Wally Lewis opens up on daily battles with dementia after shock diagnosis two years ago

Rugby league icon Wally Lewis has opened up about his struggles with probable CTE two years after his diagnosis, revealing the impact on his daily life while vowing to regain control.

NRL legend Wally Lewis next to his iconic statue at Suncorp Stadium. Picture: Tara Croser.

Rugby league legend Wally Lewis has opened up about his struggles with probable chronic traumatic encephalopathy (CTE), two years after his diagnosis, revealing the devastating impact of dementia on his daily life — but vowing to regain control.

Speaking following the federal government’s announcement of a $12.5 million funding boost for dementia support, the Queensland icon, 65, shared how the condition has turned simple conversations into an “embarrassment.”

“The easiest way to describe it (handling dementia) is I (lose my train of thought), and how I go into conversations in everyday life (has changed),” he said.

“It’s brought forward as being something that’s almost comical now, and I think that for me is a real pressure release.

“Living with the big D [dementia] is a journey that many find challenging, not only due to the cognitive changes, but also because of the emotional impact that it has on one’s sense of self confidence and their independence.”

Despite the challenges, the eight-time Origin-winning captain is determined to push past his diagnosis.

“I want to be able to get over it. I want to be able to control my everyday life, and certainly the memory plays an enormous role in that,” he said.

Wally Lewis playing for Queensland in 1982.

CTE, a form of dementia linked to repeated head injuries, is associated with memory loss, personality changes, and cognitive decline.

Lewis was diagnosed with suspected CTE in 2023, following a career that saw him play 256 first-grade games and represent Queensland 38 times.

The federal funding, announced by Sports Minister Anika Wells on Friday, will be directed to Dementia Australia to establish a national pilot program supporting Australians living with CTE.

It will also fund an education campaign in schools aimed at protecting young athletes from head trauma.

NRL legend Wally Lewis with fiance Lynda Adams. Picture: Tara Croser.

Lewis, who last year campaigned for an $18 million investment into CTE research and education, welcomed the initiative, though Dementia Australia CEO Tanya Buchanan stressed the need for continued funding.

“I think it is fair to say that dementia Australia is advocating very strongly for an ongoing investment in a national discussion around brain health,” she said.

“That’s something that we’ll continue to prosecute for as long as it takes until all Australians understand that there are things we can do to reduce our risk of dementia.”

Lewis also reflected on how attitudes toward concussion have shifted in sport, recalling a time when playing through head knocks was seen as a badge of honour.

“That used to be judged as a wonderful display from a tough footy player. That’s not common sense in the current day terms,” he said.

“The particular bodies of sport have now insisted that honesty be displayed out in the football field, for that player’s long term future.”

NRL legend Wally Lewis. Picture: Tara Croser.

Determined to fight back against CTE’s effects, Lewis remains hopeful that increased awareness and support will not only help those currently battling the condition but also safeguard future generations of athletes.

“We all know that good brain health is absolutely essential in our everyday. We only get one brain it is our responsibility to ensure that education and awareness is available to all Australians,” he said.

“And today we can begin to work towards a future where our lives are no longer impacted by the big CTE again.”

Originally published as Wally Lewis opens up on daily battles with dementia after shock diagnosis two years ago