International Women’s Day (Friday 8th March) celebrates inspirational women within our communities, and Nicola Shaw from Ballygowan is the epitome of what it means to be an inspiration. Nicola had a stroke at just 44 years old and she is using International Women’s Day to share her story. Nicola hopes speaking out will help inspire other young stroke survivors to keep fighting on their recovery journey. She also wants to raise awareness that stroke is not something that only affects older people, it can happen to anyone, at any age, and that young stroke support could be hugely improved.
Nicola explains; “I had my stroke on Friday 16th December 2022. It was just another ordinary day, and I could never have imagined it would end with me having a stroke.”
“Over the course of 2022 I had started training, going to a spin class three times a week, a strength class three times a week, and a HITT class once a week. I had lost five and a half stone, so I was fitter, stronger and healthier than I had felt for a few years. I was at spin class the night I had my stroke. I was enjoying it, working hard and having the craic as normal but as I was walking down the corridor after the class, I had what I would describe as an out of body experience. It was as if I was looking down on myself and I was asking, ‘who is that with the floppy right arm?’. I tried to move my arm and it just flopped down. I also had right-sided numbness, pins and needles and my tongue felt like it didn’t fit in my mouth, like it was really badly swollen.”
“After a while it felt like whatever had happened had resolved itself, so I went out to my car - although it transpired this was just temporary. I started to drive home and was on a phone call when I became very aware I couldn’t speak properly. After I came off that call, I rang an ex-colleague who worked in nursing and explained what had happened. She said I didn’t sound like myself and with the symptoms I had experienced I should go to A&E to get checked out.”
“I got home and was quite upset at this stage. I explained what had happened to my husband, Darren, and we rang my mum to come and look after our two young sons so we could go to hospital. All was fine at that stage. I was still worried, but the functionality had come back in my arm. We set off for the Ulster Hospital and as Darren was driving, the symptoms I had experienced earlier came back but this time my right leg was also affected, and it felt really heavy which was frightening.”
Due to the COVID-19 pandemic, when Nicola arrived at hospital she had to go into A&E and face the next steps alone. “I had to try and explain to the receptionist what was wrong, but my speech was affected again so that was hard. I was called to triage within minutes and when the nurse was taking my blood pressure, she could evidently see I couldn’t use my right side at all. The next thing, I heard the urgent page for the stroke team and the nurse moved me into another room. A registrar and doctor came in and explained that because of my symptoms they needed to rule out stroke and I was being taken straight for a CT scan.”
“The first CT scan was clear so they repeated it with dye but that was clear too. By now my speech was back to normal but my right arm was still useless. The doctors therefore decided to treat me as if I had had a stroke, so I was given the clot busting drug Thrombolysis and was admitted to the stroke ward. Everything happened within an hour of arriving at hospital, so it was all quite shocking.”
“I had repeat CT scans over that weekend and they continued to be clear. MRI scans aren’t performed over the weekend, so it wasn’t until the Monday that it was confirmed I had suffered an ischaemic stroke which had been caused by a clot. To be told I had had a stroke in my early forties with no previous warning signs was quite unbelievable.”
Nicola continues; “At that stage I still had right-sided weakness, but I was able to move that side of my body. My movement was slow and weak, but I was determined I would keep on trying to do things. I was in hospital for five nights and when I was discharged I received no signposting, no follow up appointments, nothing. The message seemed to be ‘you have had a stroke but you’re not too bad so on you go’. I was shocked by that and I think how I was dealt with upon discharge could have been better.”
Nicola contacted her GP surgery once she got home but unfortunately received no immediate support there either. “When I rang my surgery, I was told that because it was so close to Christmas they weren’t taking appointments and I was to ring back in the New Year. Even when I explained I had just had a stroke I still couldn’t see a GP. It felt scary and isolating - I was ok, but I wasn’t ok. From the health service’s perspective, I had a minor stroke, but it had a major impact on mine and my family's life.”
Back at home Nicola started her recovery journey but the impact of the stroke was life-changing. “I was a really active person before the stroke. I wasn’t long started a new job, I was exercising lots, I was planning travels and then suddenly I was at home, not able to do very much. I was really fatigued, and I struggled with that. The post stroke fatigue was like a brain fog for me, particularly around word association. It was like my brain had gone, there was nothing. It was a black, dense nothingness.”
“I was also quite affected sensory processing wise and it was really hard with two young boys and the noise that comes with them. I couldn’t cope with unexpected loud noises. I was signed off work to recover and at first I was lucky if I could do just one thing a day, like have a friend come and visit for an hour.”
With no support forthcoming from statutory services Nicola started looking for alternative organisations who could help and came across Northern Ireland Chest Heart & Stroke (NICHS). “I made direct contact with the charity and Dawn Beckett was assigned as my Care Services Coordinator. The first step with NICHS is their Family Support service and Dawn phoned me, so she could talk to me and understand my particular set of circumstances and offer the support that would be best suited to me.”
“Dawn was a listening ear which was great, but she was also able to signpost me to practical support offered by NICHS such as their Return to Work Programme as well as putting me in touch with a fellow charity to avail of their befriender service and stroke counselling service. It was such a big help to have Dawn coordinate all this, particularly in the early days after a stroke when everything is so tiring.
