Saturday 5 April 2008
New Zealand man takes on bike challenge for fatal disease research
Six months ago, New Zealand-born Duncan Bayly was living in Amsterdam, happily working in IT, travelling around Europe
for stints at a time, and swimming regularly. Having also lived in Melbourne and London over the past few years, he was
looking forward to the next challenge, including making a short film on life in Amsterdam. A life not so dissimilar to
many people we know. Perhaps even our own.
Then he was told he had five years to live.
The 29-year old from Wellington was diagnosed with Motor Neurone Disease (MND) – a debilitating neurological condition
that affects the nerves in the brain and spinal stem that control voluntary muscles. As the nerves die out, the muscles
waste and atrophy, spreading from the hands and feet to the arms and legs. Speaking and swallowing can be impaired. Once
the diaphragm is affected, breathing is restricted. The disease is fatal. There is no cure, and no treatment.
“I noticed a weakness and lack of control in my hand. I couldn’t do simple things like take my card out of the cash
point and click my fingers with my left hand. And when I started with a slightly jerky walk, I thought I’d been
overdoing the Dutch cycling,” Duncan, now 30, says.
“So to be told you have a fatal disease – nothing can prepare you for the shock and anger. I was upset, then annoyed – I
guess all the usual reaction phases that people go through when told they have a disease that’s going to kill them in a
few years.”
According to the Motor Neurone Disease Association (UK), MND affects around 5000 people in the UK alone at anyone time,
and at least five people a day die from MND. The condition affects men more than women, and the exact cause of MND
remains a mystery. Life expectancy for most people is two to five years, but about half will die within 14 months of
diagnosis.
However, there is some hope. Research has been progressing and the identification of Riluzole as a medication to extend
lifespan by three to six months has thrown up many clues and avenues for research into the cause of this disease and how
pharmaceuticals can be used to treat, slow and finally halt the progression of symptoms.
Since diagnosis, Duncan has been touched by the number of people who have offered their help and support, but
heartbroken by the response he’s had to give – “there’s nothing that can be done.”
“But I then got my act together, and not only did I take the chance to stop deferring and really start living –
including trips to India, Japan and Thailand in the past few months and learning to scuba dive – but I also decided we
have to do something,” he says.
“Helping the researchers of this condition may help me – or it may not. But I still want to help those who are diagnosed
with Motor Neurone Disease in the future.”
On the weekend of 3-4 May 2008, Duncan will cycle from Amsterdam in the Netherlands to London in the UK. He’s raising
money for the ride, with all funds being donated to MND research.
Starting in Vondelpark in Amsterdam to Victoria Park London, via Hoek van Holland and the ferry to Harwich, Duncan says
“it should be a beautiful ride, with Dutch tulip fields and rolling English countryside.” It will be a total of about
210 kms.
Friends of Duncan’s around the world will be running events to coincide with the ride, including the Drinks for MND in
Melbourne on 3 May.
For now, Duncan is training to tackle his upcoming challenge and is urging people to support the cause by participating
or donating.
“Having MND and coming to terms with what it means for my life, I can be philosophical. But this is a chance for friends
and family to do something constructive and positive, and will hopefully work towards a goal of discovering how to slow
down or prevent Motor Neurone Disease.”
ENDS