Mother of all Battles

When Peter Malcouronne’s mother died of motor neurone disease six months ago, she was convinced her illness was one of a “cluster” of cases caused by the painted apple moth spray in West Auckland. He describes her last battle and his search for the figures that could finally confirm or dispel his mother’s suspicions.

In the end, I guess, my mother needed someone to blame for her death. Ravaged by motor neurone disease, she went from being the healthy, headstrong battler I’d loved and fought with for 34 years — the mum who once memorably proclaimed herself ‘A mother to be feared and revered’ — to a withered, crippled old woman. She couldn’t walk without the help of a walker. She had trouble breathing. She could hardly eat. She had to be lifted into bed.

The destruction of Vivien Shapcott took just six short months. No one thought she’d succumb so quickly. Though just 5ft 2in, my mother was a formidable woman — the Blonde Bomber — and her bullishness would fill a room. She was a fighter, she’d bow to no-one; she even took on fights that were not, strictly speaking, her own.

Like the infamous Sandal Wars. Last year, the board of trustees at Kelston Girls’ High School decreed that sandals would no longer be part of the school uniform. Mum, a special needs teacher and also seventh-form dean at the school, took a pro-sandals stand. The board buckled.

A few months ago, she took them on again over plans to change the school’s name to Kelston College for Girls. Too weak to type, Mum dictated her disdain. The proposed change was, she said, pretentious and un­necessary. “This is not Rem­uera,” she raged. “This is West Auckland!” Mum lost a narrow points decision this time — the school is now called Kelston Girls’ College.

Now my mother circled the wagons for one great battle. She became convinced that her illness was caused by Foray 48B, the painted apple moth spray that’d rained down from West Auckland skies 47 times between 2002 and 2004. She’d heard stories of a cluster of motor neurone cases in West Auckland, stories that enraged her. She vowed to fight those responsible. She conspired with activists, met Mayor Bob Harvey, bailed up local MP Chris Carter at an eco-fair and even appeared on television. Her last months disappeared into a furious storm of clusters, chemicals and rates of incidence. She took on this fight the way she’d always taken on fights: wholly, totally and with a force and fury that consumed all those around her.

I have written this story, or at least a similar story before, in the pages of this magazine. My father died of prostate cancer in 2000 after a long, painful two­-year struggle. It’s a beat I’d rather not be covering. But I promised my mother that I would continue her fight, that I would research this supposed cluster, sift through the anecdotal evidence and try to find out, authoritatively, how many people have motor neurone disease in West Auckland. Incredibly, disgracefully, no-one seemed to know.

The story starts a year ago: three days before Christ­mas 2004. Mum called a family meeting at her Henderson home. My two youngest brothers, Matthew, then 20, and Alex, 15, were already at home, possibly playing Counter-Strike, and had no idea anything was wrong until they saw the distress on my mother’s face as she walked up the drive towards us.

Until 2004, my mother had enjoyed pretty good health. But towards the end of that year she’d started feeling tired. Really tired. She’d also noticed weakness and tingling in her right arm, something she attributed to stress or RSI. She was given an arm brace that didn’t seem to help much, but she wasn’t too bothered. The Christmas holidays were just around the corner, time in her words, to “recharge the batteries”.

But by December Mum was having trouble walking up hills. She had difficulty unscrewing jars and was missing the odd note when she played the church organ.

She was unable to blow up a balloon at a kids’ birthday party. She also had strange muscle twitches in her legs.

Reassuringly, there was a likely culprit: a campylobacter infection she’d picked up eating some half-cooked chicken. It seemed she had post-infectious inflammatory neuropathy, which sounded dastardly, but was only temporary. To confirm this diagnosis a neurologist arranged for my mother to have an MRI scan, lumbar puncture and electromyography (EMG) test. All fairly routine.

Then she went into Auckland Hospital to get the results. The neurologist said: “I wish I could tell you that you had cancer of spine. You have motor neurone disease.”

