Diagnosed with motor neurone disease last November, Rod hopes to not only raise awareness around the disease but also share his own unique experience.

"One thing I have found out about MND is that it affects everyone differently and not everyone's experience is the same," he said.

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"It's time for me to play my role and help raise awareness around MND."

A former editor of The Bendigo Advertiser and The Wimmera Mail-Times, Rod now works as the director of media and communications at Bendigo Community Health Services.

"It's important to tell my story because I am still the same person, I just have MND," he said.

"Don't treat people differently, engage with them and treat them normally because that's important for the person with MND to have that normality.

"I can still work full time, I can still speak to people, I can still get around, I can still eat, I can still do lots of things, it's the mobility side of things that has changed not only my life but my family's life."

MND can be difficult to diagnose as most initial symptoms can be similar to many other conditions.

For some people like Rod, it can take years to find a diagnosis.

"The sad thing is that with MND there is no blood test, it's basically testing you for everything you could possibly imagine, ruling all of those things out and unfortunately MND is the last thing standing and that is it," he said.

"That two year period was hugely frustrating and very stressful."

After having some issues with his balance and walking, Rod first contacted a podiatrist.

"About two years ago I got some new orthotics because I was walking on an angle with my feet and I just noticed this limp and I thought that was a bit strange," he said.

"I went back to the podiatrist and we changed the orthotics slightly, but the limp just progressed and got worse and after a period of time.

"Shortly after, I was on a walking stick just to get around for safety and comfort.

"I ended up seeking some help from a local health professional that does a lot of work with sports men and women and he recommended straight away that I should go see a neurologist."

After two years of testing, Rod was told he had MND.

"After years they said to me that they had ruled everything out and unfortunately MND was the last thing standing... welcome to the world of MND," he said.

Rod said hearing of his diagnosis was confronting.

"I think you go through a bit of a grieving process," he said.

"For me from the knees down I have kind of wasted away and I can't use my legs from the knees down and essentially it's affecting my mobility."

However soon after, he was contacted by MND Victoria, an organisation Rod said changed his life.

"It's a little overwhelming in the beginning because you have a two year journey with no real answers really," he said.

"The moment MND Victoria came along, my world changed.

"All of a sudden, there was much help and support and I couldn't function without their help.

"I now have a occupational therapist, a physiotherapist, there's a speech pathologist, a social worker, they are here to help all the time and all of these services get wrapped around you."

Rod admits there are some rough times but wants people to know there are times that have been positive.

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"A lot of people look at MND differently, some people want to know everything about it and some people want to know nothing about it. If you google it, you just get horror stories about it," he said.

"There are still dark days and dark moments but you need to be positive.

"You can sit in the corner in your wheelchair and wallow in your self pity or you can try and be positive about it because you gotta play your hand your dealt in life."

For Rod, the best thing he has done was reading other people's experiences and testimonials.

"It shows me that MND manifests its way differently in everyone and the symptoms are different and how it affects you is different but that positivity really shines out in everyone and that's a good life lesson."

The hardest part about living with MND for many people is accepting help and maintaining your dignity, Rod said.

"This disease takes your dignity and that's difficult to deal with," he said.

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"Pride is a powerful thing also, it can guide our decision making considerably and you just have to park your pride with this disease because if somebody wants to help, accept it.

"The other important thing - is wives, partners, children, friends the work they do is truly remarkable.

"You hope those people understand the difference they make."

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