A triathlete with Motor Neurone Disease who comes to Day Therapy at Nottinghamshire Hospice is planning to complete one last triathlon as part of a heroic fundraising effort for Nottinghamshire Hospice and Motor Neurone research.

Prior to his diagnosis last March, Sam Perkins, 38, competed in 40 triathlon events including two Iron Man challenges. He now uses an electric wheelchair and will need a specially adapted bike, adaptations to his wheelchair so he can be pushed around the running route and a boat to tow him across the water in the half iron man event in June.

After setting up a crowd-funder before Christmas which raised more than £7,000 in just two weeks and is now up to more than £13,000, Sam, with his wife Emma, have set up a registered charity, Stand Against MND (SAM), to raise funds for Nottinghamshire Hospice and the MND Association.

Sam competing in the water

Sam said: “I knew what MND was before I was diagnosed and knew it was a possibility. The diagnosis was devastating but I very quickly made a decision that I didn’t want to spend however long I’d got being miserable.

“Setting up the charity is a way of focusing my mind on activities  I enjoy at the same time as raising funds for vital research into MND and for the hospice.

“I’ve tapped into my inner determination and I’m looking forward with the support of my loved ones to raising funds that will pay for research into a cure and for hospice care for those affected by MND.”

Sam comes to the hospice for massage therapy to ease his symptoms and for counselling to help him come to terms with his illness. He says the counselling has helped him maintain a positive outlook.

Sam says “The support we’ve received from staff and volunteers at Nottinghamshire Hospice has been phenomenal. Without it we wouldn’t be able to continue enjoying life as much as we do.

“When you’re in your 30s you don’t expect to have to think about hospice care. I knew the hospice was here but had no idea what the care involves.

“To experience what it does is life changing. I come here every week, get a free massage which means my use of my head and neck muscles are actually better than it was nine months ago. But it’s not just the care, it’s the atmosphere, the people and the friendships.

“Before I came here I was apprehensive,  but when you come here you realise there are sick people who are enjoying themselves. What an amazing thing to do to help people who’ve been told there’s no hope to enjoy the life they have left.”

Sam and Emma at a young adults event at the hospice

Alan Perkins, Sam’s father, brings him to the hospice most weeks, stays for lunch and chats to other patients, staff and volunteers while Sam goes in for treatment and counselling. Alan said: “You don’t initially want to go to a hospice but you come here and you think wow this is totally different to what I thought. Plus I get lunch!”

Sam competed in his first triathlon when he was 28, having trained for three months in an effort to lose weight and get fitter.

“Before I started training I weighed 18 and half stone. Three months later I’d lost two and a half stone. I was slow, but when I did the same event six months later I was 20 minutes faster.”

Gemma Taylor-Mahon, fundraising manager at Nottinghamshire Hospice, said: “What Sam is doing is truly inspirational. He’s already raised a phenomenal amount of money in such a short time and has a whole host of activities planned. We’re truly grateful!”