Fighting with every fibre: Davy Żyw, riding on with motor neurone disease

By the age of 30 many of us really start to understand what we want in life, and fortunately, remain young enough to go after it. There's a greater sense of who you are and the pressures and anxieties you had in your twenties start to fall to the wayside. You're finding your stride in life as you enter this real adult era. The last thing you expect is to be diagnosed with a life changing, incurable disease. However, for Davy Żyw this was the case. Aged just 30, he was diagnosed with motor neurone disease (MND). 

“It was a bombshell when I got diagnosed,” He told Rouleur. “I knew very little about it. The only real reference point I had in 2018 was Stephen Hawking.”

It all began when he had a numb left hand when he was away snowboarding. Putting it down to the cold weather, it wasn’t until he saw a hand specialist that it was considered a greater threat might be the cause. A process of elimination over the next few months led to the diagnosis of MND. “It was a very testing time for me and my family,” he said. “It was obviously hard for me but I think it’s more difficult for my loved ones as I am told what is going on but they have to try and understand the ins and outs of what I am going through.” 

Żyw was hit with the hard facts that 50% of people diagnosed with MND die within two years. Questioning the time he had left at just the age of 30 could have led him down a dark tunnel, instead he quickly learnt that if he was to wallow in self pity and anger he would miss the best days of his health and active life. This gave him a great sense of clarity on what he wanted to do, and that included being on a bike. 

“I’ve always been into cycling. I learned to ride very young because my step dad is a big cyclist – cycling all over the world. I myself wasn’t a diehard cyclist but enjoyed taking part in sportives like RideLondon. But what the bike has allowed me to do now is to prove some of the specialists and doctors who initially saw me wrong. They all said that I should slow down any physical activity as I may exacerbate some of the symptoms because my nervous system was already under pressure and exercise would stress it out even further. 

“But being on the bike is hugely empowering and I am showing everyone that I am actually getting fitter. Week on week I am smashing PBs on Strava and this has allowed me to gain back some of my confidence. When I am on the bike I am not on this sliding slope of decline, I ride just like everyone else. It has been a big saviour for me.” 

When the doctors said that Żyw was to limit his physical activity he found this really hard. “I am already looking down the barrel of a gun with this neurological incurable disease where I am going to be an emotionless, lifeless burden on my family, and then the doctor also told me I had to stop doing what I loved doing and that was cycling, the gym and running,” Żyw said. 

Being advised to wait and see how the disease would manifest, Żyw stopped his exercise regime but found this was the darkest period of his diagnosis. “Fitness is like my church,” he said. “I was desperate to go to my doctors and get answers and more updates on my condition. In the end, I was the one giving the answers.” 

MND can manifest itself differently in different people, and there is a wide spectrum of cases. Sadly, many people who are diagnosed don’t live long enough to have their cases understood. Żyw is a unique case, being only 30 years old and very fit, the disease has been slow to progress in his body. In April, it will have been five years since Żyw was diagnosed. Over time he has found he can push himself more and more in terms of exercise, and not long after he was diagnosed, he started to gain control back in his life, continuing with the life he wanted to live, doing the things he loved instead of waiting for the inevitable doom. 

“I now find that if I stop exercising, I actually get worse. My muscles begin to cramp and I start to lose flexibility and movement. So, I have to keep moving. It is like running up an icy slope – as soon as I stop, I will start to slide. That was why we started to plan cycling challenges to raise money for MND research.” 

In 2020, Żyw and some of his friends and family decided to ride Scotland’s North Coast 500 over four days. The 516-mile route would be no easy task for any rider, but for Żyw this was his first big challenge with MND. He knew he could ride 100 plus miles in one day but how his body would react by doing this amount of miles on back-to-back days was where the uncertainty crept in. “I was nervous,” he said. 

“But what helped me get my head around the North Coast 500 was that I knew people had completed the route before – we knew it was achievable. The next challenge we did in 2022, however, had never been done before. We knew people had done similar routes in terms of distance and elevation, but no one had done or completed this route – let alone someone with MND.”

