“I do what I can and don’t dwell on what I can’t”: Nick’s story

Nick Apperley, who is living with motor neuron disease (MND), is determined not to let his diagnosis define him or prevent him from doing what he can, whilst continuing to raise funds and awareness for the MND community.

After receiving his diagnosis in 2023, Nick has galvanised an extraordinary commitment to fundraising. Through cycle rides, community events, an amazing black-tie ball and much more, he has now raised over £100,000 for MND charities, including My Name’5 Doddie Foundation, and he inspires everyone around him with a simple philosophy which shapes how he lives with MND:

“I do what I can and don’t dwell on what I can’t.”

Nick describes himself as someone who, even long before his diagnosis, tries not to overcomplicate life.

“I have a cheerful and positive disposition and view life quite simply, without overcomplications” he said. “An outlook which I think helped me in my life before my diagnosis, and I certainly feel is helping me now.”

Now living with MND, that mindset has become all the more important for Nick.

“Clearly, I’ve had a big setback and the initial time after the diagnosis was very difficult, you reflect on what was and what might have been,” he acknowledged, “but I don’t do that anymore - we don’t do that anymore.”

He added: “We try and live positively, and we do lots. I’m quite fortunate at the moment that I’m still in the ‘good’ bit, although I am very wobbly and I can’t walk very far. But I’m still walking, I’m still on my feet - MND doesn’t limit us as much as it may do in the future. So, my outlook on life hasn’t changed, just my ideas of what I can achieve and what I can do has reduced a little bit. This is the new me - a little bit less able every day."

Before his diagnosis, Nick lived an active life. A keen cyclist, he would also run several times a week and had completed over 350 miles of the 630-mile South West Coastal Path with his wife Jill, before MND put a stop to that.

But although MND has changed what Nick can physically achieve, it hasn’t changed his determination to keep as active as possible, or his desire to help others. In fact, fundraising is something Nick has done for years, and prior to receiving his diagnosis, he had already dreamt up taking on a large challenge for charity when he turned 60.

“For many years I’d had an idea that when I got to 60, I would try to do some sort of challenge for charity, probably on my bike,” Nick explained. “So when I received my MND diagnosis, it provided me with the perfect opportunity as to what I should raise the money for, it was a bit of a no-brainer.”

Initially, he feared his cycling days were over, as even trying to ride electric step-through bikes proved difficult: “I couldn’t hold them up, so I thought I was a bit scuppered,” Nick admitted.

But after Jill suggested looking at tricycles, Nick discovered ICE (Inspired Cycle Engineering) trikes, which allowed him to ride again, and it was then time to think up a challenge.

Raised in West Cornwall, Nick decided he wanted to cycle 444 miles from his home in Suffolk, all the way to Sennen, the most westerly village in mainland England - and 'Suffolk to Sennen' seemed to have a good ring to it.

Completed over seven days in June 2024, 'Suffolk to Sennen' brought together 80 different cyclists and dozens of other supporters who joined for sociable evenings at the overnight stops.

“It was fantastic,” Nick recounted. “I managed it okay, I just had to go at my pace, but the whole week was the most amazing experience, very uplifting.”

The challenge raised about £37,000 for us, the MND Association and Challenge MND, and has sparked a series of further fundraising successes, with friends, family and the local community rallying around Nick and Jill to raise as much money as possible.

Organised by a local pub, a summer ball in 2024 raised £10,000, with carol singing and a Christmas fair at another pub raising a further £10,000 over the years. Nick has also held a local evening cycle ride for the past three years to support the Foundation, with this year’s ride raising £3,000.

Another fundraising highlight for Nick is from when he joined Kenny Logan’s Doddie’5 Lions Challenge in Ireland last year, taking part in the final day and cycling from Wicklow to the Aviva Stadium in Dublin before the Lions played Argentina.

“It was terrific. A treat, really,” he said. “And I hope every day Kenny’s going to ring me up and tell me he’s doing something else to see if I can go along!”

Most recently, there was 'Nick’s MND Ball', which was organised by his youngest son Harry, and one of Harry’s cousins, Paul. Held at the Trafalgar Tavern in Greenwich, the evening brought together nearly 200 guests and raised around £43,000 for us.

“It was just amazing,” Nick remarked, “and I said in my speech ‘This is an opportunity for everybody to be part of making a difference for the future of MND. I want you to be a part of that future, so please keep giving.’ And people did, they were very generous.”

For all his fundraising achievements, Nick’s contribution to the MND community goes beyond raising money. As a member of our Translational Research Review Committee, he helps assess research applications and contributes his perspective as someone living with MND.

“It’s been great,” he said. “I’m not in any medical field, but I did do a science degree, so I have a little hint of a scientific understanding. I really enjoy reading the papers and having the opportunity to comment on them.

“The hard bit is giving them a score, but it’s good for me to be able to try and assess it and look at the areas of research I think are most widely applicable. Jill and I go to a local support group and there’s about 10 people there with MND. So we’re able to talk to them about the areas they’d like to see improvements in too."

Nick has also attended one of our Scientific Advisory Board meetings and participated in workshops designed to help shape future research priorities. His involvement with us has also given him insight into the progress being made by researchers, leaving him optimistic about the pace of MND research.

“In the three years since my diagnosis, and since going to the Scientific Advisory Meeting last year, I can see there are areas where researchers are really starting to get a grasp of some aspects of MND, which is a complex multi-faceted disease,” Nick remarked. “I feel there is light at the end of the tunnel.

“Occasionally I meet people and they ask if I’m taking medication, and I don’t know whether they think I’m not being honest when I say there isn’t actually anything. The riluzole that I do take, doesn’t really make any difference. That’s the bit that people don’t understand, and that we need to convey, advocate for and continue to work for.”

Nick went on: “As I said in my speech at the ball, I hope that for some people, I’ll be the last person they know that gets an MND diagnosis for which there won’t be a treatment.”

That hope remains one of the driving forces behind Nick’s fundraising.

“I feel very engaged with the Foundation and what you’re trying to achieve, so I’ve got to keep getting on my trike and coming up with good ideas to raise money!” He stated. “I’m less able now, I don’t think I’d get down to Sennen on the trike again, but I’m very keen to keep involved with yourselves and continue fundraising, do as much as possible. I’ve set myself a new target of £250,000.”

When asked what he hopes people will take away from his story, Nick returns to the mindset and motto that carries him through life:

“MND in itself doesn’t bring great cheer, but you can live a full life. It's just a different life with different horizons, and it’s accepting that your horizons are more limited. This is me now, the me that used to be isn't here anymore, so I do what I can, and I don’t dwell on what I can’t.”

To find out how you can get involved like Nick and help us towards our vision of a world free of MND, see our Take Action page here.