Paul's Story


"Some of my earliest memories of time spent outdoors take me back to Alaska and the Yukon Territory in Canada where I travelled there when I was 12 with my family to stay with my uncle as my Nan had just passed. We spent the 9 months of our visit fishing and hunting and camping and learning all about the different plants and animals around us. Not every day was great out there; we faced a lot of hardships. But for me I think I naturally have an optimistic outlook on life, so I chose to hold on to the adventures we had rather than the challenges.

My connection with nature deepened further as I moved into my teenage years. Sure, I found is difficult to be as awe-inspired by the landscapes back in the UK, but I kept myself busy with camping holidays, cycling challenges, and collecting interesting finds along the way. My uncle here in the UK was the president of the falconry society and I met Jemima Parry-Jones after school each day I’d go and read img the first captive bred Peregrine Falcons , I can still remember breeding and releasing some barn owns. The descendants of those birds still live in the area. I love to go to the release sites and sit for hours watching and always spend hours immersed in it all.

I went to Merist Wood college I did a course in woodland management and enjoyed every minute of it. I knew I wanted to work with nature, and took up a job in the field. It was around this time, in my early 20s, that I stayed to notice the symptoms of Huntington's Disease. When I was 15 my mum had told my brother and I that it ran in the family, but i hadn't paid much attention to it until i started to realise things were changing for me.

Initially it was the cognitive side of things that i started to struggle with, though a few years later (12.5yeard ago) I had a sort of mini stroke that set things on a downward trend. I lost my voice for 3 months after the incident, though thankfully it returned!

Later I moved into car sales and worked at a Farrari garage, basically as the sole employee. It was seriously stressful having to manage every aspect of the job, whilst dealing with an unsympathetic manager who had no respect for my boundaries or developing disability. My head started to fail very quickly as the stress escalated the situation. My shoulder would throb and not work properly due to being over used at work, and I accumulated a number of work-based injuries. I was in constant pain, both mentally and physically.

I was able to escape from time to time. I took a break in Sweden with some friends and we spent our time kayaking on rivers, camping and adventuring. It transformed me into a whole different person - into me! I also found joy in collecting vintage bikes and cycling. I would ride for hundreds of miles each week, though as my legs and arms got worse with the Huntington's I had to let this go.

My HD has been progressing over the last 23years. Until recently it wasnt consistently painful, but these days it effects everything I do. I now am unable to work but I do my best to stay positive about it. Getting outside is so important to me, and no matter how things turn out, I will always keep that as a priority."

What goals do have you in the future or are you currently working towards? 

"I have always wanted to camp in the snow! To climb a mountain like Snowdon or Ben Nevis, and make a real expedition out of it. I'd also love to visit Matchu Pitchu or travel to Tasmania. I dont think my legs will work for much longer. Maybe after a couple of years they will loose their strength and I will be much more limited in what I can do. It's a really hard thing to process, but right now I am set on making the most of every day and taking opportunities as they come my way."


What advice would you give someone facing a similar situation? 

"I would encourage anyone struggling with HD or similar to get outside as much as you can. Even if you cant move lots, tey to get to places that offer a sense of calm and connection. For me I love water. Nature offers the opportunity to loose yourself and see all your problems quieten down for a short while. The immersive experience allows you to feel free and helps you to smile."