Now my poor sob-racked mother was trying to break this news to her four sons. In her hand, scrunched up, she held several MND brochures. I’d later read through them, read that MND is an invariably fatal paralytic disorder caused by the destruction of motor neurones in the motor cortex, brain stem and spinal cord. These control the muscles that enable us to move around, speak, breathe and swallow: with no nerves to activate these muscles, they gradually weaken and waste. I’d learn that motor neurone disease is actually an umbrella term for several diseases, the most common form of which — in around 70 per cent of cases, including my mother’s — is something called Amyotrophic Lateral Sclerosis (ALS). The unwieldy moniker is revealing. Amyotrophic is derived from classical Greek: “A” is no, “myo”, muscle, and “trophic”, nourishment. No muscle nourishment.

Mao Zedong died of motor neurone disease. So did actor David Niven, bluesman Leadbelly, jazzman Charles Mingus, and Lou Gehrig, the famous New York Yankees first baseman, who died in the late 1930s (MND is also known as Lou Gehrig’s Disease in the US).

Lou Gehrig’s 276-word farewell speech to fans at Yankee Stadium following his ALS diagnosis has been likened in power and simplicity to Lincoln’s Gettysburg Address. “For the past two weeks you’ve been reading about a bad break I’ve got,” said Gehrig. “Yet today I consider myself the luckiest man on the face of the earth.”

But perhaps the most celebrated MND case is the physicist Stephen Hawking. In a sense he represents the ultimate expression of the disease: his body has dissolved, the muscles wasted away, leaving a brain trapped in a useless shell. (Until recently it was thought MND did not affect intellect, memory or the senses though new research suggests half of all MND patients suffer some cognitive degen­eration.) But in all other respects, Hawking’s experience is atypical: diagnosed in 1953 when he was in his early 20s, Hawking was unusually young. He’s also the longest-known MND survivor, having lived with the disease for 42 years. Since the average lifespan of a newly diagnosed MND patient is just 14 months, this is an astonishing achievement.

More commonly, MND follows a predictable and savage path. “If you were to design the worst possible disease it would be motor neurone disease,” says Australian neurologist Professor Dominic Rowe. “Your muscles don’t work, you can’t move, you can’t swallow, you can’t talk, eventually you can’t breathe and you die.” Yale University’s Department of Neurology is just as blunt: “The course of ALS is one of relentless progression and spread… Death from ALS results from weakness of respiratory muscles. When patients reach the stage where they can no longer breathe on their own, they are faced with the choice of either indefinite mechanical ventilation or imminent death.”

There is a perception that MND is incredibly rare, a “one in a million” condition. But while its prevalence is quite low — between five and seven people per 100,000 — its incidence, the number of new cases added in a year, is relatively high: between 1.45 and 2.7 per 100,000. MND patients don’t tend to last long.

Perhaps 100 New Zealanders die each year from the disease though no-one knows for sure. There are no reliable stats. While the Motor Neurone Disease Association (MNDA) collects information on people with MND, they concede that “not everybody diagnosed with MND is aware of, or referred to us, and indeed, some people choose not to receive this support”. MNDA national executive officer Sue Leader says that they work with between 160 and 180 people per year, though she estimates the total number of MND patients nationally at between 250 and 300. Because MND is not a notifiable disease, there is no national MND register. Leader says her estimate is based on international etiological data: “There’ve been no particular studies in New Zealand.”

Theoretical physicist and cosmologist Stephen Hawking was diagnosed with motor neurone disease in 1963. A record MND outlier, he lived for another 55 years until his death in 2018. The average life expectancy is under three years: only a handful of MND sufferers survive a decade.

Those first few days were a surreal time. We had our traditional family Christmas which I filmed for the first time, something that incensed my mother. “Put the bloody camera away,” she snapped. “I’m not some bally monkey at the zoo.” But a few days later she was performing: on New Year’s Eve, Mum fulfilled a lifelong dream of dancing the can-can on the kitchen table. Soon after, my youngest brother and I both had our birthdays. These were unbearably sad occasions, though we all pretended we were having a great time.

This would become her mantra, something she’d grimly hold on to in spite of all evidence to the contrary. I did my best for her. I spent weeks on the net, navigating my way through shameless quackery — quantum boosters, pubic hair core samples etc— trying to find out more about this disease. I came across the website of Jarrod Cunningham, the 35-year-old former All Black trialist who’d been diagnosed with MND in 2002 while playing rugby professionally in England. Cunningham takes a holistic approach to his illness that he says is based on Chinese Chi philosophy. He exercises heavily, training six days a week on a Power Glide machine that works his body’s muscles. Then he has massage and acupuncture three times a week. “Exercise is vital,” he told me by email. “There is a saying: ‘If you don’t use it, you lose it.’ This applies to your brain, mind and muscles.”

