About twenty years ago, Hayley and I completed the Yorkshire Three Peaks Challenge. It came up in conversation with some friends recently and I found myself thinking about the things I used to be able to do. Somewhere in that conversation was a thought I didn’t particularly like.
I couldn’t do anything like that now.
FSHD had changed things. I wasn’t as strong as I used to be. Walking long distances was harder. The idea of taking on a serious physical challenge seemed to belong to an earlier version of me. Then another thought appeared. Why not?
Maybe not the Three Peaks
Let’s be clear. I had absolutely no desire to do the Yorkshire Three Peaks again. Twice is quite enough.
But perhaps there was another challenge I could take on. The Cleveland Way seemed like a good candidate. A lot of it is reasonably close to where we live in North Yorkshire and, despite that, I’d walked surprisingly little of it.
So I developed a wonderfully romantic plan. I’d walk about three miles — 5km — at a time, probably with the dogs, and gradually make my way around the whole thing. Lovely.
There were just a couple of minor flaws in the plan. The Cleveland Way is more than 100 miles long, so at three miles a day I’d need more than 35 walking days. And because it’s a linear route, every one of those little walks would involve somebody getting me to one end and somehow retrieving me from the other.
I hadn’t really thought that bit through. In truth, I hadn’t really thought any of it through. And so my grand Cleveland Way adventure, which I originally imagined starting in October 2025, didn’t happen.
Then something started to change
In April 2026, I started walking with Hambleton Athletics and Running Club. Initially, even relatively short walks were challenging. Gradually I started getting stronger.
More importantly, I started becoming more confident about what I could do. Then Hayley, our friend Bev and I went for a walk which included part of the Cleveland Way. We walked about seven and a half miles. That mattered. If I could walk seven and a half miles, perhaps my slightly ridiculous Cleveland Way idea wasn’t quite so ridiculous after all.
Perhaps I didn’t need 35 days. Perhaps I could actually do this.
I mentioned the idea to my mate Richard. I was expecting something along the lines of: “Rather you than me.”. Instead he immediately said he’d like to do it with me. I’m not entirely convinced he’d thought that through.
A commitment to myself
Every year I attend the FSHD Engagement Day at the John Walton Muscular Dystrophy Research Centre in Newcastle.
I have a small role towards the end of the day. After we’ve heard from researchers, clinicians and others involved in FSHD, I bring the attendees together for the final session. I ask them to think about what they’ve heard. What are their takeaways from the day? Most importantly:
What commitment are they going to make to themselves?
On the drive up to Newcastle this year, I realised that if I was going to ask everyone else that question, perhaps I ought to have an answer myself. I did.
I’m going to walk the Cleveland Way.
Suddenly it wasn’t just one of those things I fancied doing someday. I’d made a commitment. I’d said it out loud….. Bugger!
But why make it about FSHD?
There’s something about FSHD that continues to frustrate me. Hardly anybody has heard of it.
Thousands of people in the UK are thought to be affected by FSHD, and yet mention those four letters to most people and you’ll probably be met with a blank expression. There are other neurological and neuromuscular conditions with far greater public recognition. MND is an obvious example.
MND is a horrible condition and absolutely deserves the attention and support it receives. Extraordinary advocates — including people from the world of sport — have helped bring it into the public consciousness.
People have heard of it. They recognise the initials. They know that research matters. FSHD doesn’t yet have anything like that level of visibility. And I want to play a small part in changing that.
I think the next few years matter
There is some genuinely exciting research happening in FSHD. For the first time, there are potential treatments being developed which target the underlying mechanisms of the condition.
I don’t know which of those treatments will ultimately work. I don’t know when they might become available. I certainly don’t know what access to them might eventually look like in the UK. But I’m hopeful.
If effective treatments do emerge, people living with FSHD will need a strong voice in the conversations that follow — including conversations about approval, value, funding and access.
Patient organisations and patient advocates have an important part to play in those processes, helping decision-makers understand what living with FSHD actually means and what a meaningful treatment could change.
That means our community needs to be visible, organised and heard.
We need people to know that FSHD exists. We need patients telling their stories. So if walking the Cleveland Way gets a few more people asking:
“What’s FSHD?”
then that’s a pretty good reason to keep putting one foot in front of the other.
There’s another reason
This one is probably more personal. I’ve met quite a few people living with FSHD now. Some have relatively mild symptoms. Others are much more severely affected.
I’ve seen people walking independently, people using sticks and walking aids, and people using wheelchairs. FSHD is incredibly variable.
So the last thing I want somebody to take from my Cleveland Way challenge is:
“Gary can walk more than 100 miles, therefore somebody else with FSHD should be able to do it too.”
Absolutely not. This is my challenge. I’ve designed it around what my body can currently do.
I’m breaking the route into manageable sections. I rest between them. Richard walks with me. Hayley helps enormously with the logistics. Friends can join us along the way.
I’m not walking the Cleveland Way in spite of FSHD. I’m finding a way to walk it with FSHD. There’s a difference.
I want you to surprise yourself
Perhaps this is the most important reason I’m doing it. I’d love everybody living with FSHD to find something that surprises them.
I don’t mean walking the Cleveland Way. If you regularly swim 500 metres, perhaps one day you might decide to see whether you can swim 1,000. If three stairs is normally your limit, perhaps your challenge is to see whether you can make it six.
And it doesn’t even have to be physical. Your challenge belongs to you. The distance doesn’t matter.
Nobody else gets to decide whether it’s sufficiently impressive. You do.
The real challenge isn’t about comparing what you can do with what somebody else can do. It’s about occasionally questioning the limits you’ve started placing on yourself.
That’s exactly how this began for me. I thought: I couldn’t do anything like the Yorkshire Three Peaks now. Then I asked: Why not?
The answer wasn’t to go back and try to become the person I was twenty years ago. That person has gone. My body has changed. My life has changed. The answer was to find a challenge for the person I am now. For me, that’s the Cleveland Way.
What if I don’t finish it?
I haven’t actually completed the Cleveland Way yet. There are some fairly substantial hills and quite a lot of miles still standing between me and the finish. FSHD may have something to say about that.
So might the North Yorkshire weather. Perhaps Richard will eventually realise what he’s signed up for and stop answering my messages.
I’ve realised something. I don’t need to reach the end for this to have been worthwhile. I’ve already walked distances that, not very long ago, I wasn’t sure I’d be able to walk again.
I’ve got outside. I’ve challenged myself. I’ve walked with friends. I’ve met new people., I’ve talked to people about FSHD who’d never previously heard of it. And I’ve surprised myself.
Of course I want to finish. I fully intend to finish. Reaching the end isn’t really the point anymore. The point is that I started.
So if you’re living with FSHD — whatever that looks like for you — I’m not asking you to walk the Cleveland Way. I’m asking you something much simpler.
What could you do that would surprise you?
#fshd #10metres
A note from me
I’m writing this as someone living with FSHD, rather than as a medical professional.
My experience of FSHD is my own. The condition varies enormously between individuals, so the things I’m physically able to do aren’t a measure of what somebody else with FSHD should be able to do.
Your challenge should be yours.