Journalist Tim Heming spoke to Sam at HUUB HQ before lockdown to learn more about how the East Leake triathlete is living with motor neuron disease. Much of what’s discussed in the interview has since been affected by social distancing, self-isolating measures and event cancellations, providing wider perspective on the importance of alleviating this cruel pandemic.
“One last triathlon. To be part of that community feel. To cross the finish line one more time. It’s just something I really want to do.”
In March 2019, Sam Perkins was told he had motor neuron disease, the regressive neurological disorder for which there is currently no cure.
The diagnosis was received after Sam was rushed to hospital with pneumonia. Following months of being unable to breath comfortably, restricting sleep to a fitful hour at a time, his body was unable to fight off infection from inflaming the lungs.
The 37-year-old business consultant from East Leake in Nottinghamshire, was told his diaphragm was failing, a rare first symptom of MND, but for Sam a tell-tale mark of the disease.
It finally made sense of the months of failing health; answered the question as to why he could no longer walk to the upper tier of the City Ground to watch his beloved Nottingham Forest without pausing to catch breath.
“Later that day they stuck me on non-invasive ventilation and it’s life-changing, absolutely life-changing. I could finally sleep.”
Sam's diagnosis is ‘rapid, aggressive’ but the prognosis is uncertain. “The weird thing about MND is that they don’t really know,” Sam explains. “Fifty per cent die within two years of diagnosis, but some live for 20-30 years. People think of Stephen Hawking and say: ‘Oh, right, you’ll be in a chair for a while.’ No, I’ll probably be dead pretty soon.”
But he is anything but defeatist. However much time he has left, Sam is determined to make the most of it. The thinking is clear; there is clarity of purpose.
“A couple of months after the diagnosis I thought: ‘What do I actually want to do?’” Sam explains. “An awful lot of people were getting in touch asking: ‘What can we do?’ We decided to start our own charity. It’s been an amazing thing to do.”
The charity, Stand Against MND, or SAM, was launched in December and raised almost £14,000 within two months. Sam and his family have been humbled by the support and are planning a series of events to raise money to further MND research and fund care through vital hospice provision for those affected.
If motor neuron disease has altered the direction of Sam’s life – “a crappy roll of the dice” – then triathlon got there first.
“It would be fair to say that this is cheesy as hell, but triathlon changed my life,” Sam says. “When I was 28, I was a fan of drinking, chip shops, weighed 18 ½ stone and was frequently sweaty – a big fat lad who enjoyed socialising too much.
“I had a conversation with my step-dad in the pub over Christmas about becoming a bit fitter, and we started talking about triathlon. Back then it was late 2000s and tri was just gathering momentum.
“I remember thinking: ‘That sounds about the most ridiculous sport I’ve ever heard of.’ There’s a club called 4Life tri in East Leake, a village between Nottingham and Loughborough, and I said: ‘I cannot go, look at the size of me.’ But as we know with triathlon, it doesn’t matter. I was welcomed with open arms.
“The wonderful thing about this sport is that it’s not what you can do, but that you’re willing to do it. Everybody gets cheered on. Everybody is part of the atmosphere, and it’s not about winning but beating your personal goals and demons. So, I did my first one, a sprint tri, and finished third to last.”
But the touch paper was lit and over the nine years that followed Sam progressed to finish 40 events, building up from sprint to Olympic distance, to half-Ironman and then Ironman UK in 2014, soldiering through in Bolton after slashing his foot during the swim. “It’s two Iaps and they tell you to lower yourself off the pontoon for the second lap. I didn’t listen, jumped in, smashed my foot into a rock and gouged a two-inch cut into my sole.”
A St John Ambulance volunteer patched Sam up in the transition tent and helped him into his bike shoes. “It would have been easy to DNF,” Sam says. “But while it was sore, I could run. Sort of. I’ve never been able to run fast anyway.”
Another full distance event would be ticked off at the Outlaw in Nottingham two years later. “That feeling of battling on, pushing yourself as far as you can go, makes you realise what you are capable of – and it’s more than you thought before you tried,” Sam says. “I’d think: ‘I cannot do it,’ then realise I have enough determination. I credit that knowledge for how I’ve reacted to my diagnosis. I am going to make the most of it, get out there and do as much as I can.”
MND affects one in 300 of the population directly and only 2% of those diagnosed start with respiratory problems. It means that Sam is reliant on a ventilator to allow a quality of life as MND’s pernicious grip takes hold and the rest of his system shuts down. While he can still just about support his weight with a frame, he now needs orthotics to prevent foot-drop and most of his waking time is spent in a wheelchair.
