‘I’m not daft or drunk!’ Wiltshire stroke survivor calls for more public understanding of aphasia

A stroke survivor from Warminster is calling for more public understanding of the speech and language condition which affects him and more than 350,000 other people in the UK.

Mark Docksey, 38, says there are often times when people think he is “either daft or drunk” because they make assumptions about his speech.

He has aphasia, apraxia and dysphasia, as a result of a stroke in November 2021. It means it can take him time to speak and find words, and he occasionally mixes up word order when writing.

The Royal Artillery veteran and NHS worker is now backing a Stroke Association campaign to raise awareness of aphasia and the impact it can have for stroke survivors.

New research from the charity revealed over half of people in the South West (51%) have never heard of aphasia, despite it affecting over 350,000 people in the UK.

Mark said: “I’ll start talking and just know that people won’t expect what comes out because I’m young. 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.

“I will tend to take the mick out of myself before other people can do it. I’ll say things like, ‘I know I sound like the love child of Forrest Gump and Jack Sparrow.’ That way, nobody can get me because I’ve done it first. It’s a coping mechanism. 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.”

Mark, who previously worked as a nurse on a stroke ward, quickly realised what was happening to him when he was having his stroke. Terrifyingly, he could not communicate this to anyone as he was unable to speak.

Fortunately, his wife Amanda knew something was wrong and he was rushed to hospital. Scans confirmed he had had an ischaemic stroke after initial suspicions it was Bell’s Palsy.

Mark said: “Before my stroke life was 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. 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.

“The morning after, Amanda asked me to move my car. 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.”

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.

Mark’s speech and language aphasia and apraxia still have a huge impact on his communication on a day-to-day basis. He has developed various coping strategies.

Mark said: “My aphasia 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.

“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.

Mark said: “Be very patient. I slow things down on purpose so I can be articulate when I answer. 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 to 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.

Mark said: “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.

“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.

The documentary aims to equip people with the knowledge, understanding and confidence to support those living with aphasia. Currently, most people in the South West (77%) lack confidence in recognising its symptoms and less than half of people (38%) would feel confident in communicating with someone with the disorder.

Whilst aphasia does not affect intelligence, the majority (79%) think being able to speak or communicate well is a sign of intellect, which can create huge barriers for those with aphasia. In fact, a fifth of adults (18%) also admit that, if they met someone who had problems communicating, they would assume that person had a learning difficulty.

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.”

Watch the film online at stroke.org.uk/film or stream on Channel 4.

To find out more about aphasia and how you can support those affected, visit www.stroke.org.uk/aphasia.