Andrew's Story - Stroke at 21

As a 20-year-old I left South Africa for England hoping to eventually pursue my passion in comedy or film making. After a few months working at an activity centre for children on the Isle of Wight I made the move to London, eventually living in Willesden Green in a house with more than twenty other young travellers, mainly from South Africa, Australia, New Zealand and the USA. It was a fun time of my life, filled with new experiences, new friends, karaoke and travelling.

It was in this shared house that I had my first stroke. It was the middle of the night and I woke with the worst headache I had ever experienced. I had no other symptoms, took some pain pills and went back to bed. My girlfriend could not wake me properly in the morning but left for work as it was her first day at a new job. She was sufficiently concerned though to keep phoning me throughout the morning. Eventually, when she couldn’t get an answer on my mobile, she called the house phone. A flatmate answered, checked on me and told her I was fine, just sleeping. I recall my work calling me and me not being able to speak clearly to them. It was midday by the time my girlfriend got through to me on my mobile – and when I called her the wrong name and she realised I was not joking – she knew something was not right.

An hour later we were walking up to the GP surgery, still not aware of how serious things were. The surgery was closed so we headed in a taxi to the nearest A&E where it took some time to convince the doctors that I had not taken any drugs or been drinking. My words were coming out wrong or not at all. We were sent to Charing Cross Hospital and it was there that the doctors explained I had had a stroke due to an arteriovenous malformation (AVM) that had bled in my brain. When we asked how the doctor could be sure it had stopped bleeding he said if it had not, then I would be dead.

This was my first experience of stroke. I was 21 and suddenly in a hospital ward surrounded by much older people and unable to communicate. I had never heard of an AVM and the only stroke I was familiar with was heatstroke – not something you expect to get In England.

I had surgery to remove the AVM and a recovery period of about 2 weeks in hospital. Physically at that stage I was fine and the only therapy I required was Speech Therapy. While in hospital we decided that returning to the large shared house was not the best option and I moved to a smaller flat in the same area with my girlfriend and two closest friends. This was the start of my shrinking social circle. At least part of this was my own choice as I was embarrassed about seeing people when I could not speak properly.

I started seeing the speech therapist on a weekly basis and also travelled into London to the then charity UK Connect, where I met with a stroke survivor who was also a counsellor. I got back to travelling and three months after my stroke visited Paris with my girlfriend including enjoying rides at Disneyland. I was starting to think I would be able to return to my job in computers.

I have always been keen on exercise so had returned to the gym quite soon after my stroke. Three or four months after my stroke, I decided to introduce my girlfriend to the gym. I was explaining a piece of equipment to her when suddenly my words came out just a little slurred. It was enough of a change to make us a little concerned but not enough to stop us from walking the 10 minutes home. As I got back to the house and up to my bed to lie down my right arm and leg “went”. I can remember my fear as I realised I was having another stroke. I woke up in Charing Cross Hospital where I needed further surgery – a part of the AVM had apparently been hidden and not removed in my first surgery. This is something I still feel frustrated by. This stroke was major – it had even more of an effect on my speech, reading and writing but also left my right arm and right leg paralysed.

I spent two months in Charing Cross Hospital before being sent to the Regional Rehabilitation Unit in Northwick Park Hospital for another 8 months of rehabilitation. I received daily physio; occupational therapy and speech therapy. There was also psychology (something I am not a fan of) and art therapy. While the physiotherapist worked on normalising my tone I was not allowed to walk and spent several months in a powered wheelchair. My right hand did not recover movement and my therapy goals were then focussed on being able to walk. My speech, reading and writing were significantly limited. I struggled with names of people and objects. The OT (Occupational Therapist) tried to help me practise my writing on the computer but I required help to put the sentences in my head down in writing.

A third stroke halfway through my hospital stay resulted only in a major headache. It took several days of me complaining about it for the doctors to send me for a scan as they didn’t believe I would have had another stroke. But I was convinced. The scan showed another bleed and back they sent me to Charing Cross for yet another removal of a previously hidden part of the AVM.

This experience led me to worry a lot about headaches for the first few years after the last bleed. As time went by and I had “normal” headaches the worry lessened.

After discharge from the rehab unit I moved to Aylesbury where life would be a little quieter and easier than London. At that stage I was walking indoors but still being pushed in a wheelchair outdoors. I got to know my surroundings through trips to appointments on Dial-A-Ride – another service that has disappeared over the years.

I have now lived in Aylesbury for 18 and a half years. I married my girlfriend three years after my strokes and we have 2 children. I have made good progress in many ways since my strokes – I have learned to do many things with one hand, I can walk more easily although still use my stick. My speech has also improved quite a lot but I would still say that aphasia is my most significant and limiting disability. My wife is writing my story for me. I have the thoughts in my head, but the sentences do not come as I want them to either in speech or in writing. I still have difficulty with names – something that makes social situations difficult.

But my memory is excellent – I can remember small details from many years ago, my intelligence is unaffected, it is simply not always possible to get the right word out of my brain.

Aphasia has also made it extremely difficult to find a job. I love children and have volunteered in classrooms, but I have not been able to find a job that allows me to do the things I am good at without having to also manage reading and writing.

I also hoped to work as a counsellor – having been seen by a stroke survivor who was a counsellor after my first stroke – however again my aphasia meant that I could not cope with the course. I do work as a midday meal supervisor in a school and the feedback I get about my way with the children from my fellow midday meal supervisors is great. But that doesn’t translate into opportunities or at interviews.

Most of my time I spend looking after my children, meeting up with other stroke survivors at the support group I set up – Strike Back, and working on our house and garden. This is not the life I imagined when I moved to England in 1999. My family and friends tell me I have achieved a lot but it is hard not to feel depressed that I cannot do more and cannot work doing something I enjoy. I honestly believe that I could have moved forward better if I only had a paralysed arm and weak leg to deal with. The aphasia is the hardest and least understood disability. I am amazed by how little awareness there still is about aphasia.

I do get down; sometimes angry and frustrated. I help to manage my stress levels by walking on my treadmill every day. And when I get angry I have learnt to walk away and leave the situation. I also like to have something to look forward to and to keep busy so spend time planning changes to the house or garden and planning holidays.

I remain determined to find a job that I will enjoy and that I can do full time. Determination (or stubbornness) is what has helped me become as independent as I am and I will keep trying until I achieve something that makes me happy that is just for me. I love my family and I am happy about the time we have together but I think everyone needs something that is just for them and meaningful work would fill this gap for me.

As England went into lockdown I found myself feeling more down and isolated. It pushed me to start phoning more friends and family than I usually would. I have also tried some video conferencing sessions and reached out to more support groups on social media. It was through Facebook that I discovered Different Strokes. I find the posts from other stroke survivors help me to not feel alone although some are too long for me to manage to read due to my aphasia. I find the videos are easier

The advice I would give anyone else who had a stroke resulting in aphasia is to make every effort to be in situations where you have to talk to people. Do not let your partner or carer hold all the conversation on your behalf. Over the years I have made myself go out and I have found some situations – like the local church coffee shop and a local group – where I feel comfortable enough to chat to people even if my speech is not perfect. This has really helped me speak more easily over the years. I would say the same about the other aspects of stroke actually – the more you try and do yourself the more you are able to adapt and learn new ways of doing things.