Stroke survivor shares life-changing impact of aphasia

James Rosie, 51, of West Calder, West Lothian, suffered a stroke in 2019. At the time, neither he nor his wife Joanne had heard of aphasia – a condition that can affect the ability to speak and understand speech and to read and write.

This June, Aphasia Awareness Month, James is sharing the devastating impact the condition has had on him and his family to raise awareness of the condition in Scotland.

We estimate 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 aphasia is.

No warning

There was no hint of what lay ahead for James when, excited about the family’s upcoming trip to Spain, he headed off to the shops for some last-minute purchases.

When he got back into his car, James turned on the engine but found himself unable to move. He had suffered a stroke.

“The stroke happened on March 30, 2019,” explains Joanne. “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.”

Unlikely to speak again

James spent three months in hospital. When he was discharged, it was to a home that had to be specially adapted for an active man who now struggled to use the stairs and general day-to-day activities in his home such as showering.

The consultant told Joanne that James was unlikely to speak again. This was the first time either of them had heard of aphasia. Around a third of all stroke survivors have aphasia, which doesn’t affect their intelligence but their ability to communicate.

Being discharged from hospital to the reality of life at home, with limited support, was a frustrating and lonely experience for each of them.

What changed was joining the weekly online aphasia support group run by Chest Heart & Stroke Scotland Lothian Community Support Coordinator, Lucy Bowman.

Group is a lifeline

Meeting other stroke survivors who all suffer from aphasia has been a boon for James, while joining in with partners and carers has given Joanne the support and confidence she was missing.

“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,” says Joanne.

“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.”

Raising awareness

Three years on, James is still living with the consequences of the stroke. As well as having severe aphasia, which makes verbal communication almost impossible for him, and he is on medication for seizures that began a year after the initial stroke.

Joanne, who works full-time for RBS, and son Matthew, 16, are now helping James adjust to a new reality. Aphasia has completely changed the family’s lives, but they’re determined to work through it together and raise awareness of the condition to help other families like theirs.

Jackie Slater, Aphasia Development Manager at Chest Heart & Stroke Scotland, adds: “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.”

To find out more about accessing our support services, please visit chss.org.uk/services