Reporter Matt Price spoke to Craig Eskrett and his friend Liam Foster about Liam's 600km cycling challenge.
A father-of-two and rugby coach has spoken of how an innocuous muscle twitch led to the devastating diagnosis that he could lose his life within five years.
Craig Eskrett, 36, from Hull, found out in September last year that he had the debilitating condition motor neurone disease (MND).
It came a year after he first started to experience symptoms.
"I noticed my thighs were twitching and at the time I thought it was just muscle fatigue because I do a lot of sport and exercise," he said.
"So I thought I'd change my training regime.
"But when it came to the back end of that year I started to have cramps during the night, I couldn't put my finger on why. At this point I was still able to function well.
"[Then] I started to lose a lot of balance when I was running. I played one of the games and felt like I couldn't kick any more. There was no strength."
Visits to a GP and physiotherapist followed, but after a referral to a neurologist Mr Eskrett was sent a letter confirming his diagnosis. He was told he could have two to five years
"It was hard because my partner was opposite me," he said. "She broke down, which to me was probably the hardest part.
"I don't think it sank in until I started ringing my family and ringing my friends."
MND affects the nerves in the brain and spinal cord which send messages to muscles to allow movement.
It causes loss of movement, weakness and muscle wastage and affects around 5,000 people in the UK. There is currently no cure.
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Mr Eskrett's fiend, Liam Foster, 33, has cycled 600km - the distance from Hull KR's stadium, Craven Park, to Wembley and back – in his honour to raise money for the MND Association.
He said he was inspired by the extraordinary fundraising efforts by former Leeds Rhinos stars Rob Burrow and Kevin Sinfield following Burrow's MND diagnosis in December 2019.
He told ITV News: "There are so many reasons why it needs more backing behind it really. Until it gets into a place where people do get the diagnosis. That we're in a place that we can support it much better."
Mr Eskrett says he is determined to defy his prognosis, saying it is "at the back of my mind [but] the thing that keeps driving me and keeps me fighting this every day".
"Since I've been diagnosed I've put weight on I feel like I'm getting stronger. A switch has gone on and I've got that motivation to beat it and it's amazing the amount of support I've received from friends and family," he said.
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