David Seymour, who has motor neurone disease, strongly supported euthanasia alongside his namesake in 2017, thinking that he would want it for himself. He now has a new lease on life, partly thanks to his newfound obsession with collecting model cars. Video / NZ Herald
David Seymour helped his MP namesake to campaign for assisted dying in NZ. Now that it’s legal, dying is the last thing on his mind, writes Isaac Davison
It started with a little trip on the stairs.
Known as drop foot, the subtle symptom was the first sign that David Seymour’s comfortable life was about to change forever.
Drop foot isn’t itself a disease, but it can be a hint of an underlying condition, sometimes a neurological one.
Seymour, a businessman from Whangārei, began to notice twitches in his legs, also called fasciculations. Inside his 52-year-old body, the links between his brain and his muscles were beginning to break down.
After a series of tests carried out over months, he was diagnosed with motor neurone disease (MND), a terminal condition with no cure.
The year he was diagnosed, the End of Life Choice Bill was pulled from the private member’s ballot. Already a strong believer in assisted dying, Seymour campaigned for the law change - leveraging on the fact that he shared the name of the bill’s sponsor, the Act Party leader. He even ran for Parliament on a single-issue platform.
Seymour envisaged that one day, as his body gave up, he would want to be able to choose death.
Yet a year after assisted dying was legalised, he has no intention of ending his life.
He has not made a U-turn, he said. He is thankful he has the choice of an assisted death. But of late, his improved quality of life had pushed the idea of dying into the distance.
Speaking to the Herald on Sunday in his room in Maygrove Village Hospital in Orewa, he detailed how he staves off the sense of doom which can pervade the lives of motor neurone patients.
David Seymour was diagnosed with MND in 2017, the same year that a law change to legalise assisted dying was pulled from the ballot. He went on to campaign for the law change alongside his MP namesake. Photo / Sylvie Whinray
In late 2017, Seymour was a high-flying real estate agent. He was ranked in the top 20 for sales at his company, LJ Hooker. He had a number plate which said LJH007 - a license to sell. He had built a new house in Whangārei where he lived with his wife, Rachel.
The diagnosis came without warning. Like 90 per cent of motor neurone patients, he did not inherit it.
Seymour managed to work for another six months. He began using a walking stick, then a walking frame. By mid-2018, he was using a manual wheelchair. The following year, he switched to an automatic wheelchair.
He hit a low point in 2020. The condition “destroyed” his marriage, he said.
“Rachel didn’t leave me because she didn’t love me any more,” he said. “She just couldn’t live with the demands required of her.
“I would have loved it if she had stayed. But the reality is, for her own sake, she was better off leaving.”
Their experience is not uncommon. Studies of the impact of motor neurone disease on relationships highlight that the role of a patient can change from a spouse to something more like a parent. As the patient’s condition deteriorates, partners can feel physical exhaustion, emotional distress and frustration.
“The level of care to do that at home was getting near impossible,” Seymour said.
He lost the use of his arms over the last two years and now moves his wheelchair using his head. Last year, as part of an awareness-raising campaign for MND, he started auctioning off items online that he could no longer use - starting with a fishing rod and hiking boots and then moving to everyday items like a knife and fork.
It takes two people to get him out of bed in the morning, using a sling, and get him to the bedroom. The sling is placed back on him to get him on to the bed to get dressed. The whole process takes an hour, and also takes place in reverse at the end of the day. At night, he sleeps on his back until 4am, then he is rolled on to his side, and rolled again at 6am. He needs someone to scratch his nose, or shift his legs if a toe curls under it.
Stressed and exhausted by his marriage breakdown in 2020, he felt that his condition was deteriorating. He ramped up his campaign for the End of Life Choice Bill, offering to run in the Whangārei seat for the Act Party.
“David Seymour to Stand in Whangārei,” said the press release, briefly baffling reporters who wondered why the Act leader was giving up on his Epsom seat. To confuse things further, the two men grew up on the same street in Maunu, Whangārei.
“I’m not the Act leader, but I am a strong advocate for End of Life Choice,” Seymour said in the press release.
“I’ve lived a full and active life, but I believe that when the time comes, I should have a choice about how I go. It’s my life and my choice.”
The other David Seymour: the Act leader teamed up with his namesake to campaign for assisted dying. Photo / Dean Purcell
The two David Seymours riffed on the confusion throughout the campaign.
“I can [neither] confirm nor deny that the party has a strategic reserve of David Seymours,” the Act leader told RNZ.
Seymour (the other one) did a creditable job in Whangārei, winning 2153 votes. He took pride in costing National MP Shane Reti the seat - Reti lost by just 431 votes.
At the general election, New Zealanders also voted overwhelmingly in favour of legalising assisted dying, and the law would come into force a year later.
