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Truckie diagnosed with MND says ‘it takes your heart, your soul and your pride’

Warren Acott, 66, had spent over 40 years on the road, including more than 20 years as an owner operator – that was until he was recently forced to give it all up.

He was diagnosed with motor neurone disease (MND) in July last year and in a double blow, also found out he has kidney cancer.

“I’ve got cancer in one of my kidneys – but we’ve got two kidneys. They were going to take the kidney out in September, but they can’t do it because I have MND and when they put you under it can affect your breathing,” he said.

Based in Toolleen in Victoria, just out of Bendigo, Acott had been using his ride on lawn mower as a wheelchair around his property. “MND Victoria have since given me a wheelchair for inside the house. They’ve been amazing in helping me navigate through it all and get the support I need,” he said.

He hopes to get the mower geared up to 20km/h. Image: Warren Acott

Now Acott is planning to use that ride-on lawn mower to help raise awareness for MND and join the push for the government to make it a notifiable disease.

“If I can get this off the ground, I’m planning on riding the lawn mower from Toolleen to Canberra, which is about 600 kilometres away. I’m hoping to get the mower geared up to 20km/h.

“It’s not a protest or a strike, I just want to try and gather 800 people and create some awareness. I want to try and get as many people involved as we can – not to follow me, but to meet me on the lawns at Parliament House – and see if they’ve got the guts to say we’re not worth funding.

“MND sufferers have been calling out for help for years and years. When we get to Parliament House, I’d like to see the politicians come out and say that we’re not worth it. MND doesn’t affect just the person that’s got it, it affects the whole family.”

“I don’t even know if I’m going to be able to pull this off physically. But if I can find a support crew, we’ll launch it. I’d go up through Shepparton, Griffith, Leeton and Wagga, because there’s a huge cluster of MND there and hopefully – it might be a dream – but get people to meet me there on the day and we can knock on the door at Canberra.

“More and more people are getting diagnosed with MND every day.”

As Acott revealed, he didn’t think much of his early symptoms. At first it was just a cramp in his left hand. “When I was on the tools working on my truck, my left hand used to cramp up, so I’d just switch to the other hand until the cramp was gone – but then I started getting tingling up the arm too,” he explained.

“After that I went and got checked. Now I’m in a wheelchair. I can still stand up but my left arm isn’t good and with my right arm, I struggle to pick up the phone. Your personal self goes down too.

“I’ve driven on some shit highways but this is the worst one.”

On reflection however, Acott believes there were other signs earlier on, he just didn’t realise.

It’s not the first time he has spoken with Big Rigs, though this time the conversation was very different. “Even though I was only diagnosed in July, I think I might have had it longer. I remember when I spoke to you in November 2022, I was in Ceduna and I fell over right after we got off the phone, so I think that might have been the start of it,” he said.

“The funny part about MND is that you don’t have any pain, other than the pain in your neck because you start to use extra neck muscles to support yourself as your limbs die off.

“The last thing that goes is your lungs. I can hear it in my speech now. I’m slurring my words and that’s all part of it. It’s a horrible thing – I’m no expert, I only learnt all this in the last few months.”

Acott says he continued driving his truck, a 2009 Kenworth T908, for as long as he could. “I kept going with the truck until I fell out of it – then I sold my trailers.”

No longer able to work, Acott says he’s now having to sell everything he’s worked hard for throughout his life just to survive. “I’m now in the process of selling my truck, selling all my tools – you need to sell your whole life away.

He’s already sold his trailers and is in the process of selling his trucks. Image: Warren Acott

“It rips your guts out, seeing everything you worked for go out the gates.

“I know there’s more to life than material things but this disease just takes your heart, your soul and your pride – it takes every bloody thing.”

MND is a terrible disease that affects the nerves, known as motor neurones, which are found in the brain and spinal cord. Sadly, there is no cure.

According to MND Australia, it is estimated that there are around 2100 people around the country living with the disease at any one time. On average, every day in Australia, two people are diagnosed with MND and two people lose their lives.

With two of his four grandkids, Moby and Akiko. Image: Warren Acott

Currently, MND is not classified as a “notifiable disease”, which means doctors don’t need to notify the government of new cases, so cases aren’t recorded or monitored.

Being made a notifiable disease would mean data would be available about who has the disease, allowing researchers to identify trends and look at things like their age, where they live, and more.

While 5-10 per cent of instances of MND are genetic, the causes in the remaining 90-95 per cent are unknown.

Many researchers are continuing to explore possible links with environmental factors. Several regional areas of NSW, such as the Riverina, Griffith, Wagga Wagga and Leeton have become hotspots for MND, with residents being diagnosed with the disease at up to seven times the national rate.

The question that remains is, why?

Scientists are still researching whether pesticides, metals and blue-green algae toxins could increase the risk of contracting MND. Other studies have also explored possible links with diesel exhaust fumes.

“I volunteer with anything I can, as you do, to try and help. When they survey you, there’s usually about 8-12 questions that relate to diesel and I answered yes to all of those. I don’t know how long I’ve got left, but if I’m going to go out, I want to do something to help,” Acott said.

Now Acott has joined the push for MND to be made a notifiable disease. He’s found the system difficult to work around and find the support he’s needed – and says he feels like he’s out of his depth. “I believe if MND was a notifiable disease, resources would be easier to access.”

To support Warren Acott’s cause or to find out more, please click here.

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