National Press Club of Australia Address by Wally Lewis AM
“Living with probable CTE and my hopes for change”
I would like to thank the National Press Club for hosting us today. It is an honour and a privilege to be here.
I pay my respects as today we are joining you all on Ngunnawal and Ngambri Country. I begin by acknowledging the traditional owners of the land on which we are meeting and pay my respects to their elders past and present, and to our shared futures.
I acknowledge all who are here supporting me today.
Merran Kelsall AO, Chair Dementia Australia.
Maree McCabe AO, CEO of Dementia Australia and other members of the Concussion and CTE Coalition –
Dr Rowena Mobbs from Mater Hospital Sydney,
Dr Fatima Nasrallah, Queensland Brain Institute, University of Queensland,
Kayleen Doyle from Connecters Australia.
An apology is Carl Cincinatto from the Brain Foundation.
I am so pleased to welcome and acknowledge recently retired AFL Player, Nathan Murphy and his partner Roseanna Meech who have come to support me and the Coalition. I really appreciate you standing with me today Nathan. We only reached out on Thursday night and here you are! It is a true testament of how important this cause is to you.
We have Dementia Australia Board members, a former Board member, my fellow Ambassador Pat Welsh, Dennis Frost, Vice-Chair of the Dementia Australia Advisory Committee and Michael Lye, Deputy Secretary of Aging and Aged Care, Department of Health and Aged Care.
As well as key sector CEOs, Dementia Australia supporters and staff. Thank you to you all for making this possible today.
And to my sports and media colleagues I acknowledge you. Thank you for coming and demonstrating your interest and commitment to helping me raise awareness about CTE.
I am here today because I am living with probable CTE – chronic traumatic encephalopathy – a type of dementia associated with repeated head injuries, concussions or subconcussions.
By the end of my talk, I want you to understand not only what I’m going through, and what my loved ones are going through, but what everyday Australians who are living with probable CTE around the country are going through.
As Wally Lewis I have influence – I have a platform – and I intend to use it at every opportunity to bring about change for all Australians like me who are impacted by CTE and to do whatever I can to protect the brains of Australian children from CTE.
We can do that – with the right protocols, awareness and support - CTE is preventable. To all the leaders in this room and watching via the broadcast – and to all the media in the room – we can make that happen – we can truly create a future where our children will not have to fear CTE.
Because the fear is real - I don’t want anyone to have to live with the fear and anxiety that I live with every day – worried about what I’ve forgotten – not even knowing what it is I’ve forgotten – the fear of what my future will look like, and living with the constant fear and anxiety that I’ll let people down – the people who all my life have been able to rely on me and looked to me for my strength and leadership – my loved ones, friends, colleagues and fans.
In my footy days, I had the confidence to know what I had to do to succeed. From the day I was born, my life was all about rugby league. My Dad was a former player who also later coached at the highest level with Wynnum Manly. This is where I learnt everything about the game, as I accompanied him to almost every training session. In particular, learned how to perfect the skills of the game that were necessary to make me different from the others.
With each and every game, I would be judged by my Dad NOT only on how well I played but also on how many mistakes I made. It was all about reducing the number of errors – perfecting my game – and as hard as my Dad's judgement could be, it was the way to get better. From my early 20s, I was known as a player who had an ability for what's known as 'reading the play'.
Reading the game in rugby league is a skill that not a lot of players are fortunate to have. It helps create opportunities during the most challenging times throughout the game. It involves a deep understanding of the tactics of the game that are about to take place and where those opportunities lie. In attack, it recognises the opportunities that could be the difference between winning and losing – while in defence, it's the realisation of where the opposition has a strong chance of scoring a try. Simply, it's the ability to anticipate the opposition's moves – to predict who and where they intend to target.
Game reading also involves understanding the flow of the match and the momentum shifts that can occur throughout. A skilled 'game reader' will also sense:
1 When it's time to slow the game down as the opposition appears to be taking control.
2 When it's time to increase the speed of the game when the opposition is struggling to remain in control.
3 When to play conservatively.
4 Who to target in the opposition's defensive line.
5 When and where it's necessary to take risks.
Restricting the opposition's attacking chances can also provide valuable information. It often forces their key playmakers to rely on the attacking plays they depend on the most - where and when they feel most comfortable to strike… which plays appear to provide a massive confidence boost in times of need… and just as importantly, plays that can shatter the confidence of their opposition.
