A North Yorkshire walker is tackling 109 miles of moorland and coastline to raise awareness of a condition that changed his family’s life.
For Thirsk walker Gary Holmes, the Cleveland Way is more than a route from Helmsley across the North York Moors and along the coast to Filey.
It is a test of endurance, a tribute to his father and a chance to make more people understand the condition that has shaped his life for decades.
His biggest challenge is completing the route while living with facioscapulohumeral muscular dystrophy, known as FSHD.
“I wanted to challenge myself,” he said.
Gary Holmes (Image: SUBMIT)
“I guess to a certain degree, there was a feeling of, if I'm going to do it, I’d better get on with it. Because next year, it's going to be even harder.”
Mr Holmes was in his 40s when he learned that the weakness and fatigue he had suffered for years had a name.
His father had lived with FSHD, but Mr Holmes never linked his own symptoms to the condition.
I didn't know I had it until I was in my 40s,” he said.
As a child, Gary watched his father struggle with muscle weakness and miss out on things other fathers did with their sons. But his father found other ways to teach him.
Gary and some of his friends Richard (Ted) Parkinson, Bev De Friend and Tina Lynas and the pictures are taken on the way from Osmotherley to Lord Stones (Image: SUBMIT)
“He always stood behind me, telling me what to do with a drill or a screwdriver,” Mr Holmes said.
“I learned loads as a young guy, about all sorts of things.”
His father first developed symptoms at 28.
His condition worsened, causing shoulder-blade winging, difficulty walking and foot drop.
He eventually needed a wheelchair and lost some use of his hands.
His father died in 2011. Around 2016, Mr Holmes began noticing symptoms himself.
He had suffered shoulder and hip problems since his early 20s but never linked them to FSHD.
Gary and some of his friends Gary and some of his friends Richard (Ted) Parkinson, Bev De Friend and Tina Lynas and the pictures are taken on the way from Osmotherley to Lord Stones (Image: SUBMIT)
Gary recalls talking to a friend after a run, wondering whether he was simply getting older. “I said to him, ‘Are we just getting old? Or do you get the same thing? When you exercise, does it take you days to get over it?’
“He sort of said, ‘A little bit, but not as you describe.’ And that kind of made me think, why?
“There was a sense of relief that I knew,” he said. “There's a reason I'm tired.”
“I guess what took over for me was a sense of utter panic. What was going to happen?”
FSHD is a genetic condition that causes progressive muscle weakness.
Its name refers to the areas it commonly affects: the face, shoulder blades and upper arms. It can also affect muscles in the torso and legs.
Symptoms include winged shoulder blades, difficulty lifting the arms, weak hands and fingers, foot drop, fatigue and pain.
“The biggest problem is not knowing,” Gary said.
“Not knowing that you have it, not knowing how it's going to progress, and not knowing how it's going to affect you in your future.”
Gary is walking 109 miles along the Cleveland Way (Image: SUBMIT)
Gary refuses to let FSHD dictate his life.
“I don't do anything differently,” he said. “Apart from knowing my limitations.”
Running, once a favourite pastime, is now too difficult. “I don't do that now,” he said. “But before FSHD, I ran a lot.”
Mr Holmes does not expect everyone with a muscle-wasting condition to attempt a 109-mile trail.
The FSHD Society estimates that the condition affects roughly one in 8,000 people worldwide, although the true figure may be higher because some cases go undiagnosed.
Research into potential treatments is also continuing.
UK clinical trials include a study testing drugs aimed at FSHD’s underlying causes.
The Cleveland Way challenge has helped Gary reconnect with old friends and make new ones.
Friends and community members have joined him for sections of the route, while others have followed his progress and sent messages of support.
A university friend he had not seen since his early 20s contacted him to join part of the walk on the east coast.
Gary admits he has been surprised by the response. “I don't quite understand the motivation, if I'm honest,” he said.
“But it's lovely, it is really nice to see that people want to do it with me.”
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After 55 years, Gary says, the walk has given him an unexpected reason to reconnect with old friends.
Mr Holmes stresses that FSHD affects everyone differently and knows he is fortunate to take on a challenge of this scale.
But he hopes the walk will make a condition largely unknown to the public harder to ignore.
“My motivation is selfishly about me,” he said. “But there's potentially a lot of good that can come with that.”
“The good that I want to come from it is for more people to understand that this thing exists.”