'I knew nothing about stroke until I had one aged 43'
After a long process of recovery, Shaun Wilson tells Kathy Donaghy he is now on a mission to raise awareness about the increase of 'working-age stroke'
A stroke three years ago at the age of 43 turned Shaun Wilson's world upside down. Having returned to work earlier this year, he's on a mission to raise awareness about the increase of stroke in younger people and how, with the right help and support, you can get your life back on track.
It was during surgery to remove a cyst from his brain that Shaun (46), a father of two teenage boys from Co Donegal, suffered a stroke, in September 2016. He says he knew little or nothing about stroke until it happened to him.
According to the Irish Heart Foundation, a stroke occurs when a blood vessel, which is carrying oxygen and nutrients to the brain, bursts or is blocked by a clot. This causes an interruption of the blood supply to part of the brain. This can damage or destroy brain, cells which will affect body functions.
The term 'stroke' comes from the fact that it usually happens without warning, 'striking' the person from out of the blue. The effects of a stroke on the body are immediate.
Shaun remembers waking up in recovery from surgery with no power in the right-hand side of his body and slurred speech. He asked the doctors if he'd ever walk again. Immediately his thoughts turned to how he was going to pay the mortgage on the family home if he couldn't get out to work.
"The doctors told me that there are no two people the same and it was very hard to say what recovery would be like. I told them I wasn't looking for exact dates but what were their hopes. I told them I needed something to work towards," says Shaun.
After spending three weeks in Beaumont Hospital, he began a long period of rehabilitation - first in Letterkenny in Co Donegal and later at the National Rehabilitation Hospital in Dun Laoghaire, Co Dublin.
He has videos from the time on his phone showing his first attempts to put weight on his legs, which show just how far he's had to come. By January of 2017, he was walking with a stick and had to wear a splint. He puts a lot of his recovery down to being a stickler for doing the work. As well as the physiotherapy he got, he made sure he repeated the exercises he was given several times a day. He and his wife Doreen walked - even if it was only a short distance to start with - every day.
In February 2017, Shaun started going to the gym in a hotel in Derry City, half an hour away from his home in Fahan in Donegal. From Monday to Friday, he caught the 8.10am bus to the city, catching the midday bus home after spending time in the gym and the pool, which helped to improve his mobility.
He lifted weights to build up the strength in his right arm gradually and Shaun stresses that while progress was slow, the fact that others could see improvement really spurred him on. He found it exhausting and needed to rest as soon as he came home again.
"The first couple of weeks were the worst when I honestly wondered if I'd be able to do anything for myself. In hospital I was thinking too much," says Shaun.
He joined a support group in Letterkenny called 'Different Strokes for Different Folks' and found he was the youngest person in the group by a long way. His wife Doreen went to the group meetings with him and together they learned that working-age people all over the country, people just like them, were piecing their lives back together after stroke.
Shaun was finding concentrating on things hard. From TV shows to writing notes on the iPad, he just couldn't concentrate. Gradually and with practice, this improved. Fatigue was also a big issue. "Fatigue is not just tiredness - it's brain tiredness. You learn that when you're tired, there's no point in trying to do something. The rest is more important. Half an hour of sitting in quietness can do a lot," he says.
Before the stroke, he says his job for a motor parts company often saw him leave the house before 8am and not return till after eight at night. "At the time, I thought I'd no choice. Now I try not to let myself get too worked up about work. There's a lot more to life," he says.
Last September, Shaun had to take his driving test again. And in April, he returned to work with a different car parts company. "I count myself as very lucky. I'm a positive person and I think positivity helps. The people in your life help too. I'm still an early bird in the mornings but I'm home at 5.30pm. Ryan (16) and Oran (14) might have football and I'm here for that now. You take it all for granted until something happens. I feel lucky to have got to where we are now but it's a different life now," says Shaun.
According to the Irish Heart Foundation (IHF), 8,000 people are hospitalised every year after suffering a stroke. In the space of less than a decade, there has been a 26pc increase in working-age stroke, or the equivalent of 300 younger strokes a year. Meanwhile, new Public Health England data shows that almost four in every 10 first strokes now happen in middle age.
The IHF's head of advocacy, Chris Macey, says while improvements in stroke services in recent years have resulted in thousands of additional lives being saved, there has been no corresponding investment in community rehabilitation services. He says this means stroke survivors' recoveries are being squandered, with younger people particularly falling off the radar.
While the number of deaths has fallen, there has been a lack of investment in recovery and Macey says stroke survivors often find themselves back in the community with no access to services like physiotherapy.
"Psychological services are virtually non-existent. Our research shows that while there's at least 60,000 stroke survivors, there's less than €7m being spent on community rehabilitation," he says.
Another major deficit the IHF found in its research is the lack of supports to return to work after stroke, which meant that only 36pc of those affected were in work, compared to 88pc who were employed before their stroke.
"Employers want to help but they don't know what to do. Often people going back to work don't realise how difficult things will be. It's not like breaking your arm. People with young families are worried about the financial burden and they have to find ways around losing income," says Macey.
As part of a pilot programme, the IHF set up a support group to help younger stroke sufferers in Dublin last year. The group's co-ordinator, Helena Heffernan, says she's familiar with the struggles younger stroke sufferers go through after her own husband had a stroke at the age of 32 over a decade ago.
"There's no two people the same. Some people really struggle to accept what's happened, others are in denial. The group meets in the morning and it's driven by what the members want. At the same time, we are still doing exercises and working on things like balance and co-ordination.
"After the exercises, we go for coffee. We might sit down for half an hour or we could be there for two hours," says Helena.
⬤ You can get in touch with Helena Heffernan from the Younger Stroke Support Group by calling 086 130 0237, or get more information on stroke from the Irish Heart Foundation at irisheart.ie.
The Donegal stroke support group Different Strokes for Different Folks is on Facebook.
'I was told it was just a migraine'
Clíodhna Ní Bhroin from Killiney in Dublin suffered a stroke two years ago at the age of just 32. She says people should be aware that stroke can happen to anyone, regardless of age.
When she went to the GP feeling unwell, Clíodhna was told she had a migraine and was told to take an aspirin and rest. Her mother and sister weren't happy and called an ambulance. Scans showed Clíodhna had had not one but two strokes and needed a thrombectomy, a relatively new medical procedure to remove the clots.
Clíodhna had to learn to do everything again - from reading and writing to talking - and while she made good progress quickly, she still suffers from fatigue, a common after-effect of stroke.
She's hoping to return to work in software quality assurance in October but says the return has taken longer than she anticipated.
A year ago, she joined the younger stroke support group facilitated by the Irish Heart Foundation and it's helped her cope with the huge amount of change she's faced in her life since stroke.
"As well as the fatigue, I lost all sensation in the right-hand side of my body, although I do have the movement back. That's something that impacts on my quality of life. I've learned there's no timescale for these things - it's incredibly individual," says Clíodhna.
"It can be a very frustrating journey. I've had excellent support from friends and family and if I need something, I know I can ask. I realise that if somebody does or says something that hurts my feelings, I understand they're not doing it on purpose, they're just not aware."
For anyone in the early days of recovery from a stroke, Clíodhna says reaching out to a support group is a brilliant way of connecting with people who know what you're going through. She says it's also a good way to get your confidence back.
"I think I was a kind enough person before the stroke but I'm an awful lot kinder now. You never know what's going on in a person's life and I'm more philosophical now. I wouldn't have chosen it [stroke], but I've come out the better," she says.
Health & Living