Two years ago, aged just 30, Davy Zyw was diagnosed with Motor Neurone Disease. The average life expectancy of someone with MND – an incurable condition that affects the brain and nerves – is just two years. To mark the second anniversary of his devastating discovery, Davy will ride the North Coast 500.
He will complete the 500-mile road route – with more than 30,000ft of ascent – in north-west Scotland over just fours day. The daily rides will be between 110 and 130 miles and Davy expects to be in the saddle for 10 hours each day. He is being accompanied by his twin, Tommy, one of his younger brothers, Sorley, 27, and six friends.
Already Davy, of Edinburgh, has raised more than £60,000 for the charity, My Name’5 Doddie Foundation, which was founded by Scottish rugby legend Doddie Weir. Davy has been supported by Doddie, who also has MND, with advice and treatments.
“The diagnosis was shocking. I am young and it is a rare illness,” says Davy, who married Yvie last year, “But while my physical health is sliding downhill, I want to try to keep pushing uphill in terms of what I can do.
“I am convinced that cycling has kept me strong and has slowed the degenerative effects of the disease.
“The North Coast 500 will be tough but I want to do something to give back to Doddie and his charity.”
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A wine and outdoors enthusiast
Davy left school at 16 to train as a chef and then moved into the wine business. He made his name in the wine trade working as a sommelier at Michel Roux Jnr’s Le Gavroche and as a wine buyer, now for Berry Bros & Rudd. He is also the author of two books on champagne and sparkling wine.
A keen snowboarder, Davy had a stint in the Alps as a competitor and sponsored rider and continues to snowboard when he can.
It was when he suffered what he thought was cramp in his left thumb while snowboarding in Canada, that he started on the road to the eventual diagnosis of MND.
He said: “There is no test for MND and so it was a process of elimination. I attended dozens of hospital appointments and eventually they told me it was MND.
“It is very rare to be diagnosed as young as 30 – you are more likely to be struck by lightning while surfing. It is also a bad one. MND is incurable, degenerative and paralysing.
“It strips you of your nerve cells controlling motor function, which means your muscles waste away. As you lose control of your body, your mind remains intact reviewing the disease’s progress before it beats you to death’s door. There are many unknowns, but 50 per cent diagnosed with MND die within two years.
“I am lucky because I am on the right side of the 50 per cent. So, every day is a good day.”
Although Davy was told by his consultant to avoid “high threshold” exercise, he believes that exercise has been a benefit to his health. Davy said: “I swear that a positive mind-set, good wine, fresh air and activity are helping.
“Apart from the emotional weight, my physical symptoms amount to a shake and a wasting of muscles in my left hand and arm. I also lack of energy and I have a progressive loss of hand function.
“I may manage for a couple of years more to be able to hold handle-bars – and open wine.”
London to home in Edinburgh
After Davy’s diagnosis, he moved from London back to his home city of Edinburgh and describes his life in Scotland as “pretty amazing”. He said: “I have the countryside on my doorstep and I cycle as much as I can. I head to East Lothian and the Borders.
“The cycling has physical benefits and it is a mental release, too. I think that keeping fit makes me mentally positiv and I am sure that cycling is holding back many of the degenerative symptoms.”
To compensate for the more limited movement of his left hand, Davy has adapted his brakes and gear levers on his bike. He said: “I’ve basically swapped them around, left to right. I can still manage to ride, brake and change gear.”
It is the cold that makes Davy’s symptoms worsen – and this is an aspect of the NC500 charity ride that most worries him.
He said: “I have been training since January 1 and we had planned to do the ride in April, two years after my diagnosis, but lockdown came along. That has actually given us more time to train and we will now set off on August 12.
“We leave from Inverness and arrive back in Inverness on August 15, all things going well.
“I think will be fine over these distances, although it is very hilly. Day two is 130 miles with 10,000ft of ascent, so that will be tough.
“I have to make sure I do not get cold. The cold worsens my symptoms.”
Davy, Tommy, Sorley and friends will be supported by mum Jenny Brown, a Scottish literary agent, step-dad Sandy Richardson and another brother, Felix, 20.
Davy said: “We’ll have support vehicles so I’ll be able to get warm if I need to. I am hoping the weather will be okay. I really hope for this because it will be hard enough.”
Davy hopes his MND NC500 ride will raise money for his chosen charity and awareness of the disease. He said: “My Name’5 Doddie promotes awareness, funds research for a cure and helps people like me, and their families, to live their best lives. This is the finest way we can try to find a cure for this appalling disease that can strike anyone at any time, whatever age people may be.”
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