As part of the negotiations to pass the legislation, the Act Party leader agreed to make the criteria for assisted dying stricter, adding a requirement that a person has a terminal illness likely to end their life within six months.
Seymour (not the MP) said he was unsure whether he would qualify for assisted dying, in particular the six-month test.
Ministry of Health figures show that of the 596 applications made for an assisted death up to September, just under 10 per cent were for neurological conditions.
One hurdle for people with debilitating illnesses is that New Zealand does not allow patients to give an advance directive specifying assisted dying. It means, in theory, that by the time a patient is sick enough to qualify for voluntary euthanasia, they may no longer be competent to give consent.
The ministry data also shows a relatively high rejection rate, which has prompted calls for a relaxing of the law when it is reviewed in 2024.
Seymour said that at this point in his life, his condition did not prompt thoughts of an assisted death.
“At the moment I’m not in pain and I’m still able to do quite a few things. I can’t get up and run around the block so to speak, but I can still enjoy a fair amount of things in life. I can still have a good conversation, drink beer and eat steak, you know? Having the ability to engage with others I think is the difference. If I was probably bed-bound in pain, I think the thought of the end-of-life choice would definitely be entertained.”
His change in outlook raises an important question about assisted dying. Is he concerned that he - or others - may have opted for death at a low point, not knowing that they might have better days ahead?
It does not bother him, he said. “It obviously wasn’t a confirmed decision [to get assisted dying]. No one had any idea of my life expectancy at the time. And whether I would have been eligible is another minefield as well.”
I asked David Seymour the MP the same question.
“It is always a concern,” he said. “But the question is, who should be able to assess that risk?
“To not allow assisted dying is to say nobody is allowed to make that up for themselves. To allow it is to give them their own choice. On balance, I think you get better outcomes for people if they each have their own choice.”
Motor neurons are responsible for the brain communicating with muscles to create movement. When someone has motor neurone disease, the brain gradually stops being able to send signals to these muscles, which then weaken and waste away.
The patient becomes progressively paralysed, can no longer do daily tasks like going to the toilet, and then loses their ability to speak and eventually breathe.
It is difficult to diagnose and even more complex to treat. Existing treatments do not arrest the progression of the disease or reverse weakness. They mostly focus on relieving symptoms, by easing muscle cramps or helping with swallowing.
There is one funded drug for MND in New Zealand, called Riluzole. It does not stop the disease but slows it slightly, and trials have shown that an MND patient who is given the drug early may survive for 30 to 40 per cent longer.
Using a ventilator at night can also slow the progression of the disease.
Auckland University motor neurone disease researcher Dr Emma Scotter studies cells grown from donated brains. Photo / Doug Sherring
Dr Emma Scotter, head of the Motor Neuron Disease Lab at the University of Auckland’s Centre for Brain Research, said there were some promising developments in genetic approaches to treating MND.
One of these involves injecting DNA into a patient’s spine to “dial down” the problematic genes associated with MND.
“The trials for that look really good,” Dr Scotter said. “Anecdotally, lots of clinicians are saying that people are plateauing, they’re not getting worse. They may stop people from losing function, which is incredible.”
MND patients usually live for between 20 and 48 months after their symptoms begin. Seymour is an outlier, having lived for six years. Just 5 to 10 per cent of patients live for a decade or more.
“Who would have thought we had enough gas in the tank to go this far?” Seymour said.
David Seymour's car collection at Maygrove Village Hospital spills out into the hallway. "They said make yourself at home," he said. Photo / Sylvie Whinray
He puts his longevity down to three things: high-quality, full-time care, engagement with friends, and an all-consuming hobby.
(The role of environmental factors in prolonging an MND patient’s life is not known - but scientists are studying outliers like Seymour to detect whether there is a genetic link.)
Seymour is able to afford around-the-clock care at Maygrove Hospital and gets support from Harbour Hospice.
His hobby is hard to miss. He is a Mustang enthusiast and began collecting model cars earlier in life but went into overdrive when he moved into the hospital.
Every wall is now filled with model Mustangs, oil cans, car club posters, knick-knacks, and his favourite obsession - memorabilia from the oil company Gulf. The collection has spread out into the hallway.
David Seymour's obsession is collecting memorabilia associated with the oil company Gulf. Photo / Sylvie Whinray
“They said make yourself at home,” he said. “One of the staff says I can’t go any further, but we’ll see.”
He added: “It gives me purpose.”
And that is how a man who lobbied for the right to die now wants to live, on and on.
“I’m really super calm within myself,” he said. “I’m at peace with myself and just learning to enjoy what I can every day. It’s all it is. It’s about enjoying the day. And I’ve got another box of goodies to unload shortly, too.”