There are ropey aspects to this — Cunningham sends out daily motivational messages from the likes of Anthony Robbins (“The path to success is to take massive, determined action,” etc) — but his approach to regenerating muscles made sense to me. If you can strengthen part of a muscle surely you can compensate, at least for a time, for the other weakening parts of the muscle. The so-called experts think otherwise. “There’s a misapprehension about what’s going on,” the MNDA’s Sue Leader told me. “It’s not the muscle dying — it’s the motor neurones that cease to communicate to them. That’s why they atrophy. It’s not the muscle per se.”

For his part, Cunningham has nothing to do with the Association. “The MNDA, here and in the UK, have no idea how to help people with ALS,” he says. “Giving someone a wheelchair doesn’t help — it programmes their mind to give up and their body to shut down.”

My mother was more attuned to Cunningham’s philosophy. And so I encouraged her to start an intensive exercise programme — water-walking, exercycling, weights, even Pilates. But Mum was finding it difficult just to climb into the shower. The disease was there for all to see: you could watch the fasciculations — muscle twitches — in her calves and arms from across a room. This sensation would stop her from sleeping and also caused her considerable psychological anguish. She could never forget, for more than the briefest moment, that she had MND.

Nor could we forget. MND seemed to be in the news all the time. In late January, the case of Andrew Morris, the 39-year-old Hamilton man who wanted to starve himself to death, featured on Close Up. Mum tuned in and watched this poor man, ravaged by MND, lurch around with his walker, and try, unintelligibly, to talk. “As soon as I was diagnosed, I was a walking dead man,” Morris, via his caregiver, told the Herald. “There’s no sense in putting everyone though more suffering.”

Then we heard about a possible MND cluster in Nelson, where seven port workers had recently died from the disease.The fumigant methyl bromide seemed to be a common factor, despite a study conducted by Ed Kiddle, Nelson medical officer of health, arguing that the deaths were due to chance.

In March, Close Up ran a more positive story. Willie Terpstra, a bubbly 64-year-old woman from Rotorua, was off to China for an olfactory ensheathing cell operation: cells from aborted foetuses were to be injected directly into her brain. Some initial results verged on miraculous: those who couldn’t walk were said to walk again, those who couldn’t talk, talked once more.

Mum later met Willie and, inspired, decided that she, too, was going to go to China. I was tasked with finding out more about the procedure. What I learnt wasn’t encouraging: the maverick surgeon Dr Huang Hongyun offered no follow-up care, didn’t track his patients’ progress and his work hadn’t been peer reviewed. There was no double-blind study, and his contact email address — — hardly filled one with confidence. I kept most of this information to myself, not wanting to ruin my mother’s Chinese dream. She was so sick by then she couldn’t have travelled anyway.

When Mum was diagnosed, she’d been given a life expectancy of one to five years, but it was becoming clear that she’d struggle to survive a year. Her form of the disease was particularly aggressive. It usually starts in the legs or arms and spreads from there, but my mother’s MND attacked her torso. Her back and chest muscles wasted away and she couldn’t hold herself up, even when she was strapped inside a corset. Her diaphragm was weak — she had trouble breathing — and her ribs kept popping out. She couldn’t sleep. And yet, in spite of all the evidence, Mum pressed on as if things were normal. She got an electric wheelchair and a special microphone so she could continue teaching. When she couldn’t walk to the toilet without exhausting herself, she decided to lead a party of 30 to Tiritiri Matangi, the bird sanctuary island where she’d worked as a volunteer guide. This was stubborn, brave, almost heroic, but it was also delusional. Her disease was relentless — every day she was weaker than the day before — yet no-one seemed to know what to do. I decided to write her a letter.

“Our family is in crisis,” I wrote. “We need a plan because without one your life, and ours too, is being ruled by your illness. It is the last thing I think of before I go to sleep each night and the first thing I think of when I wake. Of course, my pain and sorrow is in no way comparable to yours, but this feeling of impotence, of being unable to do anything to help you or slow the progression of this disease, is overwhelming.” I tossed out a few Nike slogans, told her how we had to regroup, fight this as a family. I talked about taking her to Gisborne where she’d never been, and getting The Office and the musical Les Miserables out on DVD (someone had told me that comedy and music are the last pleasures of the dying). I even dared mention the hospice.

