Hooked up to a ventilator and unable to move, super-fit Sam Perkins thought his sporting career was over.
But that was before 15 of his loyal friends and family helped push him over a triathlon finish line in a wheelchair, showing that Sam had one more big event left in him.
He had been diagnosed with Motor Neurone Disease aged 37 and told he was unlikely to see his 40th birthday.
But three years later, not only has he defied that forecast but he has also completed his final race – billing it as his “One More Tri”.
In the 10 years before his diagnosis, Sam had taken on up to 40 triathlons as well as scores of marathons and half-marathons.
He told the Sunday People : “I couldn’t just give up, I wanted to carry on racing for as long as I humanly could – raising money and awareness of MND to hopefully save others’ lives after I’d gone.”
And he describes the race’s euphoric finish as “a dream come true”.
Because of the ventilator that now keeps him breathing, it had been deemed unsafe for Sam to tackle the swim and cycle sections of this month’s Nottingham Outlaw Triathlon.
But he was thrilled to finish the 13.1-mile run section with the help of Team SAM, named after his Stand Against MND charity. His achievement helped raise nearly £12,000 to help improve the lives of others with the disease.
Sam, of Nottingham, was given his diagnosis in 2019 after suffering prolonged shortness of breath and muscle tremors.It was worried wife Emma, 39, who eventually had to “drag him” for a check-up.
He had realised something was wrong the previous November when he was watching his beloved Nottingham Forest FC with dad Alan, 70, and could not muster the breath to cheer a last-minute equaliser.
Diagnosed with pneumonia, he was sent to Queen’s Medical Centre in Nottingham – where he collapsed and was rushed to intensive care. That was when he was given the crushing news that he had MND.
Sam said: “I asked what the treatment options were. The consultant paused, then explained there was no treatment – the disease was terminal.
“It was a matter of looking after me as my body slowly stopped functioning.”
MND is a degenerative neurological condition which affects motor neurones – nerve cells in the brain and spinal cord that control our ability to walk, talk, move and breathe.
It affects around 5,000 people in the UK at any one time and half die within two years of it taking hold. Sam and Emma had got married just four yearsearlier and were making plans to start a family.
To help them deal with the diagnosis, they came up with a plan to try to help find a cure, so others in the future would have a better chance.
Sam said: “I suddenly thought of all those things I’d planned to do with Emma, my gorgeous wife who I loved more than ever – it was like having a door slammed in my face.
“Our charity has raised approaching £100,000 to find a cure, as well as funds for Nottinghamshire Hospice, which has supported us through thick and thin. I just feel so fortunate to have had the life I’ve had, to have known Emma and to create this legacy.”
Sam got into triathlons at 28, realising that, as a smoker and over 18 stone, he was “slowly killing himself”.
He said: “I saw an advert for a local triathlon, signed up and started training. It was extremely hard because I was so overweight and out of shape.
“But every day I pulled on my trainers, got in the saddle or slipped into the pool, knowing I had to do something.
“I was never going to be the fastest, but this was a challenge I had to do – if not for my sake, then for Emma.”
Within a year he had lost six stone and signed up for countless endurance events. He said: “It felt like I’d been reborn. Every day was amazing.”
He and Emma, a solicitor, have known each other for more than 30 years – living on the same street and going to the same primary school, then both going on to university in Sheffield.
They finally became an item 12 years ago after bumping into each other at a pub near their childhood homes.
Emma said of Sam’s diagnosis: “After all the tests and months of strange symptoms, we had a pretty good idea of what it
could be. We were heartbroken when it was confirmed.”
Sam’s decline since has been rapid. He quickly started needing 24/7 care, a ventilator to sleep and became unable to feed or bathe himself.
He said: “I’ve digitally banked my voice so that when I need to talk using a computer I’ll sound like me, not Stephen Hawking.”
He has still been working one day a week as a business consultant, as well as building the charity – which runs group fundraisers and even has a charity beer, calendar and children’s books. Emma says crossing the finish line with Sam on his last triathlon was “a mix of emotions – from exhilarating to great sadness that I’d never see him cross that line again”.
Sam added: “I was a fit and healthy guy in his 30s, proof that MND can strike anyone. It can come in many forms – in my case it took my ability to breathe independently, then started to weaken my limbs and coordination.
“But I refuse to feel sorry for myself. I have to find something positive in it.
“I’ve made it past my 40th birthday and hopefully started something very exciting for others to continue. I really couldn’t ask for more.”
- You can sponsor Sam at justgiving.com/onemoretri and find out more about MND here mndassociation.org
