‘Slowly tortured by his brain’: family urges action on head trauma at concussion inquiry

Terry Strong just wanted to put petrol in his