Behind the hysterics of the viral Ice Bucket Challenge are the people living with motor neuron disease like Tenambit’s Malcolm Buck.
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In less than three years it has rendered the volcano-climbing geologist unable to walk, barely able to use his arms and struggling to speak.
Unaware of anyone else with the disease in Maitland, Dr Buck was compelled to do the challenge and give the cause a face here.
“[The ice bucket challenge] gives people the idea of being so cold, but not being able to raise their body temperature,” he said.
The ice bucket challenge started in the US when a young university student doused himself in ice water soon after his diagnosis with MND.
This triggered a rash of nominations and counter-challenges for people to get wet or pay up.
Dr Buck was diagnosed in September 2011 and stood in the Maitland City Council elections in 12 months later to demonstrate that people with MND were still of sound mind, but trapped in a failing body.
Facing the ice bucket, Dr Buck challenged John Hunter rheumatologist Stephen Oakley, Maitland Mercury journalist Sam Norris, and Maitland’s three east ward councillors – Peter Garnham, Bob Geoghegan and Ben Whiting.
“These nominations might raise a stink,” he said. “But it’s important to raise awareness.”
The Mercury previously documented Dr Buck’s condition in July last year when he explained how the disease, which attacks the nerve sells, made him feel.
“The whole issue of self-euthanasia is very much on my mind,” he said then.
“The end point is that you lose the ability to swallow and breathe. It’s a terrible disease.”
In the US, where MND is known as ALS (amyotrophic lateral sclerosis), the challenge has raised $25 million.
In the UK it has raised £1.5 million and Australia has kicked in $700,000 so far.
Australia has embraced the phenomena despite it being winter here, not summer.
The Ice Bucket Challenge is being taken up by some of Australia’s most famous people, the first being Russell Crowe who Ricky Gervais challenged.
“Since the first MND Ice Bucket Challenge in Australia two weeks ago, MND Australia has received $700,000 in donations from 14,000 supporters,” MND Australia executive officer (research) Janet Nash said.
“Around half of this money has been given for research to MND Australia’s research arm, the MND Research Institute of Australia.”
