For one Northern Ireland woman the fear of being unable to communicate became a reality three years ago when she suffered a stroke.
A world without communication is an everyday reality for the 350,000 stroke survivors across the UK like Jessie McConkey from Co Derry who is living with aphasia – a communication disability that is most commonly caused by stroke.
Aphasia can affect a person’s ability to speak, read, write and use numbers, but it does not affect intellect.
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Jessie, 67, who lives with her husband Crawford in Coleraine, suffered a stroke at home one evening in August 2019.
She now lives with aphasia and fatigue as a result.
“The evening it happened, I remember cooking a family meal for my daughter Amy’s birthday and shortly after that I remember just not feeling right,” Jessie recalled.
“I didn’t know what it was but I just took myself off to bed to see if I could sleep it off. The next day, I didn’t feel any better and I found my speech becoming difficult. I knew the FAST signs of a stroke but to me, it didn’t seem to be that.
“Eventually I said to my family that I just wasn’t well. A friend of mine who is a nurse told me to get to the hospital immediately. So I went to Causeway Hospital and after a scan, they confirmed that I’d had a stroke.”
Jessie stayed in hospital for four days and although she didn’t seem to have any lasting effects in terms of mobility, she had lost the ability to speak.
“I knew the words I wanted to say but I just couldn’t say them and I could hear myself making no sense at all. I had to learn to speak all over again.
“It was just awful. Even now, if I can’t say the right word at the right time, I get very stressed and annoyed with myself.
“I loved to chat with family and friends and so this new reality for me was so hard in the beginning. I had to learn to read again too.
“Going right back to the start. Looking at pictures of dogs and cats and having to relearn the word ‘dog’ or ‘cat’. I knew what I needed to say but I just couldn’t say it.”
“It was so hard for my family too. My husband and daughter had to cope with this from day one. Before the stroke I was so outgoing and chatty and now I’d get so cross and frustrated when I couldn’t make myself understood.
“I would say things like 'I’m not stupid'. It robbed me of my self-confidence,” she added.
After three months of speech and language therapy from her local Health and Social Care Trust, Jessie was contacted by Sharon Millar from the Stroke Association’s Speech and Language Therapy team.
“I started attending small group sessions with Sharon and three other stroke survivors. It was so good to be able to explore communication in this way. We were able to share our experience and how we really felt and work on ways to improve our speech and communication again in a safe space.
“My confidence started to return and I could tell my communication was getting better. Of course then the pandemic hit and we could no-longer meet up face to face but Sharon and the team switched to running the group sessions online using Zoom.”
Jessie added: “It was an absolute lifesaver. I really do get a lot out of them. We do exercises and quizzes to help us practice finding words and communicating in other ways.
“The team at the Stroke Association have given me my life back again. I’d lost so much after my stroke and my confidence was so low. The people I met at the Stroke Association sessions are like a part of my family. If I didn’t have this aphasia group I don’t know what I’d do.”
Jessie's situation has been laid bare in a new survey of over 2,000 people across the UK by the Stroke Association which reveals that 41% can’t imagine living in a world where they couldn’t communicate.
The research has been carried out by the Stroke Association to mark Aphasia Awareness Month and to encourage stroke survivors living with aphasia to use the information and support that’s available from the charity so they can navigate the challenges it brings.
The Stroke Association’s Communication Plus programme is a professionally led service that supports people living in Northern Ireland with communication difficulties following a stroke.
Using a range of creative approaches, their team works with groups of stroke survivors to improve memory, enhance communication skills and build confidence after stroke.
The charity’s latest survey also reveals people’s biggest fears if they lost their ability to communicate: 27% of people feared not being able to carry out everyday activities and the same amount also expressed concern about how it would affect their relationships with family and loved ones.
Around 19% feared being lonely while 12% were worried about not being able to express their emotions while 4% feared losing their job or their friends.
Juliet Bouverie, Chief Executive of the Stroke Association said: “Aphasia is incredibly common after stroke, affecting one in three stroke survivors. It robs you of the ability to talk to loved ones, to do everyday tasks such as go shopping, use public services or get online - things we all take for granted. People with aphasia often feel lonely and isolated too, which can impact their relationships.
“But there is hope and the brain can recover and adapt. Stroke survivors with aphasia can make improvements as well as developing alternative ways of communicating.
“It’s also incredibly important for the public to be aware of what aphasia is, the things to look out for and to learn strategies that might help those with aphasia living in their community. We all have a part to play in adapting our communication to be inclusive for all.”
If you or someone you know is living with aphasia, visit stroke.org.uk/aphasia for information and support.
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