Play on, Neale: My battle with The Beast
NEALE Daniher has no time for sadness. His kids have never seen him angry at being diagnosed with such a terrible disease. He wants to use what time he has left doing something important - raising money to find a cure for the next generation afflicted with motor neurone disease. RUTH LAMPERD spent six months following the man who is so much more than footy royalty.
A FIRM handshake between country men uses a good 30 arm muscles. In the case of Neale Daniher, they were first toughened by roast lamb dinners and milking cows.
This farm-bred boy and a former footy star with big, strong hands had more than 50 years to hone his shake. He had a league of best mates to perfect it on.
“Hey Cam, good to see you,” Neale says as his cab pulls up to the Peppermint Grove picnic spot. Cam Taylor is a farmer in the West. The two friends and their wives are catching up for some coldies on the banks of Perth’s Swan River, three warm Christmas Eves ago.
Neale rises to his 190cm and thrusts out his hand. There it is — The Handshake.
Cam stirs Neale lightly. “Hey Nealo, what’s up with the handshake?”
“Mate, that’s the best I’ve got,” Neale retorts. The moment passes. The friends settle into drinks and yarns of footy and farming.
That time at Peppermint Grove doesn’t occur to Neale a few months later, as he fumbles the car keys. Nor when his fingers can’t fix the pegs to the clothesline.
It was only much later that Neale realised the handshake with Cam was the first hint of a bastard of a disease. That’s what scientists call it. The Bastard.
It takes a long time to diagnose motor neurone disease. There are scores of tests and scans.
Everything else is ruled out until it’s the one left standing. His doctors hoped like heck it was something less cruel — like a tumour on the spine, multiple sclerosis or HIV.
Neale drew The Bastard from the hat. But he’s not so special: two other people were diagnosed with MND in Australia on the same day. And two or three every day since.
He will be a helpless witness to his own demise. His body will fail; his mind will stay sharp. There is no cure and no treatment yet to slow this disease. A hideous medical riddle that will be solved one day, but most likely not in time for Neale.
“Anyway …” Neale tells Cam. He’s called him a few months after Peppermint Grove to explain his illness.
“No time for sadness. When’s the next round of golf?”
NEALE talks about dying because that’s not the hardest part of MND. His “shining a light on to the beast” is helpful for all the other MND patients yet to be diagnosed.
He discusses rarely the part between now and when it takes him, because, well, what’s the point in punishing yourself?
He doesn’t even like going to his specialist. He’s sitting in the waiting room. So what will the doctor tell you about treatment? He turns and looks with stern brown eyes. The question seems to make him irritable: “You have to understand — he can’t treat me. He can only manage my care. They are very different things.”
Neale hands over a disk to the receptionist. “What’s on here?” she asks. “I don’t know. I was just told to give it to the doctor,” he responds.
He is instructed to fill in the form for new patients. It annoys him — don’t they know writing with pen and paper for people like him is difficult? He does it anyway.
After, Neale gives his abbreviated rundown of the appointment with his neurologist.
Professor Richard Macdonell: “So how you going?”
Neale: “Good thanks.”
“And then I book in for six months later,” he says. “Really there’s nothing he can do. Going to a specialist puts MND in your face. I don’t like that.”
He is also yet to visit the main hospital that treats MND patients when they’re too ill to be cared for at home — Calvary’s Bethlehem facility in Caulfield. “That’s not on my agenda yet.”
Right now he can get around. He can walk and drive and eat and talk. But, gradually, things become more difficult.
“It’s harder to pick things up. Harder to do up buttons. In the early days I felt like I was a way away from any real problems,” he explains.
“But every day I’m closer and closer to not being independent. I’m not looking forward to that.”
THIS is the disease doctors least want. People survey graduates fresh from medical school and that’s what they say. (It’s no wonder Neale doesn’t want to dwell long on it.)
“I’d rather have a million other diseases than this one,” says Prof Macdonell. He doesn’t give Neale a prognosis, an expected end point. “All I can tell him is, ‘This will catch up with you at some stage’.”