Having completed the North Coast 500 route back in 2020, raising over £150,000 for MND in the process, Żyw and his friends decided to take it up a notch. In the summer of 2022, they took on the High 5 and cycled Scotland’s five highest roads – Ben Lawers, Cairnwell Pass, Lecht, Cairngorm and Bealach na Bà. At 265 miles (426km) with 19,000 feet (5,800m) of climbing, it’s classed as one of the toughest rides in the UK. 

Żyw worked in collaboration with Rapha and filmmaker Robbie Lawrence to produce a film that documented the High 5 ride (Video provided by Rapha)

“I was conscious that I was two years further down the line living with the condition. My upper body was worse and my hands were worse, and I certainly needed some adaptations on my bike to make the ride possible. For example, I can no longer use standard gears and need a Di2 groupset. These are the little things that had changed from the North Coast 500 ride.” 

They set off at 4am to make sure they had enough time to complete the challenge, but they still had to put in the night shift. “I remember arriving at the top of Cairngorm, so we had done the high four and were sitting at 130 miles – halfway. The next 100 miles were the most beautiful as we got to see the sun set over the Cairngorms. While we were feeling good, we were pretty tired and we still had the long slog to Inverness and across the West Coast through the night to get through. It felt like an impossible moment. 

“It was on the last climb when I started to think, where am I? When am I going to collapse? It was so wet, and when we finally got to the finish line 20 hours after starting, we could barely see a thing. All I felt was an incredible sense of relief. There were lots of hugs and tears, but I don’t think the achievement sank in at the time. 

“I am not very good at computing my emotions, especially in regards to my MND, so I tend to wrap them all up with the bike and these challenges. The lead-up and the training provide my mind with something to focus on and once it is complete there is a sense of achievement but also difficulty as I now go back to living a life with MND again.” 

Żyw has many mantras that he lives by to help him remain positive. One of them is that, if you put your mind to something, you can achieve it. But it’s not his mind that stops him from accomplishing these huge goals and sadly, that is one of the symptoms of MND. The disease attacks the nerves that control movement and gradually overtime as the condition develops their muscles no longer work – with the mind rarely affected. 

“On the High 5 I was always waiting for when the MND would kick in,” he said. “I was over four years down the line and while I was as fit as anyone riding their bike that day, I obviously have this caveat. Leaning over the bike is a lot of upper body work and by the time we reached Inverness it felt like I had done 1,000 push ups and I was on the last rep, just to try and keep myself upright. 

“The hardest part was the descents because my weight is through my hands rather than the saddle, and I found it was really hard to do the brakes too. So trying to use my hands and bounce on my arms was when I really started to struggle. But with that determination in mind, I knew I had to push through.” 

Both challenges have been completed by Żyw and his closest friends and family, including his twin brother Tommy. Having leaned on him the most throughout his diagnosis, battling through these immense distances with his twin brother by his side is extremely special. “We’ve all been on this journey. I am not the only one who is impacted by this, it is my loved ones too. Tommy was the architect for the High 5 and the fact he kept smiling throughout was very inspiring for me. 

“And Tommy never lets me get away with anything. Even on our birthday he dropped me! But that is how it is and I have a lot of admiration for that. It keeps me focused. If they treated me like I was wrapped up in cotton wool I wouldn’t be as fit or as motivated as I am to battle this condition. I just have to try and keep up.” 

Żyw's mentality is to seize the day, live for the moment and fight with every fibre of his being against this horrible disease. “The thing is, training is hard,” he said. “There is no point just going for a four or five hour cycle, you need to go for 10 to 12. That took a lot of time away from my family and now I just want to make sure I am present for them precious moments.” 

“However, the High 10 does have a nice ring to it…”

To help fund research and raise awareness of MND to help anyone touched by the condition, you can donate to Żyw's fundraised page.