Alex was diagnosed with myotonic dystrophy aged 19. Learn more about his Snowdon climb and future adventures.
“Living with myotonic dystrophy won't stop me chasing adventure” – climbing Snowdon with a muscle wasting condition
When I set out to climb Snowdon for Muscular Dystrophy UK, our fundraising target was £500. I never imagined we would raise over £3,000. Seeing the fundraising total keep rising was overwhelming in the best possible way. Every donation felt like someone saying they believed in me and in the cause.
Climbing Snowdon was more than just a fundraiser
I did the climb with two of my university friends who’ve known about my condition since I was diagnosed 18 months ago. They’ve stood by me throughout it. I didn’t have to pretend it was easier than it was; they understood what the challenge meant, and their support made me feel more empowered.
I tried to train with a couple of long walks, but afterwards my legs would often be affected for two or three days. Training reminded me of my limits, but it also made me more determined. I knew Snowdon would be difficult, but I didn’t want fear to be the reason I said no.
On the day, we started climbing at about 6am and reached the top in around two and a half hours. It was quicker than I expected, but the steepness, rain, fog and wet ground was testing. At times, I had to focus on just putting one foot in front of the other. When we reached the summit, I felt exhausted, proud and emotional. The view was hidden by the weather, but the achievement was still there.
Coming back down was one of the hardest parts, especially on my legs as the decent was steep and we’d already used so much energy. But the weather improved as we were descending, which really helped. Reaching the top with Matthew and Finn beside me is something I’ll always hold on to.
It took me a while to become open about my disability
Looking back to my diagnosis, I’m proud of how far I’ve come to be able to raise awareness like this. I was diagnosed when I was 19 after genomic testing. I’d never heard of myotonic dystrophy or even muscular dystrophy. I was in my first year at university when I was suddenly told I had a disability; it was hard to take in. I felt relieved to have an explanation for why I wasn’t getting stronger even though I frequently went to the gym and had weakness in my hands, but also scared that the future I had imagined might change.
For a while I tried to hide my condition. Even struggling on trying to write all my exams by hand (which is the most affected part of my body). Eventually, though, I learnt that having myotonic dystrophy was nothing to be embarrassed by, and I started to advocate for myself, like asking for reasonable adjustments such as using a laptop in exams.
Today, the main impact is weakness in my hands. Opening bottles, putting keys in a door or writing for a long time are difficult because I don’t always have the strength I need. I also have swallowing and gastrointestinal issues. Those everyday moments are frustrating reminders that my body doesn’t always do what I want, but my mobility is still okay.
Since my diagnosis, I’ve wanted to make the most of what my body can still do. I love hiking, watching football and being outdoors. Which is why I wanted to push myself to do something big like this. I’m so grateful to everyone who supported us.
My next adventure is just around the corner
In September I’ll be travelling to Thailand to teach English. I’m super excited about my next adventure. Who knows, if I’m still able-bodied and healthy I may even find another mountain to climb!
What I want people to understand is that muscle wasting conditions are a huge spectrum. Everyone’s experience is different, and the future can feel uncertain. But a diagnosis doesn’t have to take away hope, ambition or the chance to achieve things that matter. Climbing Snowdon reminded me of that.
Support Alex's climb
By supporting Alex’s fundraising, you’ll help fund research and provide support for people living with a muscle wasting condition.
