicate through that, which was the scary part thinking this was just how it was going to be,” he says.
“She decided she was going to learn to write with her left hand as she couldn’t move her right one. She’s tenacious.
“She used to be a rehab assistant at a hospital so would help people with the same kind of things.
“Even when the doctors and nurses were telling her to stop it, she needed to rest, she carried on with her rehab. She’s amazing, she’s a fighter.”
Pamela has found her stroke made her more creative.
She sings in a choir, does crafts, creates artwork and enjoys photography. She also works as an actor 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.”
She has met new friends through the support services she accesses and has started speaking in complete sentences.
“This improvement in my speech really boosted my confidence,” she says. “I felt I could start to go out and about more and meet new people, as I sounded less ‘different’.”
Her words of advice for Bruce Willis and his loved ones are this: “The most important thing others should know about aphasia is to have patience.
“And for people with aphasia – keep trying. You can talk and can learn to help yourself.”
For information, advice and support about aphasia, visit thebraincharity.org.uk
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