Wally Lewis on his journey raising awareness of CTE

Written by Carolyn Hiblen for Australian Seniors 

Wally Lewis is an Australian sporting icon. Affectionately dubbed “The King”, he’s a legend of rugby league – there’s even a bronze statue in his likeness guarding the entrance of Brisbane’s Suncorp Stadium. 

Having begun his professional career in the 1970s, the Queenslander went on to captain the Brisbane Broncos and Gold Coast Seagulls, as well as the Maroons. He also represented Australia as the captain of the Kangaroos. An Australian Rugby League Hall of Famer, Sport Australia Hall of Famer and league Immortal, there isn’t much he hasn’t achieved. But it’s what the 65-year-old is doing now that might top it all.

Breaking the silence around CTE and memory loss

From memory loss to diagnosis: Wally’s CTE journey

In April 2023, Wally was diagnosed with probable chronic traumatic encephalopathy (CTE) – a degenerative brain condition caused by repeated head injury that can’t be definitively determined until an autopsy is performed after death. A form of dementia, CTE is incurable. It’s also preventable. 

“I’d been having some issues with my short-term memory, which I found working in the media to be extremely embarrassing, and it certainly was affecting my everyday role as a sports journalist and a newsreader,” Wally tells DARE. “I’d get a simple message through the earpiece and, 60 seconds later, I couldn’t remember what I’d been told.”

Following the shock suicide of his great mate, former rugby league player and Maroons coach Paul Green, whose autopsy revealed one of the most severe forms of CTE, Wally’s interest in the disease “skyrocketed”. 

“My fiancée Lynda [Adams] felt we’d been dealing with more than just old age,” he explains. “I was 63, so there were some in-depth discussions and further research that took place at that stage. We felt the right decision was to see a neurologist specialising in CTE.”

Last year, Wally addressed the National Press Club of Australia, asking the federal government to fund CTE support to help protect and educate Australian children. As a Dementia Australia ambassador, a big part of Wally being so public with his own story is to destigmatise the condition. As someone who was once at the top of his game, he understands how difficult it can be to reach out for help due to the fear and embarrassment of memory loss. 

Memory loss is common in older age. To help prevent it, it might be helpful to try doing these brain stimulator activities.

Wally in his own words

The football legend reflects on the knock-on effect of a lifetime of hard blows

“When the doctors diagnosed me [with epilepsy at age 26], we had a conversation that pretty quickly turned into an argument. I thought they were out to cause damage to the name of rugby league. They tried to advise me that I should stop playing and I remember saying to them, ‘No, I’m not going to stop playing. You can’t guarantee that the epilepsy was caused by the head knocks that I’ve suffered.’ My doctor said, ‘No, I can’t guarantee that epilepsy was caused by the head knocks. But you can’t guarantee that it wasn’t.’ I had to accept that it was the head knocks – nobody else in my family had epilepsy. 

“I thought the epilepsy had brought on a little bit of difficulty with memory at some stages, just through the seizures. The doctors will say there’s a possibility of a slight denial for the brain with the blood flow; your oxygen levels have also been almost attacked. So it was a case of needing to have the best possible information and get on with life and lead it from there.

“Just before I saw [neurologist] Dr Rowena Mobbs, we watched the movie Concussion. And I’m thinking, that’s exactly what I’m dealing with – the embarrassment of not being able to remember things that appear to be the simplest things to deal with in everyday life.

“I’ve never, ever wanted to damage the game. But the number one priority has to be the long-term health of the players. We have to ensure they get the best possible support, and the only way to do that is there should be an enormous amount of emphasis on how to ensure that players put their head in the correct position when they’re effecting a tackle. It’s the emphasis on doing the skills that are an absolute necessity the best way possible, so they don’t make mistakes. 

“There have to be protocols set in place so any player who suffers a head knock is withdrawn from the game immediately. And that’s probably the biggest challenge of all."