It's not just the strength of your teammates that plays a vital role in the preparation for each game. The value of your opposition must always be respected and can never be ignored.
Before each game, I tried to assess the strengths of my opposing players and search for any weaknesses or current troubles they may be experiencing. If those opponents were right-handed, I would usually target their left shoulder… (run at the weaker side). It didn't always work, but usually, there was a distinct weakness in the non-preferred side. I kept these sorts of things in my memory and relied on them during difficult times.
A player with excellent game-reading abilities will also have a strong tactical mind and be able to process information quickly while having the confidence to back their decisions.
Many of these strengths also play a role in everyday life.
Sadly, I've lost many of these strengths, and it’s getting worse over time.
I once had the confidence in myself to succeed – lead my team to victory, Captain my country, remember the strengths and weaknesses of my opposition, organise myself and feel in control of my life.
Now, much of that confidence has been taken away from me by the effects of Probable CTE Dementia.
My everyday life is no longer blessed by confidence in my daily activities. Now, I struggle to accept that it has been filled with fear and embarrassment about how forgetful I've become.
At times, I have driven off to work to fill a role for the Channel 9 News, when suddenly I would realise, I had no idea where I was supposed to be going or what I was supposed to be doing.
On several occasions, I would get into my car and drive to my workplace at the Former Origin Greats Headquarters opposite Suncorp Stadium – before becoming aware that I was supposed to be attending a training session for the Brisbane Broncos. It certainly made me stretch the list of excuses to an all-time high.
On other occasions, it wasn't until after I had driven up Mount Coot-tha and arrived at Channel 9 that I realised I was scheduled to be somewhere else.
Because of my memory loss, I have no option but carry my diary with me everywhere I go… it has become my best friend. I rely upon it as a gentle reminder of what I need to accomplish each day. It also alleviates my anxiety.
Fear is something most footballers face. We fear losing a game. We fear letting our teammates and our supporters down. We have a fear of letting ourselves down… and I have lived with the fear of failure throughout my football and television career.
Health-wise, I have lived with fear much of my life. For over 30 years, it was the fear of having an epileptic fit – or a seizure - until I underwent brain surgery in 2007 to remove a part of my left temporal lobe at the Austin Hospital in Melbourne.
Not having to deal with Epilepsy any longer left me thrilled and no longer fearful… but a decade later, Epilepsy was gradually being replaced by CTE.
Memory troubles seemed to be occurring much more regularly for me. During my guest speaking roles for sporting clubs or fund-raising lunches, I felt I was repeating myself or making mistakes, although most people probably thought, 'He's just another former footy player who has had too much to drink,'… but the fears started to snowball.
I feared I was going to let my employers down and feared I was going to let myself down.
I live with the embarrassment of not remembering some of the conversations I've just had, where I'm supposed to be, or what I'm supposed to be doing when I get there.
I am here today to speak of a journey marked by the twin shadows of fear and embarrassment - a journey through the fog of dementia and the erosion of my memory.
Imagine a life where the tapestry of memories that define your very essence begins to unravel. The threads of names, faces, and cherished moments slip away, leaving behind a canvas of uncertainty. This is my reality and the reality for ALL THOSE living with dementia.
Living with dementia is a journey that many find challenging, not only due to the cognitive changes but also because of the emotional impact it has on one's sense of self, confidence and independence.
Fear is an ever-present companion on this journey. It is the fear of the unknown, of losing the ability to recognise the faces of those I hold dear, of misplacing the narrative of my own life.
It is a fear that tightens its grip with every forgotten word, every lost step on the familiar paths I once tread with confidence.
Embarrassment, too, is a constant adversary. It stems from my vulnerability when the simplest of tasks become Herculean challenges. It is the red flush of shame that spreads across my face when I stand in the middle of a room, unable to recall why I just entered.
It is the silent retreat from social gatherings where the fear of exposure keeps me imprisoned within my own mind.
However, in a very different way, I am a much more confident man now.
I have the confidence and strength to share about my vulnerability because I want this to change for others coming after me. And thanks to the support and unconditional love I receive every day from my partner, Lynda, I can do this. She has been a tower of strength – and I am determined to repay her with constant displays of confidence and hope, every day.
