Portrait: Dave Jones
I had a brain stem bleed in July 2017 at the age of 36, and a TIA 12 months later. Being young, fit and healthy they were both totally unexpected.
I’m a Stroke & Brain Injury survivor. I had a brain stem bleed in July 2017 at the age of 36, and a TIA 12 months later. Being young, fit and healthy they were both totally unexpected. I was a regional sales manager at the time of my brain stem bleed, and a young dad & husband. I lost 80% of my right-hand side, I had aphasia, emotionalism, and short-term memory loss. Through stubbornness and determination, I’m back to around 90% full strength, however fatigue, word searching, anxiety, emotionalism, and memory loss are still hurdles I must manage every day. I don’t call it recovery, I call this journey rebuilding as I am emerging into a new person.
How my rehab team supported me
I’ve been lucky enough to have a fantastic consultant, I was put onto the community neurorehabilitation team list and they have been amazing. They taught me coping strategies to help me manage my anxiety, and I now feel much more comfortable doing things such as going to public places. They explained the reasons for some of my symptoms, why my body is doing certain things at certain times and how the brain is rewiring itself. They have helped me by getting into rehabilitation programmes and groups such as Surfability, a local gardening group and down to earth project.
Meeting other brain injury & stroke survivors was a huge boost for me, if they can do it, so can I.
When I’m not working hard on rebuilding myself, I enjoy fishing, getting out on my motorcycle or my campervan and spending time with my family. Activities have to be planned ahead of time so I have the energy to do them. Doing activities with my son is always a highlight in spite of the fatigue that follows. Watching him laugh and run around means the world to me. It was a goal of mine after my stroke and I’m grateful to be in a position to do so.
My sources of support
My family has been amazing and so supportive, even when I’m ranting over something trivial, have a fatigue day, or when my anxiety levels resulted in us having to leave a place to avoid a panic attack.
The Lows: How rehabilitation could be improved
In the early days following my stroke, it was very dark. My thoughts were all over the place, why has this happened to me, will everything work again, what are the next steps. Although the NHS was fantastic, I feel that stroke recovery is set up for an older generation and not always appropriate for young stroke survivors. Six weeks of physical rehab and speech therapy were nowhere near enough. I’ve spoken with survivors who have slipped through the net and that is something that shouldn’t happen.
The Highs: What’s been successful
Following my stroke, with the help of a local stroke association co-ordinator, I’ve set up a young men’s stroke survivor peer support group. Since then, 20 male stroke survivors under the age 70 have joined and we meet once a month for a drink and catch up. To maximise interaction and further the support between the meetings, I also set up a WhatsApp group for the gents as a way to ask any questions or raise any concerns, which proved really valuable during Covid lockdowns. I’ve also been assisting other stroke survivors via social media, and after being told I’d never work again, I am now training to be a peer support worker at the age of 41.
I’ve proven to myself and family that there is life after stroke & brain injury. There are things that I’m unable to do at the moment, but they are just hurdles that can be overcome. There is always a way to solve a problem.
Also, I’m now able to assist other survivors on their journey. I’m not the guy with the magic wand, but the guy with the torch lighting up a path for them to look at. I do not have all the answers, but we can look at the path together and a think of ways of how move best move forward on this journey.
Advice from my personal experience
Keep going, you are doing fantastic! There will be dark days, but light always follow dark. Things will get better. Establish small goals as they are more easily achieved, and remember that small goals soon add up to bigger goals. Thank you to the carers and partners of stroke & brain injury survivors too. You’ve gone from families, partners, husbands, wives and friends to carers in the flick of a switch. For you it’s a thankless task, but it means the world to us.
As survivors we are on the same journey but in different vehicles or roads. We are rebuilding. You can do this. You have got this.