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Wally Lewis has revealed his "diary is his best friend" as the rugby league legend, battling short-term memory loss, took his fight against chronic traumatic encephalopathy (CTE) to Parliament House.
The man dubbed "the King" led a delegation of around 20 people to the nation's capital, advocating for funding for CTE education, support and awareness to be included in May's federal budget.
Lewis, wearing a bright orange T-shirt labelled with 'You only get one brain', met with parliamentarians to share his experience after last year being diagnosed with probable CTE.
The 64-year-old played 256 first-grade rugby league games and represented Queensland 38 times.
"I remember first feeling a little concerned … when in that bit of forgetfulness that we all seem to have at some stage in our lives, started to occur with almost monotonous regularity," he said.
It was presenting at Channel Nine in Brisbane, when he felt really embarrassed.
"There was one in particular where I was reading the 6pm news and it was a live read… there was a sound up which came in which showed a little bit of vision and a quote from the person that the story was about.
"And when it came back to me to take up the story again I couldn't remember whether I was just starting the story going after the first paragraph or the second and it was denial," Lewis said.
"I felt that I failed."
Lewis said he visited a specialist in Sydney, after the death and subsequent diagnosis of good friend former Maroons player Paul Green.
"It demanded action not just from myself, but from every rugby league player … I needed to know what I was dealing with … and I was diagnosed with probable CTE," he told the room.
"The symptoms I suffer are mostly short-term memory loss which can play an enormous role in spoiling your everyday life."
"Unaware of what I have scheduled every day I live by my diary, it is my best friend."
Lewis's partner Linda watched on as he spoke on Tuesday, with the diary on her lap.
"I carry it around everywhere with me and I often get asked the question 'What the hell do you carry that thing around for?' And I say, 'Well, that just makes sure that I get through each and every day'.
"Every morning, I sit down with [Linda] and we go through my diary and discuss what's on for the day, the week and the months ahead.
"But by the time I've walked out the door, to leave for work, go down and get in the car. I've often already forgotten two or three things on what I'm supposed to be doing.
"I'm fearful for what my future would look like, so I try not to think too much about it."
The delegation also included representatives from Sydney, Newcastle and Canberra from organisations such as Dementia Australia, the Brain Foundation, the Queensland Brain Institute, the University of Queensland and Dr Rowena Mobbs from the Mater Hospital in Sydney.
Dr Mobbs says as many as 10 per cent of higher-level footballers, with at least 10 years of exposure to their sport, are exposed to CTE.
"Many wrongly perceive that it is concussion that causes CTE, although there is no doubt a component many of my patients will have had at least 100 concussions, and that is 100 or more individual traumatic brain injuries.
"Rather, however, it is the 1000s of sub concussions of equal or higher force that poses the main risk of CTE," Dr Mobbs said.
"This triggers deposits in the brain of toxic proteins, slowly disintegrating neurons and their connections or synapses and their support cells one by one.
"Eventually, these dementia changes spread from the surface areas of the brain to the deeper areas affecting memory, mood and decision making."
A pre-budget submission has been lodged calling for funding to deliver support and a campaign to raise awareness and provide education, specific to protecting Australian children.
"We need to teach the players from the grassroots level the correct way to tackle, the correct place to put their head in a tackle, and to guarantee that it's not in a dangerous position that could cause harmful damage to the intended ball carrier," Lewis said.
"To play the game more safely, we need to train our kids smarter … Certainly commonsense has to be the number one priority. Parents of children playing contact sport also need to understand the risks."
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