WHEN Davy Żyw was asked what the worst thing about having motor neurone disease (MND) was, he said: “Today is the best you’re going to be - because you’ll only be worse tomorrow.”
The Edinburgh dad and husband was diagnosed with the life-limiting condition five years ago aged 30.
One minute his whole life was ahead of him, the next minute he was emergency planning in the knowledge he now had just a couple of years to live.
Thankfully, Żyw is still here and while “today is the best you’re going to be” might feel devastating when he looks forward, the now 36-year-old has channelled that tough fact into making the most of life in the here and now.
“It’s a life-limiting condition but it doesn’t mean I have to stop living,” he told the Sunday National.
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“Even before the diagnosis, I liked to keep busy and I hate people telling me 'no' in any aspect of life.
“When I’m told by doctors 'you can’t do X and Y because of MND', my first thought is 'how am I going to prove you wrong?' So I continue to fight.”
Since contracting the terrible condition, Żyw has completed several mammoth cycling challenges including the North Coast 500 in four days and the "High 5" - a 275-mile route over the five highest roads in Scotland – all while raising more than £150,000 for MND causes.
Next month, he will join his friends for the last section of a cycle from Edinburgh to Rome in time for the Italy v Scotland game in this year’s Six Nations.
Żyw – who is a wine buyer for Berry Bros. & Rudd – told the Sunday National how he has noticed big changes in his body but is determined to keep riding for as long as he can.
He said: “I’m still very happy and I’ve got an amazing life and family.
“I started to notice changes in my left hand early on but it is all over me now and it is slowly getting worse. I can stand next to you in the street and you wouldn’t know anything was wrong but ask me to hold a pen, do a zip, use upper body strength, that’s when my symptoms are really exposed.
“It’s only going to get worse. That’s the sad thing with MND is that today is the best you’re going to be. Tomorrow I’m going to be worse.
“I can still push my pedals fine but using my hands and holding myself up for an extended period [is hard]. There are things I will need to manage on this ride.”
The cycle will involve four core riders taking turns to complete the 2700km distance between Murrayfield Stadium and the Stadio Olimpico.
Three other cyclists will join for individual stages, with Żyw finishing the ride off with the team from Nice in the south of France, to Rome.
After setting off on March 1, they will need to maintain an average speed of 17mph in order to complete the cycle by 5pm on March 8.
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Along the way, they will be raising vital funds for the My Name’5 Doddie Foundation, set up by former Scotland rugby star Doddie Weir who was diagnosed with MND in 2017 and later died in 2022.
“I’m really excited and nervous - it’s an amazing team and they have their work cut out,” said Żyw.
“We will be testing ourselves with sleep deprivation because when we’re off the bikes, we’re still going to be supporting the others so we’re not going to get a lot of sleep.
“The way I see it though, the more we do bonkers cycles like this, the more awareness we spread, the more society understands about MND.”
James Porteous said his childhood friend Żyw had been an “absolute inspiration” and he was determined to raise awareness of a disease many falsely believe is uncommon.
The 37-year-old - who will be relaying with James Snowdon, Seamus Sharkey and Greg Shevill - said it was by far the most daunting challenge he will have ever attempted.
Porteous, who owns Edinburgh’s Electric Spirit Co, said: “For most of us it’s the first kind of challenge we’ve done like this.
“He’s [Żyw] an absolute inspiration. What he’s done in terms of raising money for MND is incredible. The rides he’s done are mind-blowing.
“It’s great to see him still pounding on and doing everything he can to help other people and himself to try and put an end to this disease which a lot of people think is uncommon but it’s not.
“It’s massively underfunded, it doesn’t get the research grants it needs, and it’s not had a huge amount of progress in terms of treatment for it.”
He added: “We’re going to have to adapt to a weird rota for riding. We’re going to have to try and break our natural circadian rhythms to try and work effectively on this two-hours on, six-hours off format. It’s going to be very disruptive but if it was easy, we wouldn’t be doing it.”
Details for how to support the cycle can be found here and you can follow the group’s journey live at @rideformnd.
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