Ex-sportsman with MND says body feels “under siege”, as Derbyshire dad supports him with huge feat

Sam Perkins, a former triathlete who in 2019 was diagnosed with MND aged just 37, spoke out about the realities of living with the brutal disease as Derbyshire dad of two Paul Robinson takes on one of the world’s toughest sporting challenges to raise money for his charity’s vital research.

Paul is taking on the fiendish Enduroman Arch to Arc Triathlon, which involves running from London to Dover; swimming the English Channel, and cycling from Calais to Paris.

He’s doing it in aid of Sam Perkins’ Stand Against MND charity which has so far raised more than £250,000.

Sam, who back in his sporting days was a keen triathlete and outdoors enthusiast, now lives day to day with the assistance of carers.

He said: “Living with MND is a relentless and frightening experience. It feels like your body has been put under siege.

“It’s likely that you will have lost some of your physical abilities by the time you are diagnosed, a process which frequently takes years, so the first thing to come to terms with is that the abilities you have lost will never return.

“Next you will typically be told two things. Fifty percent of people die within two years of the day they are diagnosed, and we have no way of knowing how or how quickly your particular case will progress.

“What is known is that the disease will likely take away your ability to move, eat, drink, talk and ultimately breathe. MND is fatal in 100% of cases.

“It takes a while to recover from the initial shock but then for me I found I was left with a choice: did I want to spend the time I had left being bitter and angry at the world, or to try and find as much joy as possible in the time that remains? For me there was only one option.”

Since being diagnosed Sam and his wife have put their energies into forming the Stand Against MND charity which has committed to giving 75 per cent of money raised to research.

Working with the Motor Neurone Disease Association (MNDA) the charity is funding PHD students across the UK who are researching MND. The charity has also established a partnership with themselves, the MNDA and the University of Nottingham, with the aim of creating a centre of excellence at the university. It aims to co-ordinate other important MND research projects too.

Sam’s charity has challenged 50 fundraisers to raise £500 each for Stand Against MND and Paul said he was so impressed with the cause he has taken on the Arch to Arc as his contribution.

As well as his full-time job working for science company Lubrizol – a company which has contributed to his charity fund - Paul has devoted nearly a year of training for up to 30 hours a week for the Arch to Arc, including being put through his paces at Loughborough University, swimming in Spring Lakes at Long Eaton, long swims and runs up in the Lake District, eating 6,000 calories a day, all backed up by a long history of extreme sporting events.

The triathlon itself is seeing him supported by a team who’ll be in a boat crossing the English Channel, feeding him bananas and flapjacks via a fishing reel to keep his energy levels up.

But Paul said it was all worth it to raise funds for a worthy cause.

“Sam’s still got such a sense of fun about life,” he said. “The fact that he’s been dealt such bad cards, but he’s still having fun in life and he’s wanting to make a difference to MND, that’s what I find inspirational.”

Sam has paid tribute to Paul’s incredible efforts, saying he is, “one of the world’s extraordinary people”.

He said he himself had accepted the realities of MND and was determined to raise as much possible to help scientific minds “solve the MND puzzle” by finding treatment and a cure.

“I have found it easiest to accept what MND will do to my body from the earliest moment possible and adapt as necessary when the time comes,” he said.

“Many people choose to fight and stave off the change by any means, but that isn’t for me. When the changes come and practicalities become difficult, frustrating and ultimately impossible - the emotions become familiar; first sadness, annoyance, anger and ultimately acceptance. I have found that my approach of preparing for the change as far in advance as possible helps to make that transition as painless as possible.

“The longer you live with MND the more difficult and impractical day to day life becomes. I now find myself in a situation where the majority of my waking hours are spent dealing with MND related issues. Washing, toileting, dressing etc take a really long time so if you see me out and about you know I definitely want to be there!

“MND will never stop me doing things that are important to me no matter what it throws at me. Life is too special a thing and there is too much to do to let that happen. Yes, I have days when I’m in tears because of how tough life is, or where I yearn for what life was or could have been. But then I remember I’m just angry at MND, not at life.

“Anyway enough of that, I’ve got stuff to do.”

To support Paul Robinson’s incredible triathlon challenge, you can donate here: www.justgiving.com/page/paul-robinson