“I can still move just about everything, just to lesser degrees,” Sam explains. “My hands and fingers are really limited and I cannot really raise my arms above my head – they are probably my weakest bit. Legs, I can still hold my own weight, but I cannot do straight leg raises.
“Yet strangely, from the neck upwards to date, I’m absolutely normal. A lot of those with MND suffer speech and swallow problems as an early symptom, but at least it has left my voice unchanged, so I’m going to use it as much as I can.”
And that isn’t, excuse the pun, just Sam paying lip service. He is currently undertaking a laborious process known as ‘voice banking’ where he diligently records thousands of basic phrases without inflexion so that if his vocal cords cease to function, rather than a mechanical timbre so familiar with Stephen Hawking, he will be able to switch to a voice synthesiser that will project his natural voice.
While the prognosis seems to present a cruel finality, Sam and Co are in no mood to acquiesce. They come together as a support network that is proving as life-giving as the ventilator that deputises for his lungs.
“My wife Emma, family and friends have been enormous in this,” Sam says. “I was talking to one of my health care professionals yesterday and she said those who best cope with this disease are those who have the best support networks – and the NHS cannot do that.
“There is so much stuff I cannot do for myself any more, but I don’t feel like I’m burdening the same person with it all the time. If it were just me and my wife, the load on Emma would be overwhelming, but because we spread it out over the week, I don’t mind asking for a sip of drink, or if she’ll scratch my ear…”
Sam’s carer for today is his father Alan, who views support as a two-way process: “Sam has helped all of his family and friends to deal with this,” he says. “It feels the wrong way around. It’s simply mind-boggling.” Together, they still make their fortnightly trips to Forest’s home games, a bonding process that dates back more than a decade, when Alan first bought a City season ticket so he could spend time with his son who was working away at the time. “I was always a fan. Dad’s a more recent convert,” Sam adds.
The same support network is also committed to helping organise the various events planned to raise funds for Stand Against MND. The activities [pushed back 12 months now due to Covid-19] include galvanising more than 10 novices to take part in the East Leake triathlon. “It was the first tri I ever did, and I want to encourage others to get into the sport,” Sam says. There will also be SAMFest – “all the things I like in a day, in a field, in East Leake, although I’m struggling with how to incorporate triathlon into that” – and then the epic challenge of the Outlaw Half Holkham in June.
“First and foremost, it is to raise money for the charity. Secondly, it’s for me to go around a tri course and cross the finish line one more time. I’ve seen the videos of Team Hoyt and thought: ‘I can do that. Well, more to the point, somebody behind me can do it and I can sit there,’” he adds with a laugh. “The biggest challenge at present is getting hold of the equipment.”
Sam has selected the event at Holkham as unfinished business after signing up for it in 2018, but feeling able to train, the reason, which he now understands, being as a result of early MND symptoms.
The team of “towers, pedallers and pushers” are being recruited, comprising those who have raced with and supported Sam through his own triathlon adventures – “There have been people who said I inspired them to get into tri, those who first did Ironman because I had, those I trained, and trained with, and others who have inspired me.”
The 56mile bike ride is envisaged with an adapted tricycle and the nominated cyclists rotating after eight-mile stints – “Although I’ve lost a lot of muscle, I still weigh about 12 stone, that’s a lot to shift on a bike for 56miles.”
The final 13.1mile run leg will need an adapted chair that can be pushed with as little rolling resistance as possible – “Uphill will be hard, downhill will be alright” – and while Sam speaks with infectious enthusiasm about the plans, Alan adds a note of caution. “I’m nervous. His family are nervous. It’s a long day.”
“It will take it out of me,” Sam accepts. “My muscles are not easy to move anyway and when I’m tired, it’s harder. One of the things is the early morning, I’m not great at those any more. It’s about a one-hour process to get me out of bed. I might have to be a bit less leisurely over breakfast.”
Yet if it all goes to plan, what will the emotions be on crossing the finish line? “There are certain things I can cope with not being able to do any more, but one of the things that pisses me off is that I cannot go out on my bike; I cannot do this sport. I kind of deal with it, but to be able to be involved with it again, just one more time, I think I’ll be surprised at how emotional I’ll get… and I’ll be amazed if I don’t cry.” He won’t be alone in that.
Tim has donated his fee for this piece to Stand Against MND.