‘One Last Tri’ – Motor Neurone Disease will not deny Sam Perkins

Sam's reaction to his diagnosis has been inspirational and he's raised over £70,000 to fund research

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Sam Perkins will attempt to cross the finish line one more time at the Outlaw Half Triathlon in Nottingham on May 15.

The 40-year-old, a keen triathlete, was diagnosed with Motor Neurone Disease (MND) in 2019 and is restricted to a wheelchair and relies on a ventilator to breathe.

Sam’s friends and family however are determined to help him in his goal of completing ‘One Last Tri’. He will join 2,200 other triathletes preparing to take on the Holme Pierrepont course on the outskirts of Nottingham City Centre.


One Last Tri

The Nottingham Forest fan was eager to complete the course in 2020, but the event was cancelled due to the coronavirus pandemic.

The plan was for him to be towed by boat through the 1.2 mile swim before being pushed along the 56 mile bike course, and 13.1 mile run course.

Unfortunately, the two year delay means that Sam’s condition has progressed to the point that it would be unsafe for him to complete the entire course.

Sam Perkins and wife Emma
Sam and Emma set up Stand Against Motor Neurone Disease (SAM) to help raise money to find a cure for the heartbreaking disease

Instead, Sam will complete a five-lap course around the National Watersports Centre’s Rowing Lake on an adapted wheelchair, supported by his step-brother Tom, carer Alex and three support runners each lap who will share pushing duties.

The chair is being customised to support Sam’s 6ft 2in frame, with considerations including making sure he is comfortable, the battery-powered ventilator is secure, and the chair is ergonomically adapted for the pusher.

Sam explained: “There are different themes to each lap. The first one features people whom I inspired to give triathlon a go, including Glenn, my brother-in-law, Richard, one of the best men at my wedding, and Greg, a trustee of the charity.

“I’ve managed to convince a couple of ex Nottingham Forest players to run the second lap along with the commercial manager of the club who is also vice chair of the local Motor Neurone Disease Association, and a big local campaigner.

“The third lap will be some more serious triathletes, including Matt, who lost his dad to MND and offered to complete the whole event for me.

“The fourth lap are more great supporters including Anna my occupational therapist, Professor Steve Haake who has helped in trying to get the chair adapted and Dave, who has completed every Outlaw event there has ever been. Then Emma and my two sisters, Victoria and Rebecca will run the final lap.”

Team SAM

Steph Cobb, who has competed for a number of years with Sam, will complete the 1.2mile swim for Team SAM, while Sam’s step-father, Nick Rawling – who Sam introduced to the sport over a pint in 2009 – will be tasked with completing the bike leg.

“Steph was about 13 when I first started running with the tri club,” explained Sam. “As she got older, I got fitter, so we progressed about the same rate.

“She’s probably the most determined person I’ve ever come across in triathlon. She was a last-minute replacement for a charity tri that included a five mile swim in Lake Windermere, then cycling to Nottingham to run the marathon. Steph’s a girl who doesn’t know how to give up.”

Sam adds: “Nick’s been an incredibly positive influence all the way through my triathlon journey, and at 67 he still has a six-pack!”

The attempt will also raise vital funds for Stand Against Motor Neurone Disease, the charity set up by Sam and his wife Emma shortly after he was diagnosed. The funds will be used for research to eventually find a cure for the disease.

‘I fell in love with the sport’

In his 20s, Sam weighed 18 stone and was a smoker – all that changed after he stepped through the doors of the East Leake Triathlon Club in his native Leicestershire:

“The first day I walked into the tri club in East Leake, I realised how supportive an environment it was.

“Looking back, it was a big moment for mum and dad too, to see their son pursue something related to fitness and follow it through.

“I just wanted to do it again and again, and by the end of the first year I’d completed seven or eight sprint triathlons and lost about 5 ½stone.”

Sam would go on to complete more than 40 triathlons including such epic feats as Ironman UK in Bolton in 2014 and the Outlaw Triathlon in Nottingham in 2016, both made up of a 2.4mile swim, 112mile bike ride and 26.2mile run.

The focus now is on the Outlaw Half on May 15 and he adds: “This event is my ambition to take part just one more time.

“To be on the course and encourage others as they run past, to see my old tri club running the feed station at the top of the lake. Just to be in that environment.

“I am almost certain I will cry, and for a myriad of reasons: to do something that I thought had been unexpectedly taken away from me again, something that had given me so much self-worth, and something that I always look back on as one of my biggest achievements. It’s going to be a big day.”

Sam with his wife Emma

‘Whatever you need, we’ll make happen’

In 2019, Sam began to suffer from breathing issues over a five month period, and eventually caught a nasty bout of pneumonia.

He was instantly put on a ventilator to help him breathe, but within months he’d lost the ability to walk, and was struggling to use his hands – he was diagnosed with an aggressive form of MND.

“My friends were saying: ‘What is that? What does it mean?’

“I don’t think I fully comprehended the enormity of the diagnosis and how few options there were… well, no options really. The disease will do what it’s going to do, and I’ll just have to cope.

“I remember sitting by my hospital bed a couple of days after diagnosis feeling pretty crappy about life. I was seeing all these problems.

“Then Emma said: ‘If things need to change, we’ll just do it. Whatever you need, we’ll make happen.’

“That was the moment I thought: ‘This thing doesn’t need to stop me.’ I tapped back into that triathlon mentality where you have the ability to push yourself and realise the biggest limit is inside your head.

“It just switched that day. I thought: ‘Whatever I want to do, I’m going to try and do it. And if I can’t, at least I’ve tried.’”

“So, as soon as I got the opportunity I wanted to be part of a triathlon again.”

Stand Against Motor Neurone Disease

Stand Against Motor Neurone Disease has to date raised £75,000 to tackle this heart-breaking condition.

Sam says: “When I heard the figure being put into research and development I thought it was pitiful. It’s thought of as being this rare disease, but to put it bluntly, that’s only because people die so quickly.

“We started our own charity because we wanted the money from people who donated in my name to go to research. We were lucky enough to visit a lab in Nottingham last week and meet a PhD student doing research with funds that we’ve raised.”

Sam is raising money for Stand Against MND (or SAM for short). You can find out more about the charity and donate to this challenge at

Stuart Dick
Written by
Stuart Dick
Stuart is a graduate of the University of Sunderland with a masters' degree in Sports Journalism. He spends a lot of his time running and cycling around West Yorkshire, England.
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