EVERY so often, you have a conversation with someone who makes you rethink your whole attitude to life. Or, at the very least, reminds you to be grateful.
I had one of those conversations last week with Davy Zyw – an author and wine specialist from Edinburgh— who was diagnosed with motor neurone disease (MND) in 2018 at the age of 30. In order to get their heads around his diagnosis, Davy and his twin brother, Tommy, took sabbaticals and embarked on the trip of a lifetime that included bike-packing around Patagonia, snowboarding in Canada and surfing in the Caribbean.
On their return to Scotland, the brothers decided to take on a challenge that would raise money and awareness of this cruel disease – which kills 50% of those diagnosed within two years – while also highlighting more encouraging stories. “It was a really life-affirming trip Tom and I had and there’s one major positive that came out of it – I was feeling fitter, stronger and healthier than I ever had done before,” said Davy.
For the brothers, the decision to complete a challenge at home was twofold.
“We forget how spectacular and incredible the landscape is and that the routes we have in Scotland are some of the best in the world so we wanted to celebrate and fundraise with the backdrop of our home nation,” explained Davy. “The North Coast 500 is a sizeable route and a cycle that will be challenging but something we can do together.”
Their route circumnavigates Scotland’s remote coastline and climbs the equivalent height of Mount Everest. Navigating from Inverness, through Applecross, Torridon, Ullapool, Durness, Caithness and Dingwall, this physically-demanding route is famed for its magnificent views and uncompromising landscape.
The brothers plan to cycle the 500-mile route over the next four days – an arduous challenge for anyone. Famed Scottish artist Kate Downie will create a limited-edition work of the Zyw brothers cycling across the Forth Road Bridge to help raise funds. T-shirts designed by London-based artist and interior designer Luke Edward Hall are available and The Scottish Gallery will host a series of online events in aid of the event.
MND degenerates muscles, stripping control and mobility. The active mind becomes trapped in a paralysed body. While Davy has begun to experience symptoms, he is determined to make the most of the mobility he does have.
“Although my hand is weak and I can’t grip very well, my legs are really fit,” he said. “I’m feeling really positive, I’m looking forward to getting going now so I suppose this whole thing is really a middle finger up at the disease. It’s about me taking charge of my life, I’m not letting MND dictate what I do.”
And what Davy, Tommy and the rest of their team have done is smash their initial £5,000 fundraising target and are currently sitting with more than £73,000 in the pot. The money raised will go to My Name’5 Doddie Foundation, a charity started by Scottish rugby legend Doddie Weir, who was diagnosed with MND in 2017.
Meeting at a cycling event shortly after Davy’s diagnosis, Doddie has been a source of great support and friendship for Davy. “He’s given me lots of tips and information that have been really useful,” Davy said. “We would see each other once a week before lockdown at a chiropractor appointment and although MND is always present, we have a lot of good banter together. He’s just a fun and loving guy.”
What’s clear from the moment we start chatting is Davy’s incredibly positive attitude, which is both humbling and inspiring. “The reality is I’m two years on, I’m not on a ventilator, I’m not in a wheelchair, I’m preparing for a 500-mile bike ride and I’ve never been fitter,” he said. “I feel incredibly lucky and incredibly fortunate that my symptoms are moving slower. I say that, but I think a positive mental attitude, good food, sleeping well, good wine and all the physical activity I’ve done has definitely been protecting me from the worst of it.”
For Davy’s twin brother, Tommy, and the rest of their family, while it’s been incredibly difficult to accept the reality of the situation, they’ve opted to follow Davy’s lead and are determined to make each day count.
Tommy said: “I’ve been through multiple stages of thinking about Davy’s diagnosis and, if I’m honest, I haven’t come to terms with it yet. But Davy’s strength, bravery and positivity has been the thing that has given myself and our friends and family great support. The fact is there is no point wallowing because if that’s what you do, you’ll miss the best times we have together, so you have to live life to the absolute maximum and that has been our mission since the diagnosis and what we’ll continue to do.”
The charity ride had been planned for May, but was rescheduled due to the pandemic. Davy and Tommy will be accompanied by their younger brother, Sorley, and four friends, including a Royal Marine commando. They will be supported on the ride by their parents’ camper and a Royal Navy van.