Neale has also met Professor Brad Turner, a Melbourne-based researcher at the Florey Institute who has dedicated 14 years to finding a cure. That’s enough time for a person to be diagnosed and die from MND at best three — usually four, sometimes five — times over.
It panics Prof Turner sometimes, the speed it takes people. “It’s the most incapacitating disease of our species,” Prof Turner says.
Neale recommends him as a good interview, then jokes: “Don’t use up too much of his time. We don’t want to interrupt his work.”
Prof Turner is one of the clever people working around the world to find a cure. In Australia there’s limited money to fund the research especially as the disease cuts down otherwise healthy people way before their time. And it kills 100 per cent of people it hits.
It starts with odd twitches and weakness and ends too fast — with wheelchairs, feeding tubes, respirators and eye-gaze speech machines. Victims become immobile. They lose even the ability to smile.
The nerve cells that connect to their muscles break down and the brain can no longer tell them to move. Eventually you can’t breathe on your own. And soon after, it takes your life.
NEALE strides up to the Camberwell coffee shop table and throws forward his hand. It is the week before Christmas last year. Two full years since Cam ribbed him at Peppermint Grove. His hand still squeezes, but there’s a stiffness about his fingers — they don’t form a comfortable curl.
“I’m not really sure I want to do this. I don’t want anyone to suggest I’m a hero,” he says, initially uncertain then how far out he should cast himself in the MND battle.
He tears the top off a sugar sachet and tips it carefully into his coffee.
“While it isn’t impacting you, you get on with life,” Neale says. “I don’t know how quickly it will progress.” That afternoon he’s looking forward to a round of golf.
When he’s asked a question that makes him think too hard about the future, Neale looks away and shrugs. ‘Haven’t really thought about it,” he’ll offer. And you can tell he has no intention to.
There’s a vague slur in his speech. A softness to his consonants. A year earlier, before anybody knew, his old Assumption College schoolmates had caught up with him for drinks after a golf reunion.
There were a few quiet calls between them when they’d gone home, questions asked about whether Neale was all right, whether he might have had a couple too many beers before he turned up.
When Neale hears this, he’ll smile and say, “ha!”. And he’ll think: If only it was so simple.
FOOTBALL rarely leaves its better players without scars. What chopped Neale’s promising career short is embodied in four little white lines around both of his knees. Surgeon’s work from 30 years ago.
He did three knees, former Essendon teammate Simon Madden points out. But he didn’t complain. He was reported at the time by a newspaper as saying, “It’s not all that bad”.
This modest, clever player’s speed, skill and strong overhead marking made him a prototype for how the next generation of footballers were to look.
Neale played only 82 games. His brother, Terry, notched up 313. Since the 1980s, surgeons have new techniques to resurrect players after they’ve done an anterior cruciate ligament. He should have been born 30 years later.
If he was, he’d also have been diagnosed with MND in an era when it has a cure. Talking so optimistically is not considered unrealistic.
Professor of neurology at Sydney’s Macquarie University, Dominic Rowe, will be disappointed if good treatment is not found soon. He’s a frank speaker for a scientist.
“It’s about staring the bastard down. I look forward to the day I can say to the 46-year-old father who comes to see me looking for salvation and saying, ‘You don’t have to be scared of this — you won’t be dead in two years’.
“The sole purpose of our research is to make it go away. We want to be able to turn MND from a certain killer into a chronic, indolent pain in the arse.”
Neale’s legs are still strong. Sometimes when he’s on the couch he can see one of the muscles twitch, but other than that they’ve been spared so far. His golf game — which he claims was never that good — has started to fade. For a while it was only his right arm that was weakened. Handy for the left-hand golfer. Now his left arm is failing.
“I go out for a stroll, fresh air and some sun mostly now,” Neale smiles. His friends describe how a group of them got together last year and decided the loser would pay for lunch. Neale loses. He can’t resist: “Don’t they realise they’re playing someone with motor neurone disease?” He grins and pays anyway.
