Six years ago Otorohanga farmer Stephen Blank got the "kick in the guts" he knew was coming.
But he has vowed not to let the disease that is slowly robbing him of his body stop him living life.
For four years he knew something was not quite right – his legs would suddenly stop working and he would randomly fall over.
So when the doctors finally told him he had motor neurone disease (MND) his worst fears were realised.
"It was always in the back of my mind," Mr Blank, a former fencer, said.
The father of two kept working for four months, but it came to a point where his wife, Catherine, no longer asked if he'd fallen over at work, but "how many times?"
So he gave up and started working around their small farm.
His nerves are degenerating, gradually weakening his muscles, and causing loss of mobility to his limbs. Though his brain is not affected, about a year ago his speech started to go.
"That was the hardest thing – because I can't join a conversation," he tells the Times slowly, concentrating intensely before uttering each slightly slurred word. "My confidence has gone. It's very frustrating."
There is no known cure to stop the degeneration, which eventually leads to death.
"When I hear someone's got cancer, I think 'at least they've got a fighting chance' – I haven't."
Despite this prognosis, Mr Blank has tried not to let the disease stop him living life.
"I wasn't going to let it get the better of me."
He tends their land when he can in his motorised wheelchair. He built his own wooden ramp to allow him to get up to the paddock – and he built the wooden fence bordering the paddock.
Mr Blank is taking part in a comprehensive Massey University survey into links between occupational and environmental backgrounds of those with MND.
It is hoped the survey will shed light on what causes MND, which has a higher incidence in men. This has led to suspicions that chemical and contaminant exposure might increase the risk of developing the disease.
Mrs Blank said the hardest thing for her was watching how some people treated her husband – talking to him like he was stupid.
"His mind is just fine. I suppose I just want people to have a better understanding of MND."
To find out more about MND or help support about 300 people in New Zealand living with it visit mnda.org.nz
- © Fairfax NZ News
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