Neale Daniher’s MND battle starting to bite but fundraising efforts still going

NEALE Daniher’s public battle with the deadly motor neurone disease is making a difference, but the footy legend reveals how his health is dipping.

NEALE Daniher’s fight to help find a cure for the deadly motor neurone disease is going as strong as ever, but “the beast” is starting to bite him harder.

The footy great reveals to the Sunday Herald Sun his breathing will be what pulls him up, even though he may still be upright.

“The way things are going, I might be walking, but not breathing,” Neale says.

“It just goes to show how MND knocks down different people in different ways.

“But we all end up the same.”

Neale's wife Jan helps him put on a jumper as she takes on more of the daily activities he has trouble performing. Picture: David Caird

Neale has for two years been the inspiration behind the nation’s most successful fundraising campaign for MND research.

Already $15 million has been raised through Fight MND and is making its way into a medical research community previously overlooked for research grants. The organisation was founded as Cure for MND by fellow sufferer Ian Davis and former elite tennis player Angie Cunningham — who died last year.

Two Big Freezes ago, Neale might never have considered he’d this year be mobile enough to walk ahead of hundreds of his “freeze army” from Federation Square to the MCG. But that’s what he will again be doing on the June 12 Melbourne v Collingwood match day.

For that, he is grateful. MND patients on average will be dead within 27 months from diagnosis. He knows he’s on borrowed time.

Picture: David Caird

Neale was given the bad news from doctors at the end of 2013. He told the Sunday Herald Sun in 2015 that he first became aware of his weaker muscles because he was having trouble pegging clothes on the line.

And one of his mates in Western Australia, where he was West Coast Eagles general manager, told him his handshake was not as good as could be expected of a boy from the country.

In typical Neale style, he took a deep breath and worked out how he might spend his final years, however few they would be.

“I’m lucky in a lot of ways — my disease has progressed slower than it could have, and I haven’t been hit with it as young as many people are. They often still have little children, but mine have grown up,” Neale says.

He says he’s heading up to four years living with MND. Only one in five MND patients live into their fifth year after diagnosis.

The fickle disease, which can crumble some sufferers into a wheelchair within a year, has saved him his legs so far. That’s ironic, considering it was his legs — specifically “doing three knees” — which cut short his wonderyears playing for Essendon in the 1980s.

Neale’s wife Jan brushes his hair, which he quite enjoys. Picture: David Caird

It means Neale has in the past year been able to walk his two daughters, Lauren and Bec, down the aisle at their weddings.

Every three months, he has lung function tests which determine how well he is able to draw breath. He says those tests showed a marked downward trend in the past six months.

Until a year ago he could still breathe well enough for a short swim, but “I can’t do that now”.

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He says his lung function is below the typical level for a healthy 56-year-old.

If the trajectory continues, he is likely soon to need help with breathing apparatus while he sleeps, and, after then, during awake times as well.

This much-loved man of football earned respect first as an outstanding footballer then as the coast of the Melbourne Demons. Friends lauded his mental strength and understanding of the footballer psyche.

Then, he was described as “The Reverend” because of his long sermons in defence of the Melbourne Football Club and his playing group.

Neale first noticed something was wrong when he had trouble using the pegs on the clothesline. Picture: David Caird

But with all this as preparation for a disease which doctors have voted the disease they’d least like to have, Neale describes a frustration and impatience which comes with the loss of independence.

Eating is becoming a struggle. He can’t raise his arms above his shoulders. This means he is not unable to dress himself.

“Buttons. I can’t do buttons,” he says. “Or spoons. But I can still use a fork. If you see me eating, don’t talk to me,” he says laughing.

In 2015, he was asked which aspect of the disease he most feared. Then, there was little the disease had taken from him. His speech was a little slurred, his handshake a bit weaker. But otherwise, the impact was mild.

“Losing my independence will be the hardest part,” he said then.

In his Melbourne loungeroom, he sits with the trademark crossed legs, leaning back deeply into the couch, his chin leaning against his hand.

“I’m impatient and frustrated with this,” he says. “But that is pretty typical. Nothing can prepare anybody for this.”

“Being totally independent is a feeling you take for granted.”

Most parts of his day spent devising ways to draw attention to what is a disease which “isn’t very sexy”. (Not many deadly diseases are.)

Attention for research dollars was seriously lacking, but Fight MND has helped bump up its public profile.

And rightly so — there are 2000 people living with MND in Australia at any time. It is not a rare disease because each day two to three people are diagnosed and two to three die.

The disease had been a victim of it’s own deadliness. Most medical research funding is often directed towards those diseases afflicting the most number of live sufferers.

That tide has turned. But Neale knows that the work he is doing won’t help him live longer. It will be about helping the generations of sufferers ahead of him.

“One day they will find a cure. I’m sure of it. Anything I can do to help that, I’ll do.”

And although he sees the progress in bringing MND out of the shadows, he feels an urgency to do more.

This time of year is busy for him. He’s hard to pin down for a photo and an interview. There are always meetings to attend. Strategies to formulate. Neale is still working a fulltime week.

“I know we’ve come a long way, but there is still such a long way to go with this. So much more than needs to be done,” he says.

“And I’ll keep doing what I’m doing till I can’t.”

fightmnd.org.au

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@RuthLamperd