Karlyn’s Story – Ischaemic Stroke at 37
- Greg Hollingworth
My name is Karlyn, and I live in Hebburn, South Tyneside. I had a stroke at age 37 in July 2020. Before that I was a fit and very active person. In the years before the stroke, I had taken part in London Moonwalk, London Marathon, Great South Run and Great North Run. I was very fit, so the stroke came as a real bolt out of the blue.
I just woke up one morning, and when I tried to get out of bed, I collapsed on the floor, unable to call out or move. I later learned that the inability to speak would become aphasia, and affect my speech. Thankfully my former husband had just got in from a night shift, and came up to find out why I wasn’t up yet. Luckily he had some first aid training, and realised almost immediately what the problem was. He called 999 and a first responder was with us very quickly. She then assessed me and called for an urgent response from an ambulance.
I was so terrified while all this was happening, trying to make some sense of what was happening to me. My husband wasn’t allowed to travel in the ambulance with me, because of ongoing COVID-19 pandemic restrictions, so I was alone and really scared.
I was rushed to hospital where they administered thrombolysis to stabilise me and to break down any further blood clots. After that, I was on a ward, but I wasn’t allowed any visitors for twelve days. They set up video calls so I could see my family, but because of the restrictions it was very difficult. My parents lived on the South Coast, and immediately drove up to be near me. Once the restrictions started to lift, I was still only allowed one visitor for half an hour a day, so my parents couldn’t come in to see me.
I was in hospital for eight weeks, and in that time I had started to talk a little, and could just about walk but needed a lot of support. When I got home my mum stayed with me for two months, and Pa came when he could, as he was still working.
I was brought home from hospital and given some leaflets, but I was still bewildered, and had no idea what to expect going forward. A social worker came, and seeing my husband and mum there to support me decided he didn’t need to worry that I was at risk.
I would like to see a lot more support for stroke survivors leaving hospital. My physiotherapy was very limited, and basic. The speech therapy did go on for much longer, for which I am very grateful. I still really struggle though, because of the aphasia. It is a condition I had never heard of before. Since Bruce Willis was diagnosed with the condition in 2022, at least more people are aware of the it now. I had a very embarrassing situation in the year following my stroke. I was out with friends for lunch, and I was refused service for a drink, because the person serving thought my speech difficulties were caused because I was drunk!
I was also very disappointed with my consultant on my follow up appointment. When I asked about my immobile arm and hand he just said I would have to learn to live with that.
I have since learned through the Different Strokes community that there is no definitive recovery period, unlike the golden twelve weeks referred to by the NHS. I do have a few physiotherapy sessions a year, which my parents pay for, and from this I have improved mobility in my right leg, and some movement in my right arm, but my right hand is still paralysed.
Being unable to do my own hair is a source of constant frustration to me. I found the physiotherapy group myself, and I am frustrated that the support from the NHS is so limited. I have since learned through the Different Strokes community that there is no definitive recovery period, unlike what was a golden twelve weeks referred to by the NHS. I found out about Different Strokes because I was diagnosed with antiphospholipid syndrome (APS), and a video they supplied mentioned Different Strokes.
APS is a blood disorder that affects about 1% of the population. Unfortunately for me, the indicator that can point to APS , and despite multiple unexplained miscarriages, it never flagged up. APS support are campaigning to ask medical professionals to check for APS in any woman who has two consecutive miscarriages. If this had happened I may never have had my stroke.
I have been very happy to have all sorts of helpful information from Different Strokes, including information on Access to Work, which has helped me return to full time work. I also went to one of the in-person Different Strokes events last year.
I am very happy to be setting up a new support group, with the help of my mum and dad, Karen and Mark. I hope being able to meet up with other stroke survivors will be a positive and life enhancing experience.
My motto is ‘NEVER GIVE UP’. I try to exercise daily, and push myself as hard as I dare because I believe there is always a chance to improve. No matter how small the change, any change is good. In 2023 and 2024 I took part in the Great North Run (or steady walk in my case). I did need to get a bit of help from the support bus a couple of times, but I got to the finish line, and collected my medal on both occasions.
We are called stroke survivors for a reason.
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There are 100,000 strokes in the UK each year with 1 in 4 happening to somebody of working age or younger. Different Strokes aims to promote independent stroke recovery and help these younger stroke survivors reclaim their lives.
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