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Wally Lewis reveals his ‘confidence has been taken away’ as he battles debilitating brain disorder

Apr 24, 2024
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Wally Lewis delivered a heartfelt plea during a recent National Press Club address for greater awareness and support for those afflicted by CTE. Source: Lukas Coch/AAP PHOTOS.

In the annals of rugby league history, few names shine as brightly as Wally Lewis.

The mere mention of his name conjures images of Queensland dominance, leadership prowess, and an unyielding confidence that seemed unstoppable on the field.

However, amidst his battle with the debilitating brain disorder, chronic traumatic encephalopathy (CTE), Lewis now confronts feelings of “fear and embarrassment” on a daily basis as he grapples with the condition.

CTE is the only preventable form of dementia, with estimates suggesting thousands of people are impacted.

Symptoms of CTE include memory loss, confusion, aggression, and depression, with some patients going on to develop motor neuron disease or Parkinson’s disease.

Funding is required for research to better understand CTE, a condition caused by repeated traumatic brain injuries.

Given the thousands that are affected, Lewis delivered a heartfelt plea during a recent National Press Club address for greater awareness and support for those afflicted by CTE, calling for an $18 million government investment in services and education aimed at addressing the challenges posed by the condition.

“It’s a journey marked by the twin shadows of fear and embarrassment, a journey through the fog of dementia and the erosion of my memory,” he said on Tuesday, April 23.

“I once had the confidence in myself to succeed, lead a team to victory, captain my country, remember the strengths and weaknesses of opposition teams, organise myself each and every day and feel well and truly in control of my everyday life.

“Now, much of that confidence has been taken away from me by the effects of probable CTE dementia.

“My call is for the Australian Government to back this cause and provide federal funding for these two initiatives that will start the change and will provide hope for the future. We owe it to our kids.”

The Concussion and CTE Coalition’s Joint Pre-Budget Submission has called for an investment of $18 million across three years to initiate a nationwide pilot program offering support services for individuals affected by CTE.

Additionally, the submission urges the implementation of a comprehensive awareness and education initiative in schools to safeguard the cognitive health of Australian youth.

These initiatives, as highlighted by Maree McCabe AM, CEO of Dementia Australia, stem from the recommendations outlined in the Senate Inquiry Report on “Concussions and repeated head trauma in contact sports”, issued in September 2023.

“Concussion and CTE is not just a sports issue. Many groups are at risk, including domestic and family violence survivors and military personnel,” McCabe said.

“People impacted by CTE tell us that there isn’t enough support. We are calling for government investment to raise awareness of this important issue and support those living with probable CTE, their families and carers.”

Since being diagnosed with CTE, Lewis has consistently chosen transparency, sharing his ongoing battles with the condition.

While addressing a Dementia Australia panel from Parliament House earlier this year, the 64-year-old candidly revealed his challenges, confessing that initially, he grappled with occasional bouts of forgetfulness.

However, these instances soon became a regular recurrence.

“I was a little bit out of sorts, and then the confusion came, and then the denial,” he said.

“My best friends, my workmates … it soon became very obvious by the looks upon their faces.

“I’m fearful for what my future will look like, so I try not to think too much about it.

“We all thought we were 10-feet tall, bulletproof.

“But for most of us, the reality was that it was causing us the extensive long-term damage (and it was) something that we weren’t dealing with.”

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