In 2018, the Australian Sports Brain Bank was established to facilitate neuropathological research into brain diseases associated with sports-related head trauma, including CTE.
These efforts are ongoing and crucial, as we all hope to learn and understand more about changes underlying CTE.
Paired with this is the need for more focus on clinical research during life, so that biomarkers can be developed, earlier detection can occur, and earlier medical and other supports can be available.
This is the aim of the Australian CTE Biobank led by Dr Rowena Mobbs.
Dr Mobbs, is the neurologist who diagnosed me with probable CTE, and Maree McCabe AM, outgoing CEO of Dementia Australia, the peak body for people living with dementia, their families and carers, are here today to later answer questions about the clinical aspects of probable CTE and our pre-budget submission, but in a nutshell:
CTE is a form of dementia.
CTE can affect people in their 30s through to their 60s and beyond, or, as one case in the US identified, began its processes in the brain as young as 17 years of age in one NFL player.
Dementia is the term used to describe the symptoms of a large group of complex neurocognitive conditions which cause progressive decline in a person’s functioning.
Dementia is not just memory loss - symptoms can also include changes in speech, reasoning, visual, spatial and sensory abilities, emotional responses, social skills and physical functioning. There are many types of dementia, including Alzheimer’s disease, vascular dementia, frontotemporal dementia and Lewy body disease.
As with all forms of dementia, CTE affects individuals differently, but there are common symptoms that many people experience. These symptoms often develop over years or even decades after the initial head injuries have occurred and can progress over time.
Symptoms impact cognition, behaviour, moods and motor skills and sadly some people also go on to develop motor neurone disease or Parkinson’s disease in association with CTE.
And while CTE cannot be slowed, let alone cured, symptoms can be controlled using medication and non-pharmacological approaches.
If there is anyone out there thinking, ‘what’s the point in reaching out for support?’ The point is this - it might just save your life, and at the very least improve your quality of life with positive impacts to those around you.
Please don't just sit on it or think there's nothing that can be done.
If this is you or someone you know I urge you to contact the 24/7 National Dementia Helpline 1800 100 500 or visit demntia.org.au.
We need to accept that repeated head knocks can cause brain damage and we need to work together to implement nationally consistent protocols to attempt to prevent, detect and monitor head injuries in all sports.
We need to teach the players from the grassroots level the correct way to tackle…the correct place to put your head… and to guarantee that it’s not in a dangerous position that could cause harmful damage to the ball carrier. To play the game more safely, we need to train our kids smarter and that doesn’t stop after they play their first game or complete their first season. It’s not a badge of honour to prove how tough we are by staying out on the field when we are injured. Consistency across all sports at all levels and…common sense is vital.
Parents of kids playing contact sport also need to understand the risks. The players, as they get older, need to be educated on the risks. Players need to understand that just because you can’t always see it, like a broken arm, a brain injury needs to be taken seriously. It’s not a badge of honour to go back out on the field with a head injury – it’s careless.
I think we have come a long way since back when I played. I love my sport and I wouldn’t change a thing, but we do need to change things and provide hope for the future.
We may not know for many years if the new protocols that are being put in place today will help prevent the possibility of brain damage. But we need to do everything we can to learn more about prevention, and we also need to support much needed research, so we can better understand CTE.
The Concussion and CTE Coalition is a partnership between Dementia Australia, The Brain Foundation, Connecters Australia, the Queensland Brain Institute at the University of Queensland, and Dr Rowena Mobbs. They have joined forces to lead the way on CTE risk reduction and support.
As an ambassador for both Connecters Australia and Dementia Australia, I am proudly part of this Coalition.
So my call to action for the federal government is – to back this cause.
Provide the federal funding we are calling for, for the two initiatives that will start the change and will provide hope for the future.
The first is to develop a pilot program of support for people and families impacted by CTE modelled on the Concussion Connect Support Group.
Concussion Connect started in Sydney and is a model that needs to be expanded to offer hope and support to Australians impacted everywhere.
This is an extraordinary group therapy program that has been totally life changing for its participants. It welcomes people at risk as well as those diagnosed with probable CTE. The Program is also part of a current research program into CTE.
It reaches and includes the patient and their carers, guided by neurological and psychological advice, offering research and connecting people to relevant local care and support services.