Neale Daniher's ice bucket challenge0:50
Tim Watson gives Neale Daniher a dose of the ice bucket challenge to raise awareness of motor neurone disease
That humour helps steel his friends. Footballer-turned-TV sports presenter Tim Watson is charged with tipping a bucket of ice over his head for the camera. They have a good laugh.
“I always knew he was tough — but now I’m seeing exactly how tough,” Watson says of Neale.
Some MND sufferers first have symptoms in their toes, the disease gradually working up their legs to their torso and neck.
Neale describes himself now as a musketeer, one of four board members for a foundation working to lift awareness of the disease and to raise money to fund research for treatment.
The Ice Bucket Challenge, which went viral on Facebook last year, was to raise money for MND — or ALS, as it’s known in the US. In Australia it raised $3 million. That is almost $1 million more than the Federal Government gives for research into MND.
Ian Davis was the founder of Cure for MND Foundation. Ian’s MND is working its way from his feet upwards, the opposite to Neale’s.
“We start out affected in different parts of our bodies,” Ian says. “But we’ll end up the same.”
MND is a rare disease only because people with it die so quickly. The same number of people who are diagnosed in one year will die from it. That is about 800 in Australia, and represents one in every 180 deaths.
With those grim statistics in mind, it is NOT a rare disease.
It exposes what Ian considers a flaw in the Federal Government’s medical research funding formula. From a $420 million pool, MND received $2 million this year.
Even though only slightly fewer people with MND are diagnosed annually than people diagnosed with multiple sclerosis, MS receives 10 times the Government research funding.
This is because new drugs now on the PBS increase their life expectancy so nicely — in comparison — that there are 10 times more people alive with MS than with MND.
Ian knows how quickly the philanthropic doors swing open when the C-word (cancer) is uttered. But more frustrating to him is the millions directed instead to preventable diseases. “A third of the total federal research budget is spent on what can be considered predominantly lifestyle diseases — diabetes, cardiovascular disease and obesity.”
“We need more money to beat this thing. And we’re way overdue for it.”
How MND works
Patrick Cunningham, one of the other musketeers, works closely with Neale and Ian. His wife, Angie, was a professional tennis player. She’s been hit hard. She can no longer talk and is now fed directly into her stomach through a tube.
Pat describes himself as a “crier”. It’s hard to see his wife, a dignified woman, suffer now with a disease that has taken so much from her. They have two little girls who brightly greet you at the door. The family tries not to dwell on all the “last times” they do things. But that’s what life is becoming now.
Still, Angie jokes through her tablet in her dining room, about experimenting with different electronic voices. She tried the Queen’s — for when she wanted to let everyone know she meant business — but discovered it wouldn’t let her swear.
Angie is at a lunch where Neale addresses an audience of 100 influential Cure for MND supporters two weeks ago. There’s the same inspirational language — the occasional well-placed f-bomb — he used as coach on nine years’ worth of Melbourne Football Club players. This beast of a disease deserves all the swear words you load into one sentence.
In March, Neale and Ian had an audience with music guru Molly Meldrum. By then he’d thrown himself firmly into some major fundraising events. Neale wants to put the time he has left to good use and to “have a bit of a laugh while I’m at it”.
MOLLY had his own brush with death a few years ago when he fell from a ladder on to concrete at his Richmond home. His head broke his fall. He nearly died from his brain injuries. That he survived and recovered confounded his doctors.
His visitors could do with their own miracle. But for now they’re hoping for something simpler — an intro to some artists who might donate time to help MND fundraising and awareness would be good.
Molly is sitting on the couch in his dark living room. Ian is in his wheelchair off to the side. Neale is standing in front of Molly as he introduces himself.
“I’ve got MND. And he’s got MND,” he says, tilting his head towards Ian. “And we’re going to die from it.” For a bloke who doesn’t think about how he’ll cope in a year’s time, Neale is remarkably direct.
Ian didn’t know Neale before he was diagnosed. They were in different worlds. He was a respected young oncologist; Neale was general manager of football operations at the West Coast Eagles.