It was probably as well that I didn’t send the letter.

As hopes of a miraculous cure faded, my mother’s attention turned elsewhere. Her new enemy: the painted apple moth spray, Foray 48B. Like many West Aucklanders, Mum had reacted badly to the spray, suffering from asthma-like symptoms, nausea and diarrhoea after each spray run. Now she became convinced it was the cause of her illness.

Her suspicions were fuelled by rumours of other people with MND who lived nearby. The young man in his thirties who lived a couple of hundred metres from my mother on Henderson Valley Road. The friend of a friend who lived a couple of kilometres away in Oratia. The two parents from Swanson School who’d been diagnosed in the last 18 months. The friend of Mum’s home-helper. The speech therapist who came round to help my mother with her dysarthria (slurred speech from weakened throat muscles) said that she had “about 10” MND patients out West. “I’d never had more than one at a time,” she said, shrugging. “It’s weird.” Then a nurse from West Auckland Hospice told Mum that they had “six or seven” MND patients on their books — many more than they’d had before.

Hana Blackmore, a 61-year-old self-described “independent community health researcher”, had also heard the rumours. Blackmore heard from a friend of a health professional caring for a recently diagnosed patient that there’d been “some sort of a statistical paper” published about a cluster of MND in West Auckland — a paper that “horrified” her. “It showed that, up to Christmas [2003], 25 new cases have been diagnosed in West Auckland alone,” Blackmore says. “As the generally accepted [incidence] figures for MND are 1–2 per 100,000, this is either a horrendous misquote — or we have a disaster on our hands.” Blackmore couldn’t confirm this story — and nor, when I looked into it further, could I. But it added to the anecdotal “evidence” that seemed to be all around us. It was almost the proof that my mother sought.

You have to be careful when trying to make a causative association between an event, such as the PAM spraying, and a possible outcome — a surge in MND cases. But though medical professionals don’t know what causes MND, environmental exposures and stressors are believed to be at least partly responsible. And Mum (with me cast as her researcher) was now schooling herself on historical cases where an increased incidence of the disease coincided with prolonged chemical exposure. One study we latched onto, published in the prestigious journal Neurology, found that veterans from the first Gulf War, who may have been exposed to sarin gas, were three times more likely to develop MND.

Then in early March, my mother was passed a purported copy of the manufacturer’s instructions for Foray 48B by the woman who did her eyebrows — who, it turned out, had been handed it by a friend who worked at the wharf where Foray 48B was unloaded. These instructions were stuck to the side of the 1000-litre vats of the spray. The Government refused to tell West Aucklanders what was in the spray — that was commercially sensitive information the American manufacturer didn’t wish to share — but reassured the public we had nothing to worry about. It was with mounting fury that my mother read aloud to me the instructions inside the document:

🔴“Keep unprotected persons out of the treated areas until sprays have dried.”
🔴 “Do not apply this product in a way that will contact workers or other persons, either directly or through drift.”
🔴 “Only protected handlers may be in the area during application.”
🔴 “Do not enter or allow worker entry into treated area during the restricted entry interval (REI) of 4 hours.”

“It’s disgusting what they’ve done to us,” Mum raged. When she filled out a medical insurance form in April, she put in “painted apple moth spray” as the “cause” of her illness. And when a well-meaning soul repeated the official line that the spray was a naturally occurring organic spray, she sneered: “Yeah, natural and organic all right. Just like anthrax!”

My mother was now on the warpath. She’d be the public face of the campaign to ensure that MAF never sprayed again. She would bring the Government down. In June, Mum appeared on TVNZ’s Sunday programme where she vowed to stop the spray plane from taking off: “The bastards will have to scrape me off the runway.”

“Did they have to use that bit?” she grimaced as we sat watching the telly together, she in her modified La-Z-Boy chair provided by the MNDA.

