Life is turned upside down after Matt suffers a stroke aged just 40

Matt and Caroline Cooke, from Hillsborough, were relaxing on an ordinary weekend, when life as they knew it changed completely after Matt suffered a stroke at just 40 years old.

Caroline recalls, “Matt had his stroke on August 31, 2020. We were in Fermanagh as we had a boat down there just outside Enniskillen. We used to go every weekend and that was how we relaxed.

On the Sunday we were due to come home, and we were packing things up to put in the car. Matt went to the car and the next thing I was getting missed calls from him. I was still on the boat cleaning up. He said, ‘can you help me?’ which was very unusual. I went up to the car and then I noticed he had pretty much fallen over. He was dizzy, but he wasn’t displaying symptoms of a stroke at that stage.”

“From there, it got gradually worse and I phoned an ambulance. They went through the FAST symptoms on the phone with me and during that process, Matt’s face started to droop and that was when I knew it was a stroke.”

Hillsborough couple Matt and Caroline Cooke

Matt was taken to the South West Acute Hospital in Enniskillen. Caroline recalls, “He was taken away and it was several hours of waiting before I heard anything. I was on my own and thankfully, as I work in the ambulance service, I was able to get someone to sit with me who could go in and out of A&E and find out what was happening.”

“The details aren’t that clear now of exactly what happened, but I know they were trying to do Thrombolysis, but Matt kept being sick, so they couldn’t. There was talk of him being brought in the Air Ambulance to the Royal Victoria Hospital as it was there for another reason, but in the end, he was blue lighted in an ambulance to Belfast. Overnight, his brain began to swell, and I got a call on the Monday morning to come in urgently as we needed to decide whether or not to perform an operation - a craniectomy. It was absolutely awful and terrifying.”

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Matt says, “It was very scary when the symptoms began, but by the stage I was in the hospital, I didn’t know much, I was pretty much out of it.”

As Matt began to recover Caroline wasn’t able to visit regularly due to the ongoing COVID-19 pandemic. “At first, I was allowed in for one hour every day in the ICU, but when Matt moved to the ward, it was one hour, once a week for a very long time”, Caroline recalls.

In total, Matt was kept in hospital for almost a year. He remained in the Royal Victoria Hospital until October 2020, then moved to the Ulster Hospital for intense rehab before going on to the Brain Injury Unit at Musgrave Hospital.

When Matt first came around after his stroke he couldn’t speak due to damage to his vocal chords from being intubated, and he was also paralysed on his left side.

Caroline adds, “He couldn’t swallow, couldn’t eat, couldn’t go to the bathroom by himself. Now he’s been left with left sided visual field deficit, which affects his ability to drive, and his left arm has never shown any function. With his left leg, he has tried really hard at his walking, but it doesn’t bend by itself. It’s much better now and he can walk using a stick. The stroke also had a big effect cognitively. Matt’s long-term memory is amazing, but his short-term memory really suffered. He also can’t cry anymore which is one of the stranger effects. At the start, he couldn’t remember the days of the week or even do one plus one, so he’s come a long way!”

When Matt was finally able to go home in March 2021, it was a big step forward, but also a huge challenge for the couple. Caroline recalls, “There was no care package in place. The hospital phoned and said Matt had to go home - we had to start figuring out what to do. We were about to move into a new house and were a couple of days away from signing the contract, but the house fell through as I couldn’t sort it on my own while Matt was in hospital. I was living with my mum and dad - so where was Matt going to go? Our only options were either we made room at my mum and dad’s house, or Matt would go into a home. Luckily my parents are very understanding, and they made it work.”

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“I took a month of leave from work and my mum and I cared for Matt. It was six weeks before we got a care package in place. When Matt first came home he couldn’t do anything for himself, so it was tough.”

When Matt was still in hospital, while researching strokes online, Caroline came across Northern Ireland Chest Heart and Stroke (NICHS). Caroline got in touch with the charity and was referred to their online Carer’s Education Programme.

She says, “Matt was still in hospital and the programme gave me an idea of what to expect as a new carer. We heard from pharmacists about drugs and prescriptions, and there was information about benefits and all sorts of other topics, which was really helpful. It was also nice to have the social element too - you could ask questions of other carers who were further on in their journey.”

Once Matt had left hospital and completed his statutory rehab, he took part in NICHS’s PREP programme (Post Rehab Exercise Programme) in Lisburn.

Of the programme Caroline says, “It was absolutely the best thing ever. It got us both out to do something together and it gave Matt a purpose. He met people of a similar age, people he could talk to who were like him and understood his journey. All the volunteers and staff are lovely and make you feel like part of a family and so welcome. Matt would be anxious about meeting new people but after the first week he couldn’t wait to go back.”

“The fact that Matt is a young man, and this happened when he was just 40 has been so tough. He can no longer work as a joiner which makes him so sad. All his social activities were outdoor, we would have gone down to the boat and went out socialising. When he came home, there was nothing he could do, and we lost all our social activities. It was very isolating. PREP came around and offered something different. It was interactive and showed your improvement each week, which really helped Matt.”

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Keeping families connected at A&E

What is one message Caroline and Matt would give to someone facing a stroke? Caroline says, “Positivity, belief and having hope is so important. Everyone’s recovery is different. The health professionals might say you won’t recover any further after six months, you’ll plateau, but Matt is still improving now. Just believe in yourself and stay positive.”

To find out more about Northern Ireland Chest Heart and Stroke’s work and the support they offer, or to make a referral to get support, visit www.nichs.org.uk/our-support-services