When Ian was considering a direction after medical school he had a choice of specialising in neurology or oncology.
“I went with oncology because I figured I’d be frustrated to be a doctor for neuro patients — you can offer hope to people with cancer. At least I could treat them,” he recalls.
And then he ends up with MND. The king of all the neuro killers.
Neale Daniher opens up about MND2:12
Football legend Neale Daniher reveals his struggle with motor neurone disease and his hopes for the future
IT’S mid-April. Neale is sitting opposite again, in a coffee shop near his leafy street. Today his hand trembles as he pours a jug of water. But not a drop spills. He’s savouring independence while he has it.
He explains how he’s become slowly but surely weaker. It’s been four months since that first coffee in Camberwell.
Four months is short in the context of a life. But when you have a “best before” date, every one of those 120 days counts.
It’s the first time he’s seriously meandered in conversation to the tougher side of his fight. Yet, with it, Neale is curiously upbeat.
When first he would say “the cure won’t be for me”, his language has switched to one of vague hope. The more he’s learned of promising research under way to find a cure, the more hopeful he’s become.
“Who knows what some treatment could come up with tomorrow? If there was a trial drug, I’d be a candidate but I don’t want to spend my life chasing false dreams,” he says.
“I’d rather be drinking a wine up the road with John on Tuesday afternoon than being connected up to some equipment in hospital.”
Clockwise from top left: Former footy team-mates Terry Daniher, David Neitz, Neale Daniher, Todd Viney and Simon Madden; Neale with fellow MND musketeers Dr Ian Davis and Patrick Cunningham; Neale catches up with Old Men’s Club friends Bill Patullo and John Thomas. Pictures: Tim Carrafa
John Thomas is one of three chaps from his street who, with Neale, form the Old Men’s Club. When Neale and Jan returned from WA last December, he reconnected with them.
Every few Tuesday afternoons at one of their houses they sip wine and eat cheese and crackers. They have a laugh. It is as much for them as it is for him.
Two meetings ago, Neale decided one of them should bring their favourite song and tell the story behind why it was. The first one (not Neale’s) was In the Mood by Glenn Miller. You’ll have to imagine the story that goes with that one — it probably involved a dance hall and some dainty blonde bird.
Neale doesn’t say it, but he must have worked out that giving is most satisfying. That sort of mindset would have made him the obvious choice for Bombers captain at 21. Real leaders lift the people around them to their best.
One of his old Assumption boarding school friends, Jim Morgan, described Neale putting that into action. He recently heard from an ill mutual friend. Neale had been texting him, checking up that he was doing OK and asking whether he could help.
“Here Neale is, with this s--t of a disease and yet he’s checking up on the rest of us. Typical. That’s just the sort of bloke he is. He’s always been like that,” says Jim.
As an older boarder, Neale would check in with the new, homesick youngsters at Assumption College. Ray Carroll, sports coach at the “footy factory” (so-nicknamed because the school has produced Neale and 139 other VFL/AFL players in its history), says Neale was a perfect big brother for those young boys.
He’d been well-trained. There was no time for selfishness on the family property in Ungarie. He was the third oldest of eight sisters and four boys — Essendon teammates in 1990 for one history-making match with Terry, Anthony and Chris. Their on-field success bestowed on the Danihers the honorific of footy’s Royal Family.
The Daniher siblings knew he wasn’t cut out for the farm. His mother is said to have secretly wished he’d join the priesthood. He won a scholarship to St Patrick’s College in Goulburn when he was 12. He boarded there until Assumption.
Chris was three when his big brother left for boarding school. He now runs the property. When they were growing up, they were in robust Aussie rules territory, being so close to the Victorian border. Out there in those days, clubs existed without a town.
From the Daniher family album
NEALE’S dad, Jim, is 86 and “sharp as a tack”. He still feeds the sheep. Mum Edna, 81 — she of the famous roast lamb and trifle dinners — still tends the garden.
