NHILL’S John Batson is one of the driving forces behind the effort to raise money for Fight MND at Saturday’s Wimmera Football League match between Nhill and Dimboola.
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In his 57 years he has had watched as three family members have succumbed to the, as yet, incurable Motor Neurone Disease.
“That’s the really cruel bit – you stand there watching them knowing you can’t do a bloody thing about it and nobody can,” he said.
It started with the loss of Nhill and Wimmera Football League legend Wes Warwick in 1984. Wes was the husband of John’s aunty Dot making him an uncle by marriage.
"That’s the really cruel bit – you stand there watching them knowing you can’t do a bloody thing about it and nobody can."
- John Batson
Eight year’s later Bob, John’s father, was also diagnosed. John said his immediate one-word reaction upon finding out the diagnosis could not be printed.
“I started asking all sorts of questions,” he said.
“Dad and Wes worked together on a number of occasions just doing things like dipping sheep and stuff like that.
“You start to question if that is where it happened for it to be the same thing.
“But the randomness of it was really tough. Dad had been having trouble with his foot – he started by having a few falls and tripping over his feet,” John said.
“After a couple of times, he said, ‘Don’t be stupid – I’m just not picking up my feet’ and we had to say, ‘no’.
“So we went to a doctor, who sent him to a specialist.”
The specialist looked at Bob and told him and his family he could not lift his foot because its muscles were not working properly.
“I can’t even remember which one it was,” John said.
“He ended up wearing a leg brace for about 12 months just to hold this foot up. He walked with a slight limp but that was alright.
He could still get around and it stopped him from falling.”
Bob’s condition gradually worsened over a three-year period. He died on May 22, 1995. Between his diagnosis and his death he did not spend a night in hospital.
His wife Leone took care of him every day and John said it was only on Bob’s last night that she could not.
“We had been there for lunch and about half the afternoon and she rang me about 7pm,” he said.
“She said, ‘Dad’s slipped a bit I’m not sure I’ll get him into bed’. So I went in and helped him get into bed and I said to mum that I was staying the night.
“So I just stayed there and it was about 5pm the next day that he died.”
All four of his children and his wife of 45 years were present when he died at age 68.
John was 35 at the time and he said he lost a mate as well as a father.
“He was my workmate,” he said.
“Until the last five years, he was out there every single day as half the workforce.”
"It was hard seeing Mum watch another family member slip away slowly... She lost her husband, a brother and a brother-in-law to the silent killer in a 28-year period."
- John Batson
For John, one of the toughest things about watching a second person struggle with the disease was how different the symptoms presented.
The disease is a progressive, terminal neurological disease where.
People with MND progressively lose the use of their limbs and ability to speak, swallow and breathe while their mind and senses remain intact.
While the top half of Wes’ body was affected, it was Bob’s lower body that suffered most.
“I can remember Wes walking around his home with an oxygen bottle because the muscles in the top half of his body were starting to collapse, making it difficult for him to breathe,” John said.
“Whereas dad couldn’t walk around for 18 months or so but right up until the very end, he was capable of doing things with the top half of his body.”
Fourteen years after his father died, an uncle on his mother’s side was diagnosed.
Kevin Hogan learned in 2009 that he had MND and three years later, the family had lost another person to the disease.
“It was hard seeing Mum watch another family member slip away slowly and knowing we were not any closer to a cure than when we first learned of the disease,” John said.
“She lost her husband, a brother and a brother-in-law to the silent killer in a 28-year period.”
In August 2014, AFL personality Neale Daniher announced he was battling MND.
John first came into contact with Daniher 10 years earlier after his son Daniel had been invited to do pre-season training with the Melbourne Football Club for a week.
Daniher, the then Melbourne coach, invited Daniel to stay with him for the week.
“He made him feel like family,” John said.
“Neale was looking at him as a potential recruit, knew he was a country boy and said, ‘You have to have somewhere to stay with a family around you’ – so that’s what he offered up.”
Since his diagnosis, Daniher has fought hard to raise awareness of MND. John considers those actions one of the biggest advancements in the search for a cure.
“The fact that he has said, ‘No, I’m not taking it lying down. I’m not just going to pass away quietly’,” he said.
“What they’ve raised now is phenomenal.”
Within Nhill, John is far from alone in having to watch people fight the disease.
Along with Wes and Bob, he also knows Hugh Miller who lost his life to the disease.
In a town of not much more than 2000 people, it has had big impact.
As well a fighting to find a cure John wants to raise awareness so people watching their loved ones battle have support.
“Whenever I hear someone has been diagnosed with it, I just feel terribly flat for them because you just know it all happens slowly,” he said.
“It’s a disaster in slow motion with a fatal result.”
At Nhill’s Davis Park on Saturday, the crowd will watch personalities from Nhill and Dimboola plunging into icy water.
Among the crowd will be plenty of people touched by the disease including Dot Warwick, Anthea Miller and John’s mother Leone.
“She’s really happy we are doing something,” John said.