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Bike challenge for fatal disease research

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.”


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