Burnley stroke survivor supports Stroke Association to mark Aphasia Awareness Month
The fear of being unable to communicate has been laid bare in a new survey of over 2,000 people across the UK.
Research conducted by the Stroke Association reveals that nearly half of the respondents (43%) in the North West can’t imagine living in a world where they couldn’t communicate.
A world without communication is an everyday reality for stroke survivors like Simon Sharpe (44) from Burnley, living with aphasia – a communication disability, that is most commonly caused by stroke.
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 aphasia brings.
Aphasia can affect a person’s ability to speak, read, write and use numbers, but it does not affect intellect.
Simon knows better than most how aphasia can turn your life upside down in an instant, following his stroke three days before Christmas last year.
Simon was on the train to visit family for the holidays, when he noticed that the words just weren’t coming out properly when he spoke to anyone. After shrugging off the worsening incidents and saying he was just tired, Simon knew something was seriously wrong.
He said: “When I arrived the evening before I was playing with nieces and the words just kept getting worse. I told everyone I was fine and I kept ignoring it. The next morning I thought I felt fine but when I reached for my phone I thought the thing was broken as I couldn’t press the messages on it.
“My 12 year old niece came to me and I couldn’t say good morning to her – there was no sound, nothing. She was fantastic and luckily had learnt about stroke symptoms at school so she could call her mum (my sister) and an ambulance too.”
Paramedics arrived quickly and took Simon for tests at hospital which confirmed that Simon was having a stroke. Thankfully further tests meant he didn’t have to be operated on but doctors were unsure if he would be able to communicate again.
Simon was taken to a stroke ward and started speech therapy almost straight away and was even allowed home on Christmas Eve.
He added: “It was the best Christmas present ever from what had been the scariest thing ever. My two nieces were amazing and helped me say more words over the next couple of days, even if I didn’t know what they meant. I did more speech therapy in the New Year but it was a very slow recovery to get the words back.”
Now Simon, who runs his own Videography business, is adapting to his new life and deals with everything stroke can throw at him on a daily basis.
“Stroke effects every part of me - some days I think I’m doing really well and then other days I can’t even walk to the kitchen. Setting up my own company has been the best thing for me. I can now work to my own schedule and what my stroke dictates, for example I work much better in the morning when the fatigue isn’t as severe.”
Simon now wants to support the Stroke Association and raise awareness of stroke and specifically aphasia as he has experienced a lack of understanding from the general public.
“It was very frustrating at the start - I couldn’t talk, email or phone, I couldn’t communicate with anyone. I was going out to the shop and I could hear people talking about me, saying that I was drunk and, ‘isn’t it disgusting that someone is drunk at 10 am’. I left the shop feeling so frustrated.
“Not every disability is visible so anything I can do to make more people aware of this is a good thing.
“The first words that came out when I could start talking again was, ‘I want to try and help people’ and that’s what I’m hopefully doing.”
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. Get in touch with the Stroke Association to find out how we can help.
"Support for sufferers is also available through our stroke support groups, My Stroke Guide and communication support service.
“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.
The ‘Getting Online for People with Aphasia’ guide is available at: www.stroke.org.uk/aphasiaonline
My Stroke Guide is available at: https://www.stroke.org.uk/finding-support/my-stroke-guide