Sam Perkins from East Leake in Leicestershire was diagnosed with an aggressive form of MND in 2019. Despite being on a ventilator and in a wheelchair, the 40-year-old Nottingham Forest fan and keen triathlete will attempt to cross the finish line of a race one more time at the Outlaw Half Triathlon in Nottingham on May 15.
With the help of friends and family, Sam is determined to join around 2,200 competitors to complete the tough but popular challenge at Holme Pierrepont, around five miles from the city centre.
Sam’s original aim was to tackle the event in the summer of 2020. The plan was to be towed in a boat through the 1.2-mile swim, and pushed through the 56-mile bike leg and 13.1-mile run.
As the pandemic forced a delay, Sam’s condition progressed and for safety reasons, the revised attempt will be reduced to the run element on a five-lap course around the rowing lake at the National Watersports Centre.
Sam's chair is being customised to support his 6ft 2in frame, with considerations including making sure Sam is comfortable, the battery-powered ventilator is secure, and the chair is ergonomically adapted for the pusher.
Racing for better R&D into MND
Funds are also being raised for Stand Against Motor Neurone Disease (SAM), the charity Sam started with wife Emma shortly after receiving his MND diagnosis. The charity funds research into eventually finding a cure for the disease and has raised more than £75,000 to date.
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.”
Meet 'Team Sam'
As a collective effort, Team SAM will have plenty of support throughout the day. Friend Steph Cobb will first take on the 1.2-mile swim.
Sam adds: “Steph was about 13 when I first started running with the tri club. 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 5mile 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’s step-father, Nick Rawling, who introduced him to triathlon over a pint at Christmas Eve in 2009 will tackle the 56-mile bike course on the same roads Sam used to train on when he could cycle.
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!”
Finally, the run will see Sam accompanied by step-brother Tom, who will help with a ventilator change if required, and carer Alex, who will cycle alongside with emergency equipment in a backpack. Three support runners on each lap will share pushing duties.
Sam explains: “There are different themes. The first lap are 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-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.”
Sam's journey into triathlon
Sam’s first triathlon was in 2010 in East Leake, the village where he was brought up and met his wife Emma. He's since returned to the village after being given the MND verdict.
The swim during this first triathlon was at the local leisure centre, Sam remembering how he wore the shirt of his beloved Nottingham Forest to wind up the triathlon club chairman who was a Leicester City fan.
Sam says: “I’m not your lifelong athlete who got into tri because I was constantly active. In my 20s I was more interested in going to the pub. I was a smoker, weighed about 18 stone and wasn’t particularly fit. But it was the sense of achievement when I crossed that finish line.
“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 gruelling 2.4-mile swim, 112-mile bike ride and 26.2-mile run.
The diagnosis for MND came after suffering sustained breathing issues for five months, which eventually led to pneumonia. He was immediately placed on a ventilator and within months had lost the ability to walk and was struggling to use his hands.
He explains: “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. So, as soon as I got the opportunity I wanted to be part of a triathlon again.”
I tapped back into that triathlon mentality where you have the ability to push yourself and realise the biggest limit's inside your head. Whatever I want to do, I’m going to try and do it. And if I can’t, at least I’ve tried
Having had initial plans thwarted by the onset of Covid-19 – mass participation events were cancelled and as someone with a part-respiratory condition, Sam was classified as vulnerable – how has he found the will to continue with the challenge?
“I’d credit Emma for that," says Sam. "I remember sitting by my hospital bed a couple of days after diagnosis feeling pretty crappy about life. I was seeing all these problems, and she just 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's 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.’”
Collective spirit
While triathlon is often seen as a solo pursuit, the essence of Team SAM is to show a collective spirit, and that there are times when it’s right to reach out for help.
“The first day I walked into the tri club in East Leake," recalls Sam, "I realised how supportive an environment it was. It’s one of the reasons I fell in love with this sport. 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.”
Be sure to check out the July issue of 220Triathlon to read all about how Sam got on (out 14 June).
Sam is raising money for Stand Against MND (or SAM for short). You can find out more about the charity and donate to the challenge at www.justgiving.com/fundraising/onemoretri
Sam and the team welcome as much support as possible on the day.
If you’d like to interview Sam or find out more about the event, call Tim on 07554415513, or email tim.k.heming@gmail.com
