Motor Neurone Disease kills a third of people within a year and more than half within two years of diagnosis.
Over 400 people in Scotland are living with the degenerative condition, which occurs when specialist nerve cells in the brain and spinal cord stop functioning properly. And there is no effective treatment or cure, yet.
Scots author and wine specialist Davy Zyw was only 30 years old when he received the “life-shattering MND diagnosis” which changed his entire life.
That was two years ago and he admits that he is on borrowed time.
On Wednesday (August 12), the newlywed will join with his twin brother Tommy Zyw, director at The Scottish Gallery, to cycle the North Coast 500 over four days as part of moves to find a cure.
Davy and Tommy training in Patagonia
The arduous 516-mile scenic route around the north coast of Scotland, starting and ending at Inverness Castle is in aid of My Name'5 Doddie Foundation, the charity set up by Scottish rugby legend Doddie Weir who is currently taking part in a £4m clinical trial which aims to find treatments that can slow, stop or reverse disease progression.
It will not just support research into causes and potential cures, it will also provide grants to those who live with it to enable as fulfilled a life as possible.
"I thought I could be on a ventilator two years after my diagnosis, but instead I’m preparing for a 500 mile bike ride, I feel incredibly lucky," admitted Davy who was warned by doctors when diagnosed to avoid strenuous activity.
"As we head toward the two-year anniversary since my diagnosis, I want to help drive awareness of this life-shattering disease and do my bit to help find a cure when I still have power in my legs, lead in my pecker and enough grip in my hands to hold my handlebars," said the Edinburgh author.
"It’s been a difficult journey to get to today, where I have accepted my lot, and I am ready to share this with you all. Every pound we raise and every pedal we push will go towards finding a cure and raising awareness for people living with the disease. People like me.
Davy training in the Cairngorms in January
The charity ride had been planned for May 2020 but was rescheduled to later this month due to the pandemic.
Davy and Tommy will be accompanied by their younger brother Sorley and four friends.
There is support from famed Scottish artist Kate Downie who 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 will also be available and The Scottish Gallery will host a series of online events in aid of the event.
Davy admits that the challenge in the marathon ride, is whether his body can deal with it.
The writer of two non-fiction books about wine and champagne, is already suffering the effects of MND, and admits there is some shaking and wasting of muscles in his left hand and arm and some loss of function in one hand. His left hand is now so weak he cannot squeeze a tube of toothpaste. "The endgame of MND is being paralyzed, your mind left whole to review the progress of your condition whilst being prisoned in a body which you cannot function," said Davy.
"This is a difficult conclusion to face in life for anyone. But there is no point wallowing in self pity as I will miss the best times of my life, and the best of my health. And I like being active.
"It is depressing watching my left arm and hand loose strength, dexterity and function but considering I thought I could be on a ventilator 2 years after my diagnosis, but instead I’m preparing for a 500 mile bike ride, I feel incredibly lucky.
"Every day is a good day and I fight against the disease at every opportunity. I see my health sliding down an icy incline, so I have to run up the hill to stay in charge. I don’t take no for an answer and I live a life without compromise. I rest well, I eat well, I am on a lot of medication which slows the worst of the progression. I drink great wine; life is too short."
"I’m looking forward to seeing the finish line, that is really appealing!
"But really, I’m looking forward to the journey itself, being with my brothers and friends on the road as a pack.
"I think anyone taking on 500 miles over four days would be a bit worried, you’d have to be mad not to be. Especially with the inclement weather of Bonnie Scotland. Cold and fatigue make my symptoms worse, so I am nervous if I get too exposed.
Training in the Highlands
"When I was diagnosed, I was told to avoid strenuous activity and not to put undue pressure on my nervous system which is already under duress. Doctors said I would be lucky to maintain my fitness and health in life, rather than get fitter before the disease really took a hold of me. So when we started training for this challenge, I didn’t know how my body was going to react to the amount of strain I would put it through."
Davy has received a specially signed bike and helmet from cycling legends Mario Cipollini and Alessandro De Marchi in advance of the ride later this month.
Their route circumnavigates Scotland’s remote coastline and climbs the total equivalent height of Mount Everest. Navigating from Inverness, through Applecross, Torridon, Ullapool, Durness, Caithness and Dingwall, the physically demanding route is famed for its magnificent views and uncompromising landscape.
In preparation, during lockdown the brothers have had to ride indoors on turbo trainers.
Between them, the duo have cycled over 6,000 miles in preparation and Davy says: "We are as ready as we will ever be now! Even after my diagnosis, we are still very competitive which fuels us on even harder.
"At the back of my mind there was a fear that I will actually exacerbate my condition by doing this challenge. But I have cycled 3000 miles since then, I feel strong and fitter than I ever have. Although the future of my health is uncertain, my hand is weak, my energy levels low, and sometimes my cramps are so severe I can’t use my arms, I feel bloody fantastic. Bring the 500-mile ride on; I’m already looking forward to our next big challenge.
"A challenge of the training was being in lockdown, cycling indoors or on the road solo. You need strength in your legs for long distance riding of course, but mental strength and motivation often comes from the people and team you are with. The highlight had to be coming out of lockdown when we could ride (at a distance) but together on the road.
"This meant lot of racing, chasing and a lot of laughs. Cycling is tough, but it has to be fun. We are so fortunate to have the access to such incredible landscapes and roads from Edinburgh, which we don’t take for granted."
Davy and Tommy Zyw wearing charity T-shirts
The MND clinical trial launched in January was open to almost every person in Scotland with the degenerative condition which sees muscles waste away after a loss of nerve cells that control movement, speech and breathing.
While typical clinical trials focus on a single drug, MND-SMART will allow more than one treatment to be tested at a time, giving patients a higher chance of receiving an active treatment, rather than the placebo.
MND Scotland has invested £1.5 million, half of the charity's annual turnover, to allow the pioneering research it describes as "ground-breaking" to take place.
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