“Dawn also introduced me to two young women within the local area who have had strokes. To see that I was not the only one that something like this had happened to and that life goes on was so helpful. It has made me feel less isolated and it is reassuring to talk to others who have walked this path and understand what it’s like.”
“Later on in my journey I decided I wanted to give something back for the support I had received so I decided to do some fundraising for the charity. I had originally planned a ‘Strokeaversary’ party for 16th December 2023 but unfortunately, I wasn’t well and had to cancel it. I did go ahead with a raffle I had planned however, and this raised £2,138, half of which was donated to Northern Ireland Chest Heart & Stroke. It was really important to me that the stroke had meaning and purpose and for me to make a difference because of the stroke.”
Another way Nicola has been making a difference is by highlighting to the health services how the support she received as a young stroke survivor was inadequate. “I fed back to the medical team that what they class as a minor stroke can have a major impact on the patient, particularly psychologically, something which I felt they had no understanding of.”
“I also highlighted that young stroke survivors’ goals will be very different to those of an older person who has had a stroke. I was trying to get back to things like work, a high level of activity, being a properly engaged mummy and the services I received, or rather didn’t receive, as a younger person affected by stroke were just not reflective of that. Even the fact it is a geriatric stroke ward and geriatric stroke service within the South Eastern Trust shows how younger stroke survivors aren’t considered enough. Yes, the number of older people having strokes may be higher but there is still a sizeable and ever-increasing number of people in the younger age groups affected by stroke and they deserve to receive the specific support they need too.”
“After highlighting all this to my doctor he committed he would take forward a quality improvement initiative, so I am hopeful there will be improvements made for future young stroke survivors. People aren’t always getting the support they need when they need it, or when it might have optimum and maximum impact. Charities like NICHS are having to fill that gap.”
Nicola continues; “People's false stereotypes of what it looks like when someone has a stroke, or the type of person that has one, is something I have become really aware of since my stroke. I always get people saying, ‘you are too young’ or ‘you don’t look like you have had a stroke’. People have this misperception that because I don’t have a droop in face or because my speech isn’t slurred etc that I can’t have had a stroke. For me it has been useful to be able to raise awareness and highlight to people that you can have a stroke at any age and stage in life. As a society we tend to think stroke is something that only affects older people and that needs to change.”
Nicola recently had surgery to fix the cause of her stroke – a hole in her heart. “Finding out why I had my stroke was important to me and after a number of investigations it was discovered I had a PFO (Patent Foramen Ovale). This is a hole in the heart which can trigger strokes and is often the cause for younger people.”
“I had closure surgery on December 21st 2023, almost a year to the day of having my stroke. I had a 25-millimetre device implanted in my heart which closes the hole that allowed the clot which caused my stroke to travel. I now know I'm not at risk of a further ischaemic stroke and it’s comforting to know the same thing can’t happen again.”
Thankfully, Nicola has recovered well from her surgery and is looking to the future. “Here I am, eleven weeks after the procedure and things are good. I have so much more energy, I’m back training and at the end of February I got back into employment working as a Senior HR Consultant.”
“I would describe last year as being about survival and recovery but this year it feels like it is about moving forward and that every day doesn’t feel like climbing a mountain. It feels like some sort of normality has returned. Other people say I’ve got my spark back. I used to be exhausted from just having a conversation, but now I just feel like I’m me again. Before the procedure my progress was slow and steady but after it, I have made some huge leaps forward. 2024 just feels like the stars have aligned and it will be a great year for me.”
Nicola concludes; “I don’t necessarily feel lucky that I had a stroke, but in a way I'm really lucky in terms of my recovery from the stroke. I know other people don't recover so well and I now have my eyes wide open to what life’s priorities are and what is important.”
“The jigsaw puzzle of how my life was before the stroke is now coming back together. It's different but that doesn't mean it's worse. There will be up days and down days but now there are more up days which is good. When you go through something traumatic like a stroke you will of course be affected by it, but it doesn’t always have to be in a solely negative way. Yes, there are some negative things and I’ve been through some really tough times but I’m still here. I’ve got my kids, my husband, my family, and my friends. I just try to find the positives.”
Ursula Ferguson, Director of Care Services at Northern Ireland Chest Heart & Stroke comments; “We are so thankful to Nicola for sharing her story and raising awareness of young stroke. People may be surprised to learn that 50% of stroke survivors in Northern Ireland are under 75.”
“Having a stroke is a life-changing reality for thousands of people in our local community every year. As well as the negative impact on physical wellbeing, stroke can reduce independence, confidence, and happiness. Stroke can also affect relationships, take away jobs and careers and render some families isolated within their own homes- but NICHS is here to help with expert care and support.”
“The help available from our Care Services team is extensive and includes PREP our physical rehabilitation programme, young stroke groups, family support, health education programmes, our Wellness Sessions and emotional support.”
“Our team works across Northern Ireland with people of all ages affected by stroke, alongside their families and carers. They are dedicated to supporting people in adjusting to life with a stroke condition, helping them to enjoy life to the full, re-engage with hobbies, and improve their confidence, independence, and overall quality of life.”
If you have been affected by stroke and need support visit https://nichs.org.uk/stroke-support for further information about Northern Ireland Chest Heart & Stroke’s stroke support services.
