“I still have a good life. I’m just living it differently”: Ben’s story

Ben Lighting was diagnosed with motor neuron disease (MND) in 2023 after first noticing weakness in his left arm and shoulder.

A husband to Lucinda, proud dad to William and Molly, rugby enthusiast, author and advocate, Ben has spent the years since his diagnosis adapting to life with the disease while continuing to focus on the things that matter most to him - family, friends and making the most of every day.

Since his diagnosis, Ben has written a book about living positively with MND, become an advocate for research, and, alongside his family, helped raise thousands of pounds to support the MND community and research into effective treatments.

While MND has changed many aspects of life, Ben remains determined not to let the disease define him.

“I’ve had a full life,” he said. “I still have a good life. I’m just living it differently.”

When Ben was diagnosed, it wasn’t his own future that weighed most heavily on his mind, it was his family, friends and everyone around him.

“I drove home, then had a hug and a cry with my wife,” he recalled. “Not really for me. I was thinking about the family.”

As the reality of the diagnosis began to sink in, it wasn’t the practical challenges that troubled him most. It was the thought of the moments he might miss, in particular becoming a grandfather and watching William and Molly grow up.

“The odds are I won’t be there when the kids have children of their own,” he says. “I won’t be Grandad. That’s the stuff that makes me emotional.”

In the early days after diagnosis, Ben admits there were moments when he felt overwhelmed, but once the initial shock had settled, he made a conscious decision about how he wanted to approach life with MND. While many people talk about “fighting” the disease, Ben prefers a different mindset, instead focusing on the things he can control.

“The physical battle will be lost eventually,” he said. “It might take two years, five years or ten years. I think it’s more about accepting what you can’t control and working on the things you can.”

That philosophy eventually inspired him to write MND & Me: Facing up, taking control and living life to the full, a book designed to help others navigate the practical and emotional challenges that often follow diagnosis.

For Ben, however, taking control isn’t about trying to control his own MND. It’s about reducing uncertainty and helping both himself and his family feel prepared for whatever comes next.

Whether that’s understanding future care options, making adaptations around the home or learning about support that may be needed later on, Ben believes planning ahead allows him to focus on what matters most, and not spend every day thinking about MND.

“You put things in a box,” he explained. “Then you go and have a beer with your friends, watch a film with the kids or spend time with your family. You’re not thinking about it every day. You’re ready for it.”

And while MND inevitably brings difficult conversations and decisions, Ben is determined not to let the disease define his life.

His approach is simple: focus on what matters, accept what can't be changed and live as well as possible. While Ben accepts that there are currently no effective treatments for MND, he remains hopeful about the future. The significant progress made in research over the last decade gives him confidence that, with continued investment and collaboration, effective treatments for the majority of people living with MND could become a reality in the not-too-distant future.

Living with the disease has taught him lessons he never expected to learn about himself. It has shown him a resilience he didn't know he had and given him a new appreciation for the strength of those around him, particularly William and Molly.

Watching his children adapt to life after his diagnosis has been a source of pride, while the experience itself has challenged him to become more open and more accepting of support from others.

Throughout his life, Ben has been fiercely independent, so learning to ask for and accept help has not always come naturally. But the support he has received from family and friends, healthcare professionals and the wider MND community has changed his perspective.

Perhaps most unexpectedly, MND has changed the way he connects with the people closest to him. He has more meaningful conversations, letting go of the things that once seemed important and appreciating relationships in a different way. And joked that he is “a much nicer person” than he was before MND.

While MND is often associated with loss, Ben said it has also given him a greater appreciation for the people around him and the importance of making the most of the time he has.

Today, he spends much of his time advocating for further MND research, as a member of the UK MND Research Institute patient advisory group, helping ensure the voices of people like him and others living with the disease are heard. He believes “the real fight” against MND lies not with individuals living with the disease, but in ensuring research is properly funded, with high levels of collaboration and governments listen to the needs of the MND community.

While MND has brought challenges Ben’s family never expected, it has also highlighted the strength of the people around them. His wife Lucinda has taken on fundraising challenges, including a remarkable 53km run along the Thames, while Ben’s brother, Sam, organises an annual event at Woking Golf Club, that this year raised £17,000 for My Name’5 Doddie Foundation.

For Ben, sharing his story isn't about seeking sympathy. It's about helping others see that there is still a rewarding life to be lived after an MND diagnosis.

While the future may look different to the one he once imagined, his days remain filled with the things that matter most - Lucinda, William and Molly, family, friends, rugby and making memories together.

And that's exactly how he intends to keep living.

You can buy Ben’s book, MND & Me here. All profits will be split between MND Association and My Name’5 Doddie Foundation.