People think I’m drunk and stupid because I battle aphasia like Bruce Willis
YOU might assume someone slurring their words is a little worse for wear.
But it happens to Rachel Sykes without so much as a drop to drink.
The 56-year-old suffered a brain injury in 2012 that left her with expressive and receptive aphasia — a condition that affects speech and communication.
She said: “In the past people have thought I’m drunk or I must be thick because of my speech. It’s so frustrating.
“I have a high IQ. It’s just that my words don’t come out how I want them to.”
Rachel’s aphasia can’t be cured and she told Fab Daily: “I’ve had to learn to live with it but it’s changed my life completely.”
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So she understands perfectly what Bruce Willis is going through.
When the Die Hard actor’s family revealed he had aphasia last month, it became the most-searched ailment on Google overnight.
Though up to 14million of us — 20 per cent of the population — live with a communication disorder, very little is known about aphasia.
Sufferers like Rachel are often mistaken for being drunk because of slurred or slow speech.
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It is most commonly triggered by stroke but can be brought on by head trauma, brain tumours and conditions such as dementia that cause neurological damage over time.
Bruce’s decision to retire from acting comes days after footie pundit Chris Kamara announced he was stepping back from live commentary because of speech apraxia, a similar condition to aphasia where there is a disconnect between the brain and mouth.
Chris’s symptoms are due to an under- active thyroid. But apraxia is generally caused by a problem in the area of the brain that plans movement — the bit that tells your muscles to move so you can talk.
The Bill actor Chris Ellison’s wife Anita announced he too has aphasia after a stroke 18 months ago. And presenter Kate Garraway said husband Derek Draper has a form of aphasia after contracting long Covid.
Game Of Thrones star Emilia Clarke also experienced aphasia in 2011 when she had a subarachnoid haemorrhage, or SAH — a life-threatening form of stroke.
She later wrote in The New Yorker magazine: “In my worst moments, I wanted to pull the plug. I asked the medical staff to let me die.
“My job — my entire dream of what my life would be — centred on language, on communication. Without that, I was lost.”
Emilia’s aphasia passed after a week but that is not the case for most.
Rachel, from Barnsley, South Yorks, said: “I know what I want to say but can’t always say it and despite hearing what people say or reading a sign, I don’t always process it how I should. I’ve had speech and language therapy, which helped and I’m grateful for, but it’s not a condition that can be cured.
‘Incredibly patient’
"I used to run my own property business and have a busy social life. Now my world is pretty small.
“Imagine not being able to order a takeaway or make a phone call to the bank or the doctor’s surgery because the words won’t come out right.”
When Rachel first meets people, she asks them to be patient with her.
She said: “While lots are, it’s not a well-known condition so people don’t know how to take me.
“My friends are incredibly considerate. They know all about aphasia so they wait for the right words to come.
“But it’s not easy knowing the rest of my life will be like this.
Twice a month the charity Speak With IT () hosts an aphasia cafe near Rachel’s home, where others with the condition and their loved ones can meet
She said: “It’s a lifeline and somewhere I get to relax and be myself because I’m with people like me.
In my worst moments, I wanted to pull the plug. I asked the medical staff to let me die. My job — my entire dream of what my life would be — centred on language, on communication. Without that, I was lost.
Emilia Clarke
“When I read about Bruce Willis, Chris Kamara and Chris Ellison all having speech and communication disorders, while it’s horrible for them, it helps the wider community understand these conditions.”
Speech and language therapist Gemma Hoyle, from Speak With IT, said it is important for people to be alert to changes in their or others’ speech, especially if a stroke or brain injury could be at play.
She added: “If the communication difficulty starts suddenly and severely, you should call 999. But for more gradual changes, speak to your GP.
"They can make referrals for investigations and, importantly, referral to speech and language therapy for assessment and advice.”
Children are generally referred straight to speech and language therapy.
Shana Docherty’s ten-year-old son Khenan has autism and as part of his condition, struggles with speech and communication.
The 46-year-old, from Tottenham, North London, who works part-time at a social club, said: “When Khenan was three I thought he’d flooded the bathroom by leaving the tap on.
“I told him not to and cleaned it up but a few minutes later it happened again. I asked him why he did it again and he said his big brother JJ did it.
While lots are (patient), it’s not a well-known condition so people don’t know how to take me. My friends are incredibly patient. They know all about aphasia so they wait for the right words to come.
Rachel Sykes
“I thought it was odd, as JJ wasn’t home. But when I noticed a broken pipe I realised he couldn’t get the words out to tell me it wasn’t him.
“When he was four, I noticed whenever Khenan was ill he’d say he had a belly ache, even if his head was hurting. That’s continued to this day.
“We have a process of elimination where I ask him if other parts of him are hurting or ill until I know what’s actually the matter.”
Khenan was finally diagnosed with autism when he was seven, thanks to Shana contacting children’s communication disorder charity I Can ().
Communication for him continues to be a struggle.
Shana said: “A few months ago he got really upset and told me, ‘Mummy, I don’t know how to feel my feelings’. I knew he was trying to tell me he couldn’t express himself but watching my son struggle with communication has been heartbreaking.
“He says sometimes he feels trapped but his problems aren’t just with him communicating with others
“He doesn’t understand people very well and doesn’t read their cues. He was being bullied at school but didn’t understand boys taking his shoes and leaving him barefoot was bullying.
Instruction manual
“He’s in year five but I’m terrified about him starting secondary school.
“His condition is so nuanced. I know him inside-out but despite having the diagnosis he has, his school doesn’t provide any extra support for him. They say he’s doing OK in class.
“It must be so hard for him trying to navigate his way in the world when he can’t communicate how he wants to and doesn’t get how people communicate with him. It’s like he’s trying to live in a world without an instruction manual.”
David Paylor was 49 when he had a stroke in October 2020. He is still having speech and language therapy — and he and wife Julie say people like Chris Kamara speaking about speech and communication disorders can only help grow understanding.
Julie, 54, an internal business development manager, said: “I met Chris at an event a few years ago.
“I was so shocked when I read about his communication disorder but speaking about it and getting it out there can only be a good thing.”
David, now 51, a commercial director from Barnsley, had not heard of aphasia before it happened to him.
He is still working on the physical aspects of his recovery but finds his speech one of the most frustrating things to deal with.
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He said: “I know what I want to say but it won’t come out the way I want it to sometimes. I keep trying until it comes out how I want it to.
“Julie and I have been together for 28 years and while our conversations are slightly different, we still have a lot of fun. It’s not easy having a communication disorder and if I could make it go away, I would. But I still have a brilliant life.”
Key rules to follow
WANT to support a loved one who has aphasia? Follow the advice on aphasia.org when you are with them:
- Make sure you have their attention before you start speaking.
- Try to minimise or eliminate any background noise.
- Keep your voice at a normal level unless they ask otherwise.
- Keep communication simple but grown-up. Simplify your sentence structure and reduce your rate of speech. Emphasise key words. Don’t “talk down” to them.
- Give them time to speak. Resist the urge to finish their sentences or suggest words.
- Use drawings, gestures, writing and facial expressions in addition to speech.
- Confirm you are communicating successfully with “yes” and “no” questions.
- Praise all attempts to speak and downplay errors. Don’t insist that every word be produced perfectly.
- Engage in normal activities whenever possible. Do not shield people with aphasia from family or ignore them in a group conversation. Try to involve them in family decision-making as much as possible. Keep them informed of events but avoid burdening them with too many day-to-day details.
- Encourage independence and avoid being overprotective.