The Daniher 11 are from good, strong stock. Neale’s form of MND isn’t genetic, as with 10 per cent of MND sufferers. That’s lucky, because with so many siblings, he may not have been the only one in strife.
Neale’s MND is in the 90 per cent known as “sporadic”, more aptly described as “seemingly random”.
The first gene linked to MND was discovered in 1993 after a decade of searching. It’s called SOD-1. It’s a fitting name for a sod of a disease. Now they’ve identified 20 genes.
But these genes only show potential genetic susceptibility. Finding a drug to stop it triggering is still evasive, yet getting closer.
For the other 90 per cent finding the cause is critical to working out how to stop it. So far researchers have found medium-strength links between MND and such varied things as blue-green algae exposure, professional sporting careers, Gulf War veterans and cigarette smoking.
Neale fits one category. Ian doesn’t seem to. There’s still a lot they don’t know. But Ian, with his medical mind, has some hope.
“I lose some movement or strength and I think, ‘if they find something just to stop it now, I could live like this’. Then something else goes and I think the same again,” Ian says.
“The human mind is incredible. What it can get used to. How much it adapts to circumstances so that it still wants to live.”
A WOMAN on a train seat near Neale glances over a few times. Anybody with half an interest in football and over the age of 30 remembers that face.
As she passes him to step from the train, she pauses. “Sorry to hear about your brother,” she says.
Neale’s eyebrows shoot up. He didn’t have the heart to tell her that he was the crook one. He smiles and says thanks. And he thinks: “I can’t be looking too bad then.”
Neale met Jan at a friend’s 21st birthday party. She wasn’t a footy groupie. As Jan now describes: “We netballers thought the footballers were up themselves. But Neale wasn’t.”
She’s always known he worked hard. But now that he is giving his full attention to Cure for MND, for the first time in all these years she’s seeing it with her own eyes. Almost every spare moment at home is spent working away in his office.
Daniher brothers: Then and now
He wanted eight children. Jan said she could meet him at four. Within six years they had their four.
Neale says he picked well in the biggest and most important choice of his life.
“I got it right and she got lucky,” he says with a grin.
“Having a young family were the happiest times of my life.” Then he adds: “I’m happy now. That’s the only moment that matters. I have a challenge and I’ve always liked challenges. Part of the fight is to remain happy.”
LAUREN Daniher doesn’t remember her dad playing football. She was a toddler when he played his last game.
It was more about her dad “the footy coach”. Jan recalls the four kids — Lauren, Luke, Rebecca and Ben — sitting silently in the back seat of the car after a game. Dad needed radio silence.
“He needed time to process the stress and settle down. Then he was all right,” Jan recalls.
Lauren says Neale didn’t often talk about footy with the family.
“He was just Dad. Even in the years when Melbourne wasn’t playing well. He’s like that with MND now,” she says.
Lauren is an emergency nurse. She’s tended to MND patients and knows how the disease will affect her dad.
She’s never seen him angry about his diagnosis. When he was in WA, she’d visit her parents with her sister sometimes, a little taken aback each time to see how his MND had progressed. It seemed like it was going fast.
But her dad’s decline seems to have slowed. Is that because she sees him more often? It’s hard to say. The family are grateful it’s not as aggressive as some.
“Dad told us he doesn’t feel unlucky. He said he could’ve been diagnosed with a brain tumour and had only two weeks to live; that at least he wasn’t in his 20s or 30s; lucky that he didn’t go suddenly from a heart attack,” Lauren says.
A few days before the media reported his battle in March last year, Neale sent a group text message to friends he hadn’t had time to tell. He didn’t want them to read it first in the paper.
And then he signed it: “Play on. Neale”.
That’d be right. When it’s time-on in the last quarter and you’re fighting from behind, you don’t slow down the game.
You suck in some air and go harder.
Twitter: @RuthLamperd
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Vision: Tim Carrafa
Interactives: Shane Luskie
Video editing: Craig Hughes
Content producer: Michelle Rose
Originally published as Play on: Neale’s battle with The Beast