The first sign that Ballarat resident Kevin Freeman had motor neurone disease came when he was unable to control his shaking hands while giving his late wife peritoneal dialysis.
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Four years later, Mr Freeman has lost the use of his hands and has started to have trouble breathing and walking, moving himself about the house by foot on a chair attached to caster wheels.
Despite this, he still lives at home and maintains a positive outlook on life.
MND is an affliction that affects the nerves that connect the brain to the muscles that facilitate movement, breathing and speech. The nerves, called motor neurones, gradually degrade and waste away, causing the muscles to weaken.
There is no cure for MND and the average life expectancy, according to MND Australia, is just two to three years.
The second time the disease became a real concern for Mr Freeman came while driving through the Domain Tunnel in Melbourne.
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"I'm on the Monash Freeway and I'm about half a kilometre or a kilometre away from the tunnel heading back towards the West Gate Bridge and I had a choking attack. I couldn't breathe for a couple of minutes," he said.
"I was really getting very weak and very concerned... I'm in the bloody tunnel, there was nowhere to park before the tunnel, I got through the tunnel and I got out the other side and a little snippet of air, an awful sound came out of my mouth and then a little bit more, a little bit more, and eventually I recovered."
The final straw came when Mr Freeman was doing some gardening and started to have trouble breathing. After alerting his sister, he passed out and woke up two days later at Ballarat Base Hospital with tubes coming out his stomach.
While hospital staff had a hunch as to what was causing Mr Freeman's issues, he was sent to the Austin Hospital in Heidelberg for further tests to confirm it.
"I was there for quite a few days and they took me into this special room and they wired me up with all these wires off my head, off the side of my face, my chest, my arms, my legs, and my bloody toes," he said.
"I had to stay there for 12 hours on my back with all these wires hooked up and that's when they diagnosed me with motor neurone disease."
Mr Freeman equated the disease to a lion slowly but surely stalking its prey.
"My brain is sending the messages down there, but it's just not working. The muscles are just not working because the neurons in my hands are all dead," he said.
"It's like there's a lion right out there in the distance and this bloody lion's watching me, he knows I'm an easy kill but every now and then, he creeps a little closer. That's what this disease is like. It creeps up on you."
Mr Freeman still lives at his Eureka home and receives visits from nurses and support staff multiple times a day. When the weather is good, he jumps on his scooter and heads into the shops to 'terrorise the community'.
"I'm pretty well looked after and there's no place like home," he said.
"People are fantastic because if you go into a supermarket and you want a bit of milk and your hands don't work, you've only got to ask somebody and they're more than happy to help you... They can see you've got a problem and they'll bend over backwards to help."
"There's an old saying, your mind and your brain is the best healer of your body. If you're in a good mindset and you've got a positive outlook, you last longer."
Victorians are being urged to support MND Victoria's 2021 Tax Appeal.
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