Skip to content

‘I’ve cycled halfway round the world with FSHD’

Mick Swales is a lifelong cycling fanatic. He didn’t let being diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) at 32 stop his love of cycling and has travelled the world on his bike. At age 84, Mick still uses a specialist bike at his local hospice gym to continue his hobby and keep fit.

An elderly man in a wheelchair with feet on pedals and hands on a handlebar

I regularly attend my local Hospice (Arthur Rank Hospice Charity in Cambridge) for sessions at the Living Well Service and they have a great gym for people like me. One of the Medimotion bike machines has a screen on it and you can choose a ‘route’ to take. One time a Physiotherapist put it on for me, I felt as though I recognised the road. It was just like cycling across South Africa from Johannesburg to Cape Town; a bike ride I had physically done decades ago! I was transported back to that moment and it was so lovely to be flooded with those memories. Now I regularly go to their gym and enjoy reminiscing.

How my love of cycling began

I’ve been riding a bike for as long as I can remember. From about two years old, I would sit in the kid’s seat on the front of my Mum’s bike. Swinging my little legs and kicking off my woollen booties, singing The White Cliffs of Dover.

Being born in 1940 to a hardworking family, we all used a bike to get around the same way everyone uses a car now. My dad taught me to ride when I was seven. It was pretty tough at first; I drove into the only parked car on the street and fell off. But once I’d got it there was no stopping me!

Gaining momentum

My first big rodeo was just before I turned 18. Myself and three friends rode tandem bikes across Belgium to Germany. I’d fractured my left thumb ten days before, but I was determined to ride across Holland no matter what. I was regularly the British Cycling Federation (BCF) East Anglian Team Pursuit Champion for four years in my early adulthood along with my brother and another lad.

Mick Swales receiving a cycling award. It is a black and white photo

I loved racing, but sometimes it was simply a way to get places quicker. One night I had plans to go out with my girlfriend after work and didn’t want to be late for her. As the bus passed me between Cheltenham and Cirencester they clocked me. I was doing 40 miles an hour the whole way home. If I’d done that in a 25-mile time trial I would’ve been the National champion.

Try, try and try again

I was part of the Cambridge Cycling Club as a teenager and did my first 25-mile time trial at 14 years old. The aim was to complete it in under an hour, but I never quite managed it. I did five to ten different time trials and got very close, but I didn’t know at the time I had FSHD.

“The night before my 12-hour time trial I felt my back twist. I rode 10 hours the next day with a slipped disc and did 222 miles, roaring round the finishing circuit.”

Being diagnosed with FSHD

I collapsed randomly one Christmas and had to spend three days in bed because my body felt so exhausted. When I went to see a physio, he noticed there was something wrong with my right shoulder.

Shortly after that at our weekly pub and darts night, I was scoring 180’s and all of a sudden I started to throw the darts into the wall. I was losing control in my shoulder.

After being referred to a neurology clinic, they sent me for a muscle biopsy. I was diagnosed with FSHD at 32 years old and it turned out my mother had the same condition. She’d been troubled for a long time with it, eventually she was in a wheelchair but wasn’t diagnosed until I was.

Learning to do things differently

I was already used to riding tricycles, so I carried on with those and learnt to adapt.

“I won the over 40s disability award after completing a 50-mile race in two hours 20 minutes.”

As my condition progressed, I had a few more accidents. One time I tipped the tricycle over and had to have 27 stitches in my head. But I always got back on the saddle because I love the thrill of cycling.

A colour photo of Mick on a bike with three wheels

“I’ve cycled thousands of miles and been halfway round the world – New Zealand, South Africa, France, Belgium, Holland, Morocco, the Atlas Mountains, Spain, Italy, Germany, Gibraltar.”

I’ve done all sorts. I just had to learn how to do things a little differently.

Stay connected with our community

Get the latest news, inspiring stories, upcoming events, and valuable support services delivered straight to your inbox.