He's going to die soon, but that isn't stopping Neil Ladyman from living life to the full.
The 53-year-old Wellingtonian has motor neurone disease. All going well, he has eight years left with his wife of 27 years, Olivia, and their three adult children.
He was diagnosed with MND nearly four years ago after six months of appointments with various health professionals.
He first noticed his leg wasn't quite right when he started losing squash matches.
The first year after diagnosis wasn't so bad: he could get around using a walking stick and continue working as a telecommunications consultant.
He went travelling and ticked off a bucket list, including paragliding in Australia and a cruise around the Mediterranean.
But his health went downhill over the next two years. He is now in a wheelchair and needs a machine to help him breathe.
He was one of 100 people to take part in a drug trial in the United States over 10 months from mid-2011, which gave him some hope.
He flew to San Francisco each month and every time he boarded the plane his mobility decreased.
Then, at the end of the trial, he was told he had been taking a placebo.
But he said he wasn't disheartened as it meant his participation could lead to help for him down the line, or for his family or other sufferers.
MND affects people differently. It attacks motor neurones in the body, which eventually leads to wasting of the muscles, making it progressively harder to move limbs and causes difficulty with swallowing and breathing.
For Mr Ladyman, getting dressed or ready for bed takes an hour with the help of two people.
"I can't even scratch the back of my head."
This Sunday he will be rolling around the waterfront with five other MND sufferers and about 20 support crew in the Armstrong Motor Group 10 kilometre race.
The team is aiming to raise $10,000 for the Motor Neurone Disease Association through the Givealittle website.
WHAT IS MOTOR NEURONE DISEASE?
■ It is a rapidly progressive disease that attacks the motor neurones.
■ Muscles get weaker and waste away, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing.
■ The cause is unknown and there is no cure.
■ About 300 New Zealanders have MND and up to 100 people die of it each year.
■ Men are affected more often than women.
■ Most people are diagnosed over the age of 40, with the highest incidence occurring between the ages of 50 and 70.
- The Dominion Post
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