Former stroke nurse and stroke survivor Mark Docksey discusses the daily challenges of living with speech and language difficulties and how people can enable those living with aphasia, apraxia and dysphasia to feel supported and heard
“I know I sound like the love child of Forrest Gump and Jack Sparrow”
For Mark Docksey, making light of his speech problems – caused through him living with aphasia, apraxia and dysphasia since his stroke in November 2021 – has become an effective coping mechanism.
“I will tend to take the mick out of myself before other people can do it,” says the NHS worker, who used to work as a nurse on a stroke ward.
“That way, nobody can get me because I’ve done it first.”
Mark, 38, is used to people making assumptions about him because of his speech, and is used to people thinking he is “either daft or drunk”.
“I’ll start talking and just know that people won’t expect what comes out because I’m young,” says Mark, a Royal Artillery veteran.
“I do lots of interviews and phone calls in my job and sometimes I have to say, ‘I have had a stroke, I’m not drunk.’ People have previously thought that I’ve been drunk, so now I say that.
“It’s really difficult. Sometimes I miss being able to stand my ground.
“I feel like I can’t do that because I feel a bit stupid, even though I know I’m not. I have a degree, I have all my qualifications and I like to think I’m quite bright.
“But that’s sometimes how people make me feel.”
Since his stroke, Mark is one of more than 350,000 people, a third of stroke survivors, in the UK who live with aphasia – but research shows that more than half of people have never heard of the condition.
His daily struggles with his speech are a far cry from his life prior to November 2021, which he describes as being “perfectly normal”.
“I was working as a hospital nurse. I’m a football coach for under 14s and at the time I was helping with my youngest son’s age group’s training – the under-10s,” recalls Mark, from Warminster.
“I’d been to work that day, been to football, got the kids to bed, had one beer and watched some TV with my wife.”
However, that night, Mark began to realise something was wrong, but it was only when trying to respond to his wife Amanda the reality dawned on him.
“The morning after, Amanda asked me to move my car,” he says.
“I walked past Amanda, didn’t say anything and went to grab some clothes and she asked why I wasn’t talking. That’s when I tried to speak but I couldn’t, and I was dribbling a bit.
“I’m a practical joker and my wife initially thought I was messing around so she asked me to write down what I was saying.
“She gave me a pen and piece of paper and I just scribbled. Then I realised. I could see the concern on her face.
“We went to the hospital, and during that journey I knew what had happened. My first job in hospital had been on the stroke ward. I was in disbelief. I couldn’t speak to tell anyone I was having a stroke.
“At the hospital I remember thinking that if they sent me home, I was going to die.”
Scans confirmed he had had an ischaemic stroke after initial suspicions it was Bell’s Palsy.
Mark received physiotherapy, occupational therapy and speech and language therapy.
He has now returned to work in the NHS but can no longer work in clinical areas as a nurse, so has turned his hand to pastoral care, recruitment and staff retention. He is thriving in his new role.
However, Mark’s aphasia and apraxia continue to have a huge impact on his communication on a day-to-day basis, but he has developed various coping strategies.
“My diagnosis of severe aphasia, apraxia and dysphasia came within days. Recovery was hard work and very tiring. Every day I felt like I’d run a marathon,” he says.
“It was frustrating, and it still is frustrating now.
“I miss my Oldham accent. I miss having a conversation with someone where I don’t have to think three steps ahead of what I’m going to say.
“It’s like playing chess in your head. You’re always thinking ahead for what you’re going to say. What I’ll say to someone in the moment I’ve have already said to myself in my head three moves ago.
“When you try to speed up it goes out of the window and nothing makes sense.
“When I get forms to fill in I have to get help, but I have a special keyboard and mouse at work and home, and lots of technology to help me with reading and writing.
“I put in my work email signature that I have aphasia and apraxia, so if my emails don’t make sense people can just ask again.”
Now Mark, a father of three, wants to help others to understand how they can help and communicate better with people with aphasia and is supporting the Stroke Association campaign to shine a light on the condition.
“Be very patient. I slow things down on purpose so I can be articulate when I answer,” he says.
“If we get things wrong, don’t make us feel stupid because we’re not stupid.
“Don’t make us feel like we’re worthless. Don’t fill in the spaces for me, let me try to find my words. If I can’t do it after a couple of minutes, then feel free to help me, but try to let me do it myself.
“I’ve had someone come work with me and I’ll never forget her asking me, ‘Mark, how would you like me to deal with your speaking? I found that very empowering.”
Mark has also received support from the Stroke Association in his recovery.
“I couldn’t talk when I had my stroke. The first thing my wife did was to go on the Stroke Association website and she watched the videos,” he recalls.
“As I started to get better, or whenever I was frustrated, she would show me the videos of people having interviews about their stroke and sharing their stories. That really helped me.
“You see the journey people go through and see they are still going. I also received communication support from the Stroke Association.
“Stroke can happen to anyone. I was 37 when I had my stroke, I was in the army, ran marathons, and I was in the gym all the time but it still got me.”
To help raise awareness of aphasia, the Stroke Association has launched ‘When the Words Away Went’, a documentary about three stroke survivors living with aphasia embarking on their journey to find their voice and rebuild their lives.
Jacqui Cuthbert, the Stroke Association’s associate director for the South West and Channel Islands, said: “Aphasia is very common, affecting over a third of stroke survivors, so it’s disheartening to see such low awareness and knowledge of aphasia amongst the general public.
“Most of us can’t imagine living with aphasia, but it makes everyday tasks like getting on the bus or talking to a friend daunting, made worse by misconceptions that people with aphasia lack intelligence.
“This can often lead to anxiety and depression, feeling excluded from society and difficulties with personal relationships.
“The Stroke Association is here for everyone affected by aphasia, providing support and an important reminder that there is hope. Aphasia can and does improve, and with the right help people with aphasia can live normal lives.”
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