A West Lothian man was shocked after he was diagnosed with a debilitating condition after surviving a stroke. Aphasia came to the public's attention earlier this year when Hollywood superstar Bruce Willis was diagnosed.
But when James Rosie was diagnosed with the illness at the age of 51 neither he nor his wife had heard of it. June marks Aphasia Awareness Month and the condition, where a person has difficulty with their language or speech, is usually caused by damage to the left side of the brain. In James's case, the stroke.
People with Aphasia often have trouble with the four main ways people understand and use language. This includes reading, listening, speaking as well as typing or writing.
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James Rosie, is now sharing his story in the hopes of making Scotland more Aphasia aware. The 51-year-old from West Calder suffered a stroke back in 2019 and at the time, neither James nor his wife Joanne had heard of the condition.
Because of the 2019 events, James has been left with severe Aphasia making verbal communication almost impossible for him. Because of this, it is said to have completely changed his and his family’s lives.
Many people began talking about the condition after Hollywood star Bruce Willis announced in March he is now living with the condition. And now the couple hope they can raise more awareness by talking about what they have been through.
Chest Heart & Stroke Scotland (CHSS), who have supported the couple, estimates that around 2,400 stroke survivors are diagnosed with aphasia following their stroke each year in Scotland. However, many people in Scotland still don’t know what it is.
Speaking about the moments leading up to the life-changing event, Joanne said: “The stroke happened on March 30, 2019. We were going to Spain the next day. James got up as usual and went to the shops. Some hours later I had the police at the door, holding his wallet, car keys and phone.
"They told me he’d been in an accident, and they thought he’d had a stroke. The doctors at St John’s said it was a severe stroke, and he was in ICU for 24 hours because of swelling on the brain. James had no warning of what was going to happen. He only has a vague memory of turning on the engine, then not being able to do anything.”
Discussing about what they have had to deal with since the stroke three years on, Joanne is now helping James adjust to his new life alongside their son, Matthew, 16, with the family being told it's unlikely James will speak again.
After spending three months in hospital, James is now on medication for seizures that began a year after the initial stroke and sadly had to give up his job as a training officer to apprentices - a role he’d taken on after leaving a long career as a mechanical engineer with the NHS.
After being discharged, he had to adapt his home to his new needs from climbing the stairs to showering. However after coming back home and facing reality, it was said to be a frustrating and lonely experience for the pair.
However something that helped the couple was a weekly online Aphasia support group run by CHSS Lothian Community Support Coordinator, Lucy Bowman. Meeting other stroke survivors who all suffer from Aphasia is said to have helped James and Joanne considerably thanks to people sharing their own experiences.
Joanne continued: “The group is so good. James gets confidence from being able to take part in the quizzes and being part of a peer group. He’s seeing others who are all in the same situation as he is but at different levels and stages.
“They all now know each other and have an intuition about what each of them is thinking. It’s been such a positive experience for both of us.
“Life has changed so much, and it’s difficult. I have to explain all the time to people that James can’t speak, but he can understand you, so talk to him, not me. I feel there is little awareness of aphasia and stroke. Helping people to understand more about it would be so helpful.”
Jackie Slater, Aphasia Development Manager at Chest Heart & Stroke Scotland, added: “Aphasia can be very frightening and isolating. In an instant people’s lives are completely turned upside down by the condition, but many people have never even heard of aphasia until it affects them or a loved one. They’re forced to become experts overnight.
“With the help of people like James, who are bravely sharing their stories, we want to make sure that more people in Scotland are aphasia aware. Aphasia affects everyone differently, but by understanding what it’s like for people to live with aphasia, we can help to improve awareness and make sure people living with the condition feel more supported in their communities.
“At Chest Heart & Stroke Scotland, we support people living with aphasia and their families through communication support groups and 1-to-1 support where we help them maintain connections and improve their quality of life. Our support is tailored to each person’s needs and personal goals to help make sure they can live their lives to the full.”
The theme of Aphasia Awareness Month 2022 is #AphasiaTogether, emphasising that those with the condition don’t need to deal with this on their own. People who are part of the CHSS support group said that they are many things people can do and provided the following advice:
- Ask people with aphasia about their condition. Find out what their main challenges are and how you can help make communication with them and for them easier.
- If you are in a group with a person or people with aphasia, always speak one at a time. Take time to give the person your full attention.
- Aphasia is a disorder that affects processing and communication. It does not affect a person’s intelligence.
- Writing things down can be useful for some people, especially important details such as dates, times and arrangements.
- Hand gestures and obvious facial expressions can help some people with aphasia. Don’t be afraid to use these tools.
- Don’t be afraid or embarrassed by any silences or when communication is tricky. The priority for the person with aphasia is the interaction itself.
If you or someone you know has aphasia and needs advice or support, please contact Chest Heart & Stroke Scotland’s Advice Line. You can call 0808 801 0899 or text NURSE to 66777 or email adviceline@chss.org.uk.
For more information about Chest Heart & Stroke Scotland’s services visit their website www.chss.org.uk
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