I have kept a bunch of my mother’s phone messages. Every 10 days I have to re-save them. Some are typically forthright: “How do you ever expect to get a girlfriend when you write rubbish like that?” she says in response to what I considered the definitive article on bachelor theory. Some are merely mundane: “We’re taking Grandad out to Valentine’s. Would you like to come?” or “There’s a shirt sale on at Hallensteins. Two collared shirts for $40!” Her last message, received on July 11, says simply: “Pete. It’s Mum. Give me a buzz.” She was calling from Waitakere Hospital.

Now I listen to this last message again. My mother’s voice is croaky. She gasps for air. Three days earlier she’d been admitted to hospital with severe breathing problems. She was unable to walk and could barely stand.

Even so, I didn’t think it was the end. She’d been put onto oxygen and things seemed to be improving that evening. After I’d polish­ed off her pudding, we went for a walk along the hospital’s mile-long corridors. I asked her how she’d met my father, her first husband, and she told me, barely audibly, for the first time. Apparently some guy fancied her, but he was stuck with another woman, so he enlisted my father to drag Mum along to a dinner as a sort of fall guy. Unfortunately for the cunning Lothario, Mum and Dad fell for each other.

When I remarked that the usurper would never have been a match for my father’s roguishness, Mum rolled her eyes, shook her head, cranked her motorised wheelchair up to full power and took off at 8.4km/h, leaving me in the dust. Good old Mum. We’d have her back home tomorrow.

Mum died the next morning, July 12, eight hours after she left her last message. She was 56.

Before she died, I promised my mother that I’d keep the fight going — that I’d investigate the mystery of the West Auckland cluster. In the months following, I found myself becoming as angry as she had been. How could the authorities blithely dismiss the possibility of a cluster while admitting they had no idea how many people had MND? Small wonder rumours and conspiracy theories were swirling.

In February 2005, Hana Blackmore and Waitakere Healthlink rep Meredith Youngson met Auckland Regional Public Health Service representatives and requested a cluster investigation. They heard nothing back for six months. Blackmore complained to the Office of the Ombudsmen who replied, on July 12, (coincidentally the day my mother died) that the service “had been in touch with both Ms Blackmore and a neurologist working with the regional neurology service. It appears that no increased incidence of MND has come to the service’s attention”.

But Blackmore hadn’t been contacted by Auckland Public Health. I asked Dr Virginia Hope, medical officer of health for the ARPHS, to explain how the possibility of a cluster had been discounted: “A former medical officer of health from ARPHS [David Sinclair] made some enquiries early this year and I believe the opinion given to him by a neurologist indicated there was no awareness of a change in the rate of MND diagnosis in West Auckland,” she wrote back. “The Motor Neurone Disease Association have also indicated to me earlier in the year that they are not aware of any sudden changes in rate in Auckland.”

I pressed the issue of a West Auckland cluster with the association’s Sue Leader and received a blunt reply: “There isn’t one.” She was even more emphatic when I asked her about a possible link between the PAM spray and MND. “There is no link. There is no link. There is no link.”

But how could the MNDA say this with any certainty without knowing how many people in West Auckland had the disease? Surely the only way to establish, or to dismiss, a cluster is to work out what the numbers are and compare them to what you might expect them to be. Unsatisfied, I contacted Dr Alison Charleston, head of the MND clinic at Auckland Hospital. I’d first met Charleston, a kind and open­-minded woman, a fortnight after my mother’s diagnosis. Just days before this story was filed, she finished compiling a database of MND patients in the greater Auckland area, a task which took her six months and had to be done in her own time. (Charleston has just two hours a week set aside for MND work.)

“I’m the only person who’d have any idea what the numbers are,” she told me. She acknowledged that concern about the supposed cluster had been a factor in her compiling the database. “I’m very aware that there’s been a lot of hype about this and people are very, very anxious,” she said. “If I look at the data and the incidence of new cases of motor neurone disease, then there’s no evidence whatsoever of any sudden increase in the number of motor neurone disease patients, either overall or in any particular geographic area. To the best of my knowledge, there is no need for alarm.”

The number of Aucklanders who suffer from MND varies from year to year, but at any one time, there are between 70 and 80 cases. “That’s about what you’d expect for a population of a million,” Charleston explained.West Auckland, with a population of 189,000 in 2004, could expect to have about a fifth of these cases. According to Charleston’s figures, there are 16.

