Every week in New Zealand, two people are diagnosed with motor neurone disease and two people die from it, Motor Neurone Disease New Zealand chief executive Mark Leggett said.
MND NZ is a charity supporting people living with the disease.
MND is a neurological condition that attacks the nerves controlling movement, meaning the muscles that help people to move, speak, breathe and swallow stop working, the charity said.
The disease is progressive, which means it gets worse over time. There is no cure.
Casey-MacDuff hopes sharing her family’s experience will help raise awareness of a condition many people still know little about.
Friends knew Myles as generous to a fault. Full of banter and quick with a joke, he loved bringing people together.
“He was loyal and protective of everyone that he loved,” Casey-MacDuff said.
The MacDuff Family.
Devoted dad, loyal mate
Raised in Ngātea, Myles had a strong connection to the Hauraki Plains and wider Waikato community.
Rugby was a major part of his life, both in New Zealand and overseas, where he played in England and Wales.
Off the field, he built a career as a builder and took pride in his physical strength.
“He was strong as an ox,” Casey-MacDuff said.
The diagnosis that changed everything
When that strength slowly started to fade, it was one of the first signs that something was wrong.
Though at first, the changes seemed small.
Myles’ grip strength began to weaken. He started having unexplained falls.
Activities he once enjoyed, like taking the children swimming in the surf, became more difficult.
“We’d go for walks, and he’d fall over and not be able to save himself,” Casey-MacDuff said.
Myles MacDuff died of motor neurone disease in 2024.
“At the time, none of it really made sense.”
Looking back, she believes there had been warning signs for years.
Myles had experienced numerous knocks and concussions during his rugby career, and some of the changes in his physical ability were initially easy to explain away.
Like many men, he just kept going, Casey-MacDuff said.
The moment that convinced him something was seriously wrong came while he was working.
The builder who had spent decades lifting heavy materials found himself unable to carry a fence post down a driveway.
“We knew he was in serious trouble then.”
Robbed of physical strength
Casey-MacDuff still remembers the shock after her husband received the MND diagnosis.
“From that moment, nothing was ever the same again.”
The diagnosis left the family reeling.
“I thought I’d forgotten my car at work,” she said.
“But when we got home, it was already in the driveway. That’s how much shock I was in.”
The disease gradually robbed Myles of the physical strength that had defined much of his life.
Yet Casey-MacDuff said he never lost his sense of humour.
“He protected us, really. He didn’t complain much. He had a dark sense of humour and carried that all the way through.”
Helen Casey-MacDuff hopes sharing her family’s experience will help raise awareness of a condition many people still know little about. Photo / Tom Eley
He was home
The family returned to Ngātea during the final years of his life, the place he had always considered home.
In what Casey-MacDuff describes as a string of luck, the family found a house very close to two of Myles’ closest friends.
“We found a house to buy in between Myles’ groomsmen, basically on the same street,” she said.
At a time when life felt increasingly uncertain, the move provided something invaluable: a community of lifelong friends within walking distance.
“I don’t know who was looking after us, but somehow it all fell into place.
“Coming home was one of the best things that could have happened.
“He was where he wanted to be.”
Myles died two-and-a-half years after his diagnosis, leaving behind Casey-MacDuff and their two children.
A chance for support
June is MND Action Month and Bunnings hardware stores around New Zealand are hosting community barbecues in support of MND NZ on June 6.
Leggett said fundraising events like this helped ensure people affected by the disease did not face it alone.
“Motor neurone disease is debilitating and progressive,” Leggett said.
“It gradually strips away a person’s ability to walk, talk, eat and eventually breathe.
“MND Action Month … [is] a time to bring this disease into sharper national focus. It’s about taking action, creating awareness, and rallying support.”
Bunnings New Zealand general manager Melissa Haines said the business was proud to support the work of MND NZ.
“Our sausage sizzles are a simple but powerful way for us to bring communities together in support of meaningful causes,” said Haines.
Tom Eley is a multimedia journalist at the Waikato Herald. Before he joined the Hamilton-based team, he worked for the Weekend Sun and Sunlive. He previously worked as a journalist at Black Press Media in Canada and won a fellowship with the Vancouver Sun.