Once participants start to share, discuss their experiences, issues and challenges it empowers them to be vulnerable, to feel safe and to have hope.
At our recent Parliamentary Friends of Dementia event in Parliament House, one panel member bravely shared that he had been suicidal until he found Concussion Connect and that it had saved his life.
Concussion Connect provides hope and I want others to know there is hope.
By ‘others’ mentioned here, I need to highlight that a diagnosis of probable CTE is not confined solely to professional sports people.
Many who have probably CTE have been amateur footy players who didn’t have the honour to represent their country nor the trimmings that come with it. They are beloved mates, dedicated weekend warriors who simply love the game. These are players, who, years after their footy days, experience cognitive decline, such that they struggle to keep a job, struggle in their relationships, and struggle to see a bright future.
We also know that victims of domestic violence suffer repeated head trauma, and as a result – can develop CTE.
And our fine servicemen and women also experience brain injuries through exposure to blast, artillery, and vehicle related impacts, such as in tanks, or parachuting landing impacts.
Regardless of how someone has developed CTE, knowing you’re not alone – knowing you can meet and talk to others in the same situation, is truly lifesaving. As I said, I have Lynda, a fabulous support network and the means to live as well as I possibly can – but not everyone has that support.
The Concussion and CTE Coalition is also calling for the federal government on Budget Night next month, to fund a national CTE education and awareness raising program.
And the reality is – to do this well – to have an impact – to genuinely commit to saving the brains of our children from future CTE – it needs serious funding and the Senate Inquiry into Concussions and repeated head trauma in contact sports recommended it.
If funded, the Coalition will develop an evidence-based program to be delivered in schools across the country.
It will be vibrant, engaging, and empowering and will provide the support schools and communities need to have impact. They can’t do it alone.
Governments around the country for many years have committed to mental health and well-being programs in schools. Just as schools these days have vegetable gardens and share nutrition and physical activity information, schools also need to be supported to have healthy brain programs.
The program will educate and raise awareness among teachers, parents, and school children about the importance of protecting their brains while participating in sports.
We all know good brain health is essential to help all Australians to thrive and perform in all aspects of life.
It will empower teachers, parents and children with knowledge and lifelong skills to make informed decisions regarding brain safety, reducing the risk of sports-related brain injuries, and promoting overall brain health awareness raising.
Schools will be supported to develop their own Brain Health Action Plan to be tailored to their local capacity. The logging and sharing of these Action Plans will encourage school-to-school learning and sharing these outcomes will assist with evaluating the impact of the program.
Digital resources will be developed and made accessible via a dedicated website to enable teachers, volunteer parents, and students to gain vital knowledge, deliver workshops, and presentations. This also ensures the program will reach ALL schools, including regional, rural, and remote areas.
The proposal includes establishing an annual calendar day, or, week of action with a brain health focus.
While the focus of the program would be on sports, all audiences would be exposed to brain health messaging to empower and inspire a lifelong approach to brain health.
I’m so excited by the potential this program offers, and I’ll be a part of it – along with other players from all sports – by getting out to the schools – to as many as possible – to talk to the teachers, parents and kids in all different communities, and encourage them to get on board.
Along with the delivery of this program will come an expectation, especially from parents with kids in sport, that sufficient actions are now being taken to protect their children. It’s our duty to do this and get it right.
I can’t say it enough – IT IS preventable. We owe it to our kids!
As a footy player, I took to the field every week determined to succeed and willing to take on the toughest opponent in every game and with no consideration of failure. Now, although I face an opponent I know little about, I remain determined to chalk up another win and enjoy life every day. I do not seek sympathy, just understanding for myself and anyone involved in their own personal health battle.
And to do whatever I can to make a difference to the lives of people impacted now by CTE and prevent it as much as possible in the future.
Sadly, we don't know what we don't know - but knowing allows us to understand what we are dealing with. And when we know what we are dealing with, we CAN deal with it.
One thing we DO know is that this is the only form of dementia that is preventable, and we only get one brain.
With continued research and education, we can limit the number of Australians who will sadly go through the debilitating symptoms of this insidious disease.
So, to the government – and to all parties and cross-benchers – I call on you to act - let's start today and tackle CTE head-on.
Thank you.
