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Battling An Unwinnable Fight

As a coach, Daniher took Melbourne to the 2000 grand final. Credit: Newspix

It begins with signs so subtle you almost miss them.

You go to shake your mate’s hand. He looks at you funny. He’s thinking to himself, that was a bit piss weak. When it happens again, he makes a comment. Maybe he starts quietly keeping tabs on you. One day you’re hanging out the washing. You grab a pair of socks but you can’t grip the bloody pegs properly. You’re just getting old, you think.

Then something weird happens. Your right arm goes into an involuntary spasm, throbbing like a motorbike engine. You take yourself to the doctor. Your doc starts running tests and trying various treatments, trying to eliminate potential causes. They tell you it could be anything.

That’s helpful. But you remain hopeful. If it could be anything, it could be nothing. The doc mentions this disease you’ve vaguely heard of, don’t know much about. Motor neurone disease – MND, the doc calls it. Every time he mentions it, a look creeps across his face and he’s quick to add, “You don’t want that”. You read up on it. The doc’s right. You definitely don’t want that.

The problem is, you don’t have a say in the matter. The thing with this disease, the doc explains, is there’s no prevention and no cure. But you’re fit, you’re healthy, you take care of yourself, you tell him. The disease doesn’t care. In fact, in some kind of sick irony, it isn’t quite as random as it first appears. Indeed, if there’s any method to its madness, it’s that it seems to strike fitter, more active blokes. Those with slim waistlines and even thinner medical files. Blokes like Neale Daniher. Blokes like you.

Daniher was working as general manager of football operations at the West Coast Eagles when he was diagnosed with MND in 2013, aged 52. A member of the AFL’s most famous footballing family – brothers Terry, Anthony, Chris and nephew Joe have all played for Essendon – Daniher played 82 games for the Bombers in the Eighties before his career was cut short by knee injuries. From there, he went on to coach Melbourne for nearly 10 years, taking the Demons to the grand final in 2000.

“If he hadn’t got injured, he would have been one of the greats of the game, that’s how good he was,” says Channel 7 AFL commentator and former teammate Tim Watson. “He just has this desperate competitive edge to him. It’s probably what’s helping him now with what he’s been dealt with.”

I meet Daniher for a coffee in the Hugh Trumble cafe inside the members stand at the MCG. A tall man with a powerful build, he immediately reminds you that athletes, even in retirement, really are built with parts from a different scrapyard than you and me. Dressed in a navy-blue jumper with a green checked shirt peeping over the collar, he arrives early to our interview and walks purposefully to his seat. He seems like a man on a mission.

When we get to talking about his disease, Daniher speaks with the gruffness you’d expect of an old-school footy coach who grew up in the bush. At one point he tells me he couldn’t give a fuck about what I want to get out of him and that he’s not about to pour his heart out. “This is real, mate,” he says sharply.

Clearly he’s lost none of his renowned combativeness and remains a formidable character. “I didn’t say I’d be easy,” he says, grinning. He’s not, but his bluntness is tempered by an easy smile and a disarming chuckle. He doesn’t seem like a man facing down a terminal diagnosis.

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Daniher’s speech is slurred and the webbing on his right hand has begun to splay out, making the hand drop slightly. But his legs remain strong. He can still knock out a kilometre on a treadmill, take his dog for regular walks around his home in Canterbury in Melbourne’s east, and swim laps of the pool with flippers on.

Before developing MND, Daniher had been “fit as”. He’d do 50 push-ups each morning and alternate intense interval sessions with gym work, pounding tirelessly on the speedball. When I put it to him that it seems a little unfair that MND appears to strike the most active and healthy among us, Daniher shrugs. “It just reinforces that life isn’t fair. You’ve just got to play the cards you get dealt.” Playing them he is. You’d think it would take incredible strength of mind not to allow the darkest thoughts to haunt your every waking moment. To not think about the horrifying fate that awaits when you inevitably meet your maker and, in Daniher’s words, “can’t breathe, can’t speak and can’t swallow”.

He won’t have it. He shakes his head and fixes me with a stern look. “I ask you, if you dwell on that every day, how would you go?” Not very well I tell him. “Nah,” he says darkly, shaking his head again. Being positive, he tells me, “is a no-brainer”.

Instead Daniher lives day to day. Not in the facile, Hallmark-like way you hear prescribed by new-age evangelists in dodgy self-help books. He really lives hour to hour. He doesn’t have a choice. You can’t project too far forward, he tells me, not only to safeguard your own mental wellbeing, but your family’s, too. If he keeps positive, he says, his wife and four adult children can just about manage to remain upbeat as well.

“You accept the fact that there’s no cure and no treatment, but you need to balance that with the need to fight.”

“They’re fine as long as I’m fine,” he says simply. Brother Terry, who played 313 games for South Melbourne and Essendon, confirms his younger sibling’s stoicism. “He’s been positive, the way he always has been. So we go along with what he does.” Even Daniher, though, will admit that a terminal diagnosis requires some degree of rationalisation. “There’s a balance,” he concedes. “You accept the fact that there’s no cure and no treatment, but you need to balance that with the need to fight.”

Daniher frames that fight as one against a beast that lives in a cave. “It comes out, it attacks and it kills, then it hides away,” he says. “So what we do is shine a light on the disease. If it’s exposed we can kill it. That’s how I fight it. And I’m going down swinging.”

