Brent Thompson with his support team while flying his custom-built model plane: wife Jess (left), daughter Isabel and son Cameron at Windsport Park in Ferrymead. Photo / George Heard
It’s a diagnosis that no one wants to hear, one from which there is no escape. Michael Botur meets Kiwis living with incurable motor neurone disease who are making every day count.
Brent Thompson can’t walk, talk or lift a finger but he can fly a model plane.
Thompson, 47, has been head-to-toe paralysed for the past nine years after receiving the devastating diagnosis of amyotrophic lateral sclerosis (ALS), a type of motor neurone disease (MND).
The disease began to damage the neurons in his brain which control his muscles in 2012 and over the course of four years stopped nearly every part of his body from moving.
“I can’t walk, talk, lift a finger or even breathe without the support of a machine,” Thompson says. “I received one of the worst diagnoses that anyone could receive.”
Thompson told his story to the Herald on Sunday with his eyes, using an eye-tracking technology called Eyegaze to command a computer to do all the things we take for granted - type, scroll, email, internet banking or communicate with his wife Jess and their children Isabel, 12, and Cameron, 3.
Thompson also needs technology to speak, and uses a voice synthesiser with the same robotic accent astrophysicist Professor Stephen Hawking had for 30 years.
As MND shuts down muscles, it eventually leaves most patients without the ability to speak clearly. Swallowing and breathing become life-threateningly difficult. Patients are left with an unpredictable lifespan, and only 5 to 10% of patients live for more than 10 years after diagnosis. While Hawking – diagnosed with ALS at age 21 – lived until 76, baseballer Lou Gehrig, diagnosed at age 36, died at 37.
Thompson, who lives in Christchurch, shared a breathtaking video telling the story of how he went from running a business manufacturing aeroplane propellers and preparing to build his dream home to losing all independence.
“At the time of diagnosis, flying was my main hobby,” Thompson says.
“My wife and I had just had our first child. The diagnosis was life-shattering … For the next few years, virtually every month involved some loss of mobility and freedom.”
In the first months after his diagnosis, Thompson had what he calls “a brief battle” with the Civil Aviation Authority (CAA) before they allowed him to continue flying – with a raft of restrictions, and monthly reviews. That brief respite allowed him to fulfil his dream of competing in the National Aerobatic Championships, before what he calls “the inevitable decline”.
Intent on keeping his love of aviation alive, Thompson refused to give up. Jess and friends rallied around and now, with their help, he can still build and fly model planes.
Northland friend Terry Johnson matched sensors with Thompson’s feet and hooked them up to software and hardware to communicate with a model plane’s radio control equipment. They are calibrated to sense tiny movements from Thompson’s toes, waist and head.
The result – dubbed Aerotoe – has been liberating. The project has given Thompson a way to build planes again, using his eye-controlled Grid Pad computer to design and 3D print his own RC planes which friend Barry Twigley, of Christchurch, assembles for him and helps to make them fly.
“It’s been so transformative for Brent,” Johnson says. “He’s able to reconnect with the world in a way he hadn’t thought possible.”
Thompson has now uploaded his first YouTube flying video in 11 years, reclaiming his identity as “Brent the Aviator”.
Another joy was the birth of their second child, Cameron, in 2022, “conceived the old-fashioned way”, as Thompson puts it.
“MND doesn’t affect sensation or sexual function,” he points out. “I think many people are surprised to learn that people paralysed by MND can continue to have active sex lives – but it’s not something we generally talk about!”
There’s probably no better person to sensitively probe the disease than Dr Natalie Gauld, who’s been leading the groundbreaking MND Insight Survey 2025.
Fit, healthy and with no family history, Gauld – a research adviser for Motor Neurone Disease New Zealand – spent her career in medical research and review before, at the age of 55, she was hit with a shock MND diagnosis three years ago.
“I’d noticed [in 2019] it was hard to get my kayak on top of my car,” Gauld says.
“I couldn’t believe how weak I was. But I didn’t think anything more of it.”
