Mark and Prue Winter talk about living with motor neurone disease

MARK Winter first noticed something was wrong last September, when his foot started scraping along the ground as he walked.

The primary school teacher, 40, says he was initially unsure of whether the infliction was real or imagined.

But all of a sudden, the only way he could stop his foot from scraping was by consciously willing it not to.

"It felt weird thinking about walking, because it's normally something so natural," he says.

"If I concentrated and thought about making it not scrape I could manage to walk normally.

"But it got progressively worse, to the point where if there was a bit of a lift, I'd trip."

His wife Prue chips in: "The way he described it was, he said, ‘My walk feels like it’s broken’," she says.

In November Mark finally had enough of his "broken" walk, and visited his GP to find out what was causing the problem.

It wasn't until January, after many scans, tests and meetings with experts, that Mark and wife Prue received Mark's crushing diagnosis: he had ALS, a type of motor neurone disease.

Mark and Prue are having coffee at The Good Loaf bakery, sharing their story to help other patients know they are not alone.

They take turns answering the questions -  frequently talking over one another and finishing each other's sentences.

Prue is unflinching, relaying the details of her family's devastating situation with a gritty resolve.

Throughout the interview she often explains the wider context of the aspect in discussion, shares anecdotes and makes jokes, determined to keep her sense of humour.

Mark is more considered.

His speech has slowed slightly due to the disease, but one gets the impression he's always been softly spoken and sensitive - it's easy to see why he was a popular prep teacher at Kennington Primary.

But what isn't evident in either of their voices is any trace of bitterness - they are simply dealing with Mark's illness as best they can.

Motor neurone disease is when the nerve cells that control the muscles fail to work properly, progressively worsening until patients are unable to move, speak or swallow.

Most people with ALS only live between two and five years from the onset of symptoms.

"They're sort of saying the way I'm treading it's the normal rate," Mark says, without a hint of self-pity.

"But you talk to these specialists and you say, 'How long will it be until I'm in a wheelchair?' and they don't know."

Indeed, much about motor neurone disease remains a mystery, including what causes it and how to cure it.

What the medial profession does know is it usually develops in people between the ages of 50 and 70, is twice as common in men as women and rarely runs in families.

The recent Ice Bucket Challenge - the global phenomenon that involved thousands of people drenching themselves in icy water - has helped lift the profile of this insidious disease; a welcome development to patients and organisations alike.

Motor Neurone Disease Association Victoria regional advisor Eric Kelly says the challenge has had an "astronomical" impact on families affected the by the disease.

"It's just been amazing," he says.

"It's not just the funds, it's the awareness as well - the fact people are out there talking about this disease."

Mr Kelly says the disease is rare, and it's not uncommon for doctors and therapists to go through their entire working lives without encountering a single person with it.

He says the challenge has been a welcome gimmick, a spot of fun to shine light on a heartbreaking condition.

"It's good to have something to laugh about," he says. "There's not much to laugh about with this disease."

Mark Winter knows this all too well.

One year after his symptoms first appeared, Mark now relies on crutches to walk and struggles to turn himself around or lift himself from the couch.

"I've been told, 'You really do need the help of a four-wheel frame'," he says.

"It's confronting.

"When I first had to use the crutches I really didn't want to use them in public.

"Each piece of equipment you have to mentally get around.

“You look at your foot and you go, ‘why won’t it do what I want it do?’

"Then you’re watching it creep up. Now it’s not just my foot, now it’s my leg and you go 'damn, that’s really' …”

"Crap," Prue intervenes. 

"It catches you off guard at times," Mark says. "It impacts you."

Mark's illness has also had a profound affect on the couple's daughter, Anna, aged eight.

Prue says Anna knows her father is ill but doesn't understand why he won't get better.

“She's a very perceptive little girl," Prue says.

"We told her that Mark had been seeing the neurologist and Mark was sick and it would get worse.

"As far as it got then was that Mark would end up using a wheelchair.

“One of the strategies someone gave us was to ask her if she was ready to know more and she just flat out said no.

“She said she was sorry that she had to know anything.”

Prue says Anna is very sensitive to Mark's illness; helping him put his slippers on and fetching things for him around the house.

She has also become protective of Mark.

"A couple of times she's said that she doesn't want Mark to know that (Mark's illness) stresses her, so she keeps a fair bit of it to herself," Prue says.

“She says, ‘Don’t tell dad that I’m sad he doesn't come on our bike rides anymore’.

"So, for her it’s simple things, like, 'Why do we need a new car? I like our old car'."

Mark explains that the family will soon need a new car to accommodate an electric wheelchair.

Indeed, there's a lot to plan for with MND. 

As well as attending the many appointments with specialists - including a speech pathologist, dietician, occupational therapist, lung function specialist and neurologist - the couple also has to think about what new piece of equipment Mark will need as his illness progresses.

This is where the Motor Neurone Disease Association of Victoria has been an enormous help.

Shortly after Mark was diagnosed, Eric Kelly visited Mark and Prue, telling them where they could access information and the medical services Mark now required.

“They know what’s coming for us, whereas we don’t, a lot of the time," Prue says.

“And a lot of the time we’re just dealing with each day … and they have a little more foresight for us.”

Friends, family and the wider community have also been a tremendous support to the couple.

Colleagues and friends are constantly making them meals, organising regular coffee catch-ups and one friend landscaped their garden.

In addition to this, more than 20 people completed the Ice Bucket Challenge at Kennington Primary last month, Mark's old friend Brooke Cameron is organising a fundraiser for him and in November the school will attempt a world record Nut Bush dance.

“Our faith in humanity has come back tenfold because we can’t get over what people want to do," Mark says.

"The community's been really good.

"You get lovely feedback from colleagues and families you've been dealing with for years - we now put colleagues in the friend basket; they're more than colleagues.

“We’ve realised how big that family unit is now because of that overwhelming response to Mark," Prue says.

Mark is cherishing every day; spending quality time with friends and family, painting and teaching Anna to play the guitar and piano.

He is making the most of a bad situation, but is wary of what lies ahead.

In November, Prue will leave her job as a business teacher at Bendigo Senior Secondary College, to look after Mark.

“I’m going to have to release a lot of control, because Prue’s going to have to be my hands, my voice, my everything," Mark says.

“And so that will be quite confronting for both of us I think. 

“What we can gather is from this point on it's going to have a big impact on Prue and Anna.”

The tone drops slightly. There's a pause.

“I’ll be fine," Prue says, quietly. 

“That’s what you do – you don’t go, ‘only when it suits me am I going to look after you’.

“I don’t like the word carer," she says, firming again.

"I’m Mark’s wife, I don’t think I’m his carer, I don’t think I will be, and if the roles were reversed I could guarantee he would take care of me.”

"Yes, I would," Mark says, smiling. "And I'd do a good job."

To learn more, visit: www.mnd.asn.au