Neale Daniher refers to it as "The Beast", but most Australians know it as motor neurone disease.
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The Ungarie-born AFL legend was diagnosed in 2013 with the incurable condition that claims an average of two Australian lives every day.
He has now worked with writer Warwick Green to tell his story in a book, When All is Said & Done, which was released last month.
Mr Daniher told The Daily Advertiser the idea for the book came as he sat down to write a letter to his future grandchildren. At the time he started, there were none, but father-of-four Mr Daniher is now also a grandfather of two.
"I wanted my grandchildren to know a bit about their Pop. I didn't know a lot about my grandparents," he said.
"Back in my grandparents' day, you didn't talk about yourself that much. But I was always interested in what their life was like, so I wanted to write a book so my grandchildren will know a bit about what my life was like.
"When I was first diagnosed with MND, I probably didn't think I would write a book. But I've survived longer than what was expected."
The book is a three-year project for Mr Daniher, who was in Wagga this week with his wife Jan on their way to Ungarie to visit his mother Edna and family members who are still living in the region.
He says every day is "a good day".
Mr Daniher admits his diagnosis in 2013 came as a shock, and that afterwards he began to wonder what advice he would offer his grandchildren.
"I would tell my grandkids to live life to the fullest, regardless of the difficulties that are thrown their way. Don't make excuses, I'd say. Never play the victim," he wrote in the book.
Mr Daniher was born in 1961, the third of 11 children and part of the famous Daniher footballing clan of four brothers who played a combined 752 AFL games. He went on to become a highly respected coach.
It is those close links with the AFL that have helped Mr Daniher build a profile for The Big Freeze, a major annual fundraising event for FightMND, the organisation he co-founded in 2015.
Mr Daniher said the event - which sends celebrities sliding into a pool of icy water in the middle of a Melbourne winter - was inspired by the "ice bucket challenge" that went viral on social media in 2014.
In five years FightMND has been able to contribute more than $50 million to research and care initiatives.
In his book, Mr Daniher writes: "I always wanted to make something of my time on this earth, to have my hands on the wheel of life, not just be a car crash waiting to happen. The thing about life is it's short and precious and there's nothing like a terminal illness to reinforce that."
Mr Daniher believes awareness of MND in the general community is growing.
"When I was diagnosed, I didn't know what it was and not many people had heard about it and because of that, there had been little funding," he said.
"There is no treatment and no cure. We established FightMND to raise awareness and we're raising funds for some serious research."
Mr Daniher hopes that his book will help this awareness to continue growing.
"We don't choose grief, or setbacks, or any kind of adversity, but how we deal with these episodes often defines our lives more than how we handle the good times and the successes," he wrote in When All is Said & Done.
"You don't necessarily know it at the time, but you find out what you're made of. You test your beliefs. You build up resilience. You learn to handle the bad and appreciate the good."