Motor neurone disease was discovered by French neurologist Jean-Martin Charcot in 1869, and is also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease after the famous New York Yankees baseballer. It’s a neurodegenerative condition in which a protein called TDP- 43 begins to affect the nerve cells in your brain and spinal cord, destroying the means by which messages are sent to your voluntary muscles.

It’s rare, but some horribly unlucky person in Australia – literally any one of us – will be diagnosed with it in the next 12 hours. In the same timeframe, another will die.

The most common form of the disease is called limb-onset MND, in which you notice weakness in your hand muscles or your foot. Also common is bulbar onset, which affects the muscles of your mouth and throat, causing your speech to slur and difficulty swallowing. There’s a small genetic link, but most cases are sporadic, coming out of nowhere.

“…we’ve also found when people have diabetes they have a slower disease progression.”

The average life expectancy is 27 months from diagnosis, but no two cases are the same. The disease’s grimness is perhaps matched only by its mysteriousness. Some of its idiosyncrasies are beginning to emerge though, ones that could potentially pave the way towards better treatment “MND usually affects the very active, very athletic,” confirms Dr Rebekah Ahmed, a neurologist at Neuroscience Research Australia. That’s strange enough, but perhaps even more curious is the fact that metabolic factors normally considered unhealthy can change how the disease progresses. “It’s actually protective to have a higher cholesterol level, and we’ve also found when people have diabetes they have a slower disease progression,” Ahmed says. I look at her a little stunned, causing her to blush. “It’s counterintuitive,” she agrees.

It’s for this reason that MND patients are encouraged not to diet. “The factor we know predicts prognosis is the patient’s ability to maintain BMI,” she says. Instead, you’re encouraged to load up on protein and, if you happen to be on cholesterol-lowering drugs, you’re immediately taken off them.

A drug called riluzole, which all patients take, helps protect your neurons but only extends life expectancy by 3-6 months. Other than that, nothing much has changed since 1869. The sad truth is that if you have MND you will die sooner rather than later, most likely from respiratory problems, either in your sleep or from a cardio-respiratory arrest. The alternative, Ahmed says, is you die from swallowing difficulties. “They get pneumonia because all the food goes down into their lungs,” she tells me.

She pauses for a moment before giving me a slightly grave look. “It’s probably the worst way to go because you’re suffocating.”

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Dr Ian Davis knew immediately that something was wrong.

Another active bloke who ran and worked out regularly, in his role as a blood cancer specialist, Davis dealt with patients with terminal illness every day. He was used to diagnosing fatal conditions and delivering catastrophic news.

Then one day back in 2011, he found himself listening to a bleak diagnosis delivered by a dispassionate doctor. Davis had noticed his foot dropping during one of his rounds on the haematology ward at St Vincent’s Hospital in Melbourne. Unlike most blokes, he didn’t ignore it and sought treatment immediately. “I hoped that maybe I’d missed something and the neurologist would tell me I was a fool,” he recalls.

He was no fool. When the doc delivered the news, Davis, who was only 33 at the time, initially felt numb. It was only when his wife offered to drive home that it hit him. “I realised everything had just changed,” he says. “I was no longer able to be a father, a husband or a doctor.” He proceeded to have the first panic attack of his life right there in the car.

His next response was equally textbook. He went into denial. He kept running, kept working, kept pretending nothing was wrong. From there he sunk into severe depression and contemplated suicide. As his legs began to fail, he went from a brace, to a walking stick, to a wheelchair. At the same time, he separated from his wife and pushed his friends away. It was, he says, “a horrible year”.

But he got through it.

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Antidepressants helped stave off his despair and he managed to work things out with his wife. “I realised I couldn’t do this alone,” he says. Gradually, a conviction to help others grew. “I thought, I can’t sit on my bum and do nothing,” he says. And so Davis founded the Cure For MND Foundation, which Daniher joined last year. At the same time, Davis and his wife had a baby boy, now eight months old.

“There was no plan to have kids,” he says. “I thought it wouldn’t be fair on my wife or the child, but he’s brought so much joy to our lives.” A man who once thought of ending it all now has too much to live for.

Davis likens MND to Albert Camus’ essay on the myth of Sisyphus, in which an ill-fated king is stuck in purgatory, pushing a boulder up a hill, only to have it reach the top and roll back down again. “Right now,” he says, “I’m back at the top, but I’m just waiting for the next little roll back down.” So, what would you do if faced by a disease that will claim your mobility, take away your dreams, rob you of your dignity and end your life prematurely? Granted, it’s an almost impossible question to answer without experiencing it.

Perhaps a better one is, what will you do with the time you have? You see, one of the reasons Davis and Daniher have been able to ride out the severe mental assault that accompanies their disease is that they’ve been able to work out exactly what they want to do with the rest of their lives. It’s something you’d be wise to address, whether you’re going to live another three years or another 73.

A bucket list is a good place to start. Davis jammed withPearl Jam, brewed his own ale, skydived and travelled. It was all good stuff, he says, but here’s the thing. As thrilling and rewarding as those experiences were, none came close to the gratification and sense of purpose he’s got from helping others who share his disease.

“One of the things you see in aged-care wards is that, when we get to the end of our lives, everyone asks themselves the same question: ‘Have I made a difference?’ Hopefully at the end of my life I can sit back in the final moments and say at least I did something.”

You’ll face the same question yourself one day. As Davis and Daniher’s fight shows, the time to get started on your answer is not tomorrow, next week or next year.

It’s right now.

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