In other words, there isn’t, and never was, a cluster. So why do people think there is? “I think it’s been a bit like Chinese whispers,” Charleston says. “It started as a sort of rumour and it grew. The first I heard of people were talking of an extra two or three cases. By the end of it, I was being told that there were 28 new cases. And this happened over a period of about six months.”

And the alarming “report” which announced 25 new cases? “That’s absolutely untrue. That is bunk.”

Now four months after my mother died, hardly an hour passes without me thinking about her last night at home. Terrified about choking to death, she asked me to stay the night with her. I put a mattress on her bedroom floor and tried to sleep. Part of me wanted the night to last forever, for Mum to somehow hang on and stay here with me, for me, just as she always had. Part of me yearned for morning. While I was exhausted, I knew I wouldn’t sleep. I got up and watched my mother, her tired face lit by the bedside lamp she insisted leaving on, listened to her breathe — an “ah­ ah-ah-ah” rasp — and wondered how things could possibly get worse. And then I remembered a nurse telling me that sometimes MND patients cease moving altogether, that at the end they’d lie there on a bed, able only to blink. We still had some way to go.

Suddenly I was angry with her. Really pissed off. I was sick of hearing about her bloody illness — I wish she had the stoicism of my father, who hid his pain from us and confided only to his journal.

And yet since my mother had no partner, no one to hold her close at night, and because she’d stubbornly, stupidly refused hospice care, the burden fell to her sons. My 16-year-old brother, Alex, left school to look after her. It’d be up to us to wash her with a flannel each morning, dress her, gently raise her arm to roll on some deodorant, heat the wheatie bags for her dislocated ribs, try and force her to swallow the liquid meals she hated, help her to the loo five times a night, then lift her back into bed, all the while listening to her tell us how things should be done.

I was angry, too, about her painted apple moth campaign that I felt had consumed her last reserves of energy.

Now I’m more accepting. Now I think, well, I never found the information she hoped for, never took the authorities down, but I did get her some kind of justice. There may not be a cluster of MND in West Auckland, but because of the agitation of people like my mother, we now know how many people in this city actually have the disease. Its public profile has been raised. And Dr Charleston’s database may help researchers understand more about it. It’s something.

But watching her at home that night, I just wanted it all to be over. I also wanted time to stop.

The whole situation was a shambles. Just a few nights earlier, Mum got me to type up her school reports. She’d dictate the comments for each girl — there were about 70, as I recall — along with a potted biography. Sometimes her dictates were critical, but then she’d tell me to chop out the harsh comments because the girl in question might get a hiding from her parents if she brought home a bad report. It took us several hours,and I couldn’t help feeling that there were other things my mother could have been spending time on.

Two weeks after her death, I went to the school’s memorial service. The hall was packed with girls, some absolutely bereft. Two of her students spoke. One told of how she’d been a bad kid, off the rails, who hated school. But Mum, she said, had been like a mother to her. It was thanks to “Mrs Shapcott” that she was now in one of the top classes. Listening to this girl’s tearful speech, I felt I understood my mother, her mad campaigns and misplaced priorities, a little better. And I felt proud.

First published in Metro, January 2006.

🔴 2018 POSTSCRIPT: A year after Vivien Shapcott’s death in July 2005, her older brother, Jeremy Lowe, was diagnosed with motor neurone disease. Jeremy — Uncle Jeremy — went on a BiPAP breathing machine and lived far longer than Mum, dying in July 2008. Were their illnesses coincidence, or could there have been a connection? While most motor neurone cases are sporadic with no clearly identifiable cause, an estimated 10 per cent are familial or inherited.

However, scientists suspect the seemingly random form of MND is likely caused by a host of subtle genetic and environmental influences that might ‘tip the balance’ and cause MND. Chemical exposure and pesticides remain right at the top of the list of probably triggers. It’s worth noting Uncle Jeremy lived with my mum through the painted apple moth spray programme and also experienced asthma-like symptoms and breathing difficulties.

A decade later, the 2014 Ice Bucket Challenge would bring considerable publicity to a disease that kills nearly one in 200 New Zealanders. Our motor neurone disease incidence is the highest in the world — twice the international average. Meanwhile, in a move that would’ve greatly pleased my mother, New Zealand now has an MND Registry.