‘Cruel, uncurable, unknown,’ Davy Zyw says, summing up motor neurone disease.
The 32-year-old newlywed from Edinburgh was diagnosed with the rapidly-progressing condition, which attacks the nervous system, two years ago.
It mainly affects people in their 60s and 70s so Davy was shocked to get the diagnosis. He was told he had MND after going to the doctor about a cramping sensation in his left-hand thumb that started while he was on a snowboarding trip to Whistler in Canada.
He tells Metro.co.uk: ‘At the time I blamed the cramping on the cold but it persisted.
‘Being diagnosed with motor neurone disease is rare at any age, but more common in people in their 70’s.
‘Receiving this bombshell at the age of 30 was a bit unexpected, to say the least. There is no family history and I led a healthy lifestyle.’
Since being diagnosed with the life-shortening condition, Davy has been determined to live life to the fullest and last May, he married the love of his life Yvie with dozens of friends and family gathered for the occasion.
He went on to honeymoon in Mexico and continued travelling around Europe as part of his job as a senior wine buyer for the Queen’s wine merchant and importer, Berry Bros and Rudd.
The wine connoisseur, who has penned two books about his favourite tipples, says the company has been ‘incredibly supportive’ of his situation and it has even selected the Motor Neurone Disease Association as their charity partner.
What is motor neurone disease?
- MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes in their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.
- MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.
- MND can affect adults of any age, but usually when they are 50 years old or more. The disease is more common in men than women, but this evens out with age.
- MND affects up to 5,000 adults in the UK at any one time.
This year, in a bid to raise money and awareness about the neurological disease, Davy decided to plan a charity bike ride with his twin brother Tommy and five friends.
He planned to cycle the 500-mile North Coast route of rural Scotland in four days and launched a JustGiving page, with proceeds going to the My Name’5 Doddie Foundation.
The charity, which aids research into motor neurone disease, was founded by Scottish rugby player Doddie Weir OBE following his diagnosis in 2017.
Davy was shocked when he surpassed his initial fundraising goal of £5,000 in just two days.
The total now stands at more than £52,000.
His bike ride was due to take place at the beginning of May but due to the coronavirus pandemic, it will be rescheduled for when the situation allows.
Davy says: ‘We are ready to jump on our bikes and do it as soon as the lockdown is lifted, I hope this summer.
‘The route is beautiful but high winds, torrential rain and flesh-eating midges are common up there which will make the trip tough but bring it on!
‘We just hope the weather holds out for us.’
Davy has noticed his condition deteriorate since his diagnosis and his left hand is now so weak he can’t squeeze a tube of toothpaste.
He adds: ‘I can now feel the same thing happening on my right side.
‘So, if I calculate how quickly my decline was in my left hand, I reckon I have a couple of years of living ‘normally’ before I need daily help and care.’
When it comes to support Davy, who is one of five boys, has been ‘humbled’ by the number of people who have reached out to him and donated towards his cause.
But the cycling enthusiast says his wife, whom he met while studying in Brighton, has been his ‘rock’ from the outset.
‘I am lucky to have amazing support around me but my wife has guided me through the stormy seas of the last couple of years,’ Davy tells us.
‘She has taken on an uncertain future, and has decided to live 100% for now. I admire her tremendously.’
‘Although, when it comes to cycling my twin Tommy is my shield as I like to hide in his slipstream!’
Asked what his message would be to others coping with motor neurone disease, Davy concludes: ‘This is for everyone, not just others with motor neurone disease. Good luck.
‘Keep a positive mental attitude, smile at life, and drink good wine – life really is too short.’
To help support Davy’s 500-mile charity bike ride, visit his JustGiving page.
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source https://metro.co.uk/2020/05/14/newlywed-diagnosed-motor-neurone-disease-30-shocked-raises-50k-post-coronavirus-bike-ride-12701383/
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