Little frustrations began to add up, Gauld recalls.
“I started getting muscle cramps. Over time those cramps got worse, got into different places. Then I had a fall when I was running. I put it down to age, but my elbow got infected.
“My doctor told me to go see a neurologist. Next, I had problems undoing a button and thought, ‘That’s weird.’ I googled ‘muscle cramps’ and ‘difficulty with buttons’ and it came up suggesting MND.”
After her diagnosis of slow-progressing ALS in March 2022, Gauld allowed herself a month of grieving with family.
“(I) then decided I wasn’t going to feel sorry for myself when I could be out having fun.
“Since then I’ve made the most of life. Today I’ve got a whole heap of work but I’m going to the top of Mt Eden with friends. Recently I had girlfriends take me away for a weekend in the Coromandel.
“It was lovely to be there and feel normal. Great laughs, great food, great company, walks on the beach. I can’t walk a huge amount but the longer I can, the longer I can go to the toilet by myself and be less of a burden for my family, the better.”
Gauld has also taken on various outdoor challenges to make sure she has no time to sit at home and mope. With the help of an electric three-wheeler called a Moton, designed by Auckland engineer Andrew Nash, she has ridden trails all over New Zealand with friends and family, including her husband Matt Rees-George and their two daughters.
On the second anniversary of her diagnosis Gauld rode the West Coast Wilderness Trail with Rees-George and three friends, a distance of 54km.
Since then, she’s knocked off a series of trails including the Whale Trail north of Kaikōura, the Mountains to the Sea trail, Alps to Ocean, Around the Mountains, the St James Trail near Hanmer Springs, Karangahake Gorge, Lake2Lake trail in the South Island, and trails in Australia.
“MND is a disease of loss,” Gauld says.
“You start with your hopes and dreams. It takes your money, then everything else. What you envisage for your future vanishes overnight.”
Beyond the most obvious downside – progressive paralysis – the fast onset of MND means patients often lose money selling their house in a hurry to try and move to a disability-friendly residence.
“People typically get just $8074 for house modification – an amount which hasn’t changed in 10 years,” Gauld says.
“[In the survey] we’re hearing from people who had enough money before their MND diagnosis; but then after, they have nothing. So there’s nothing spare to make time count.”
The MND Insight Survey aims to highlight what improvements are needed to help MND sufferers and their families, what’s working and what’s not in the time they have left.
One of Gauld’s favourite ways of making time count is going to stand-up comedy.
“The Classic Comedy Club have been so helpful. If you’ve got a friend in a wheelchair, take them out to stand-up comedy. No comedian will pick on you [if you’re with a disabled friend]. I consider myself a protector at comedy events!”
Craig Bushett of Whāngarei has lived with MND for the past 23 years, one of 400 New Zealanders who live with the disease at any one time.
His life comes with plenty of difficulties. Cologne and perfume affect his breathing, Covid almost killed him, every meal is liquid, pumped through a stomach port, and speech is difficult.
Yet the 52-year-old maintains a healthy attitude. Sporting earrings and tattoos, he controls his $40,000 wheelchair with his feet, regularly going on outings on his own.
A strapping father of five, married and divorced three times, Bushett now needs a caregiver to do everything for him. He can’t shake hands so tapping your foot against his is a typical greeting.
“Just scratching your eyebrow, things we take for granted, you need someone else to do them for you when you have MND,” says caregiver Adrienne Baker. Baker has seen Bushett struggle through progressive movement-loss across the nine years she’s been caring for him.
“Keep (up) the struggle is my advice for anyone adjusting to MND,” she says.
Bushett, who didn’t think he would live for his daughter’s 21st, let alone having three grandchildren, loves to get out of his Tikipunga house and ride his deluxe wheelchair down through Whangarei to the city’s scenic Town Basin marina, all controlled by a few nudges of his head and feet.
Whether it’s being taken out on occasional fishing trips or doing his 14 km round trip around town driven by little more than his toes, Bushett is not ready to give up.
“You make the most of a bad situation.”
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