A stroke volunteer’s story

Like many charities, AAA member Bristol After Stroke relies heavily upon volunteers to support their activities. Unlike many charities though, most of their volunteers have personal experience of the condition they are supporting…

Every year, Bristol After Stroke (BAS) helps hundreds of local people rebuild their lives following a stroke. They step in after someone is discharged from NHS support – and that support can carry on for weeks, months or even years afterwards.

Much of the work they do – including mentoring, counselling, activities and peer-support groups – is made possible by those who have had a stroke in the past volunteering their time, energy and experience to help others. That level of understanding can make a huge difference.

Andy Brewer is one of their very busiest volunteers, putting in an estimated 38 hours a month across a variety of activities… and often as much time again getting there and back on the bus as he doesn’t drive. Like many BAS volunteers, Andy himself is stroke-affected, so he is well able to empathise with the journey being taken by the people he supports.

“I had my stroke on 2 January, 2000 – the second day of the new millennium. Sadly, it wasn’t just a delayed hangover!” he adds ruefully.

“When I woke up I realised there was something wrong with my vision. I could see in two different directions at the same time… everything felt really weird. When I got out of bed I knocked over the bedside cabinet and banged into the wall. ‘This doesn’t feel right,’ I thought. My wife could see that one side of my face had dropped and immediately realised I’d had a stroke.

“I wanted to say that I thought she was right – but nothing came out of my mouth, but my speech did come back quite quickly. An ambulance took me Frenchay and I stayed there for several weeks. I remember very clearly while I was being wheeled to go for a scan, and I couldn’t read the signs on the walls. I asked the nurse why all they were all in Welsh…”

Memory lapses

While Andy’s speech came back quite quickly, along with his ability to read and write, he was left with a blinding headache… and atrocious spelling – which has never quite recovered.  “I also had some memory lapses, which continue. When my friend of almost 40 years came in to see me, I could remember him… but not his name.”

At the time, Andy had been working for Yellow Pages, running a team of artists at their graphics studio in Bristol as well as the proof-reading team. “It was a pressurised job, constantly meeting tough deadlines. And, for the three months I was home, I was really pleased to have extra time with my family… taking the children to school and so on.

“My employers were brilliant; and because they were so good I probably went back a bit too soon. My GP said that I was better and I could go back to work… although I didn’t really feel better. I realise now,” he adds, “that you’re never fully better: a part of your brain has died. I remember going back to work and being at my desk… and suddenly bursting into tears for no apparent reason. I still am very emotional and I know this is a common symptom.

“But, for the next 20 years, I never had another day off sick.”

As Andy says, while he can manage most tasks relatively simply, “It’s left me with lapses in memory, particularly around words and names… or I’ll say the wrong word for a colour. I also have a limited range of vision.”

In 2010 everything changed when his employer moved their graphics operation to Bangalore and he was made redundant. “In retrospect it was probably the best thing that happened to me – although it was scary at the time. I invigilated exams, worked for the census and electoral register, did some painting and decorating. And, when I hit the magic number, I retired.”

So how did the volunteering begin?

“That part of the story goes back to the 1980s. My father had several heart attacks and a stroke… in fact, he died from a stroke in 1989. He used to go to a group in Hartcliffe every week, run by what was then the Bristol Area Stroke Foundation… so even though I wasn’t referred to it when I had my stroke, I knew about the work it did.

“Moving on to 2016, my sister had a neighbour who needed her kitchen decorated. Over a cup of tea, she said she worked for Bristol After Stroke and they were always looking for volunteers… and that clicked. I’d always thought I’d volunteer when I retire – and try and continue to be useful. So I fitted that in with my paid work. When I retired, I could give all of my attention to that.”

Now Andy is busy on four days of each week, variously helping to run a walking football group, providing one to one mentoring, talking to patients and their families on the stroke ward at Southmead and helping out run various other groups right around the city. While most of these are in-person, on Wednesdays he volunteers with an online group for people with aphasia.

“It’s a two-way thing,” he insists. “I live on my own now. If I wasn’t volunteering, I’d have too much time on my hands. And activities like walking football are just so enjoyable. We have about 30 people on the books, and around 20 turn up each week – some with walking sticks. It’s such a great community. People come to walking football because they’ve had a stroke, and they stay because they’re playing football with their mates.

“When I was 40 I thought my footballing days were over. I didn’t imagine I’d still be playing at 68!”

Does he ever find it emotionally challenging? “What I do is a piece of cake really. Talking to relatives in hospital can sometimes be demanding… although you know you are helping people. It’s much tougher for the full-time staff who go to people’s houses. I’m a strong believer that we are all part of society and should do what we can to help each other.

“And I just love the culture of Bristol After Stroke,” he concludes. “It’s run by such nice, dedicated people – all working for the organisation for the right reasons. It makes me feel quite humble to be part of such a worthwhile organisation.

“The fact that so many service users have gone on to become volunteers shows what an amazing job BAS do. Once they too were emotionally and physically fragile – now they’re helping others in their recovery.”

You can find out more about Bristol After Stroke and the work they do here: https://www.bristolafterstroke.org.uk/

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