Liam

Meet Liam...

Liam was diagnosed with MND in December 2021 after noticing weakness in his feet and ankles during karate sessions. With the support of his family and friends he has taken part in various fundraising activities from skydiving to marathons. Liam has been able to adapt his home with financial support grants form the MND Association making his home safe and comfortable as his MND progresses. He advocates for maintaining a positive outlook and the importance of making every day matter.

Liam shared his story with us in June 2025.

Life before MND

"I used to be very active."

I work in medical research for a huge American company with subsidiaries all over the place. I’ve been with the same company for 30 years, but I’ve done different roles throughout. It’s an interesting job and it's been essential to keeping me distracted. 

I used to be very active. I did karate for years, I loved driving my cars, loved cycling, going out and socialising with friends and we enjoyed family holidays. We lived a normal life, really. I was teaching karate seven days a week and had my own little karate school. 

Early symptoms

"The GP sent me straight to the hospital."

My feet started not dragging exactly, but I couldn’t pick my toes up as much. I noticed it in karate too. That was the start and it just progressed from there. My ankles literally stopped working meaning my feet were hanging. It started at the ankles and stayed there for a long time.

We were at a little Christmas fair in the village and there’s this tiny slope from the road to the house. It’s barely an incline, but I couldn’t get up it. From that day, my friends and family badgered me and badgered me. They took me to the pub and told me to go to the doctor’s. I got home and they were texting me: ‘I’m going to send this every day until you book in.'

The GP sent me straight to the hospital. I went to the day case unit and they admitted me that night. That was Thursday. By Tuesday, I came out with a terminal diagnosis.

Diagnosis

"By the time the official diagnosis came, I was kind of… relieved."

It was a shock at first, going from being very active to not being active. But I think I’ve got my head around that now. Bear in mind, this was two weeks after Kevin Sinfield did that 101-mile run to Rob at the rugby stadium. I’d watched it in tears, donating, probably knowing deep down that I had MND. That might be why I didn’t go to the doctor sooner.

My wife was with me when they gave me the news, but I already knew and to be honest, I wasn’t really shocked. By the time the official diagnosis came, I was kind of… relieved.

MND Specialist Nurse

"I was driving hand-controlled cars within about two weeks – thanks to my nurse. She’s just amazing."

The MND specialist nurse was in the room with the consultant when I got the diagnosis. He told me everything and left, but she stayed. She had an information booklet from the MND Association. The nurse sat down and went through the booklet with me, explained what I was entitled to and told me she had registered me as a member with the MND Association. It was brilliant. I was driving hand-controlled cars within about two weeks – thanks to my nurse. She’s just amazing.

Fundraising

"All of that was born out of five middle-aged men half-cut in a beer tent talking daft."

The magic always starts at the beer tent outside Derby County’s ground. That tent is the birthplace of our madness. After a couple of pints, all the ideas come flooding in. My sister-in-law’s husband, my nephew, my niece, we’re all there throwing around ideas. That’s where we came up with the skydiving plan. I could’ve done it from 8,000 feet which is standard or 10,000 feet which is more extreme. But we decided to go to Devon and jump out at 15,000 feet. I’ve always wanted to jump out of a plane.

New Year comes around and we’re thinking, ‘What’s next?’ Derby’s ground, Pride Park, has a huge car park and from the beer tent you can see the velodrome. I love cycling, I used to ride loads. So over about half an hour (and a couple more pints), we decided, ‘Let’s do a marathon in the velodrome this summer.’ The week after, we parked up and went in properly. My wife helped organise it and suddenly it was happening. A full-blown charity marathon. We raised another £10,000. The awareness was incredible. 

All of that was born out of four or five middle-aged men half-cut in a beer tent talking daft.

Then I did the Extra Mile event with Kevin Sinfield. The man’s made of granite. Massive inspiration. And on the way home I thought, ‘Right, I’m doing something again this year.’ I can’t do the big physical stuff anymore. I can’t skydive or wheel a marathon, but I can get others involved. People in t-shirts, walking their dogs, going to the pub. People out there, raising awareness, talking to each other. That’s what it’s about now.

Family dynamics and adapting the home

"They hug me and they’ll hold on a bit longer than usual."

I’ve got good people around me. Really positive people who are going through their own battles, but we still turn up for each other, laugh with each other, and support each other. They hug me and they’ll hold on a bit longer than usual. 

I don’t have kids with my wife Nicky. We’re a blended family. I’ve got grown-up kids. My son didn’t take the news well, initially. He visits often, but we don’t talk about it. Everyone deals with it differently. Nicky’s lad just turned 30. He still lives at home and honestly, it’s great having him around. Even before I came home from hospital they were getting the house ready. Handrails on the stairs, minor adaptations. Quiet, steady support.

Association support

"Everyone needs to know this help is there."

And then, of course, there’s the MND Association. Without their grant I wouldn’t have had the stairlift. I wouldn’t be able to get upstairs. But because of them, I’ve had two extra years of sleeping in my own bed and that means more than anyone realises.

The downstairs bathroom has been an incredible benefit. I mean, when you combine that with the stairlift, it’s hard not to think, ‘What would I do without them? Where would I shower? What toilet would I use? How would I clean myself each day?’ The MND Association gave me the boost to get those things. And it's not just the big stuff either, they’ve helped with ramps around the house, bits of kit that just make life doable.

My OT’s been amazing and in conjunction with the MND Association, things just… happen. That support is immeasurable. 

Everyone needs to know this help is there. Having the Association there is invaluable.

Raising awareness

"I’m not here to make people comfortable."

Every day six people are diagnosed with MND and six people die from it. Every. Single. Day. That’s a bloody awful statistic.  

I suppose I’m lucky in the sense that I’ve got the slow version. It means I deteriorate gradually so I do understand I’m in a kind of privileged position. I’ve got more time to sit and talk to people, like I did the other week in Nottingham with doctors and consultants and others with MND. I’m not here to make people comfortable. I’m here to kick this disease in the teeth, while I still can. 

Advice to others

"You don’t owe anyone access to your emotional energy."

Accept the diagnosis, let the grief wash over you. Wallow if you need to. Take your time. Don’t try to be Mr or Mrs Positive from day one, you’ll implode.

When it comes to people around you, if someone makes you feel worse every time you speak to them, stop speaking to them. You don’t owe anyone access to your emotional energy. 

You’ve got a terminal diagnosis. Wallow, rage, break down. But once you’re done, once that fog starts to lift, think about the positives. Because they are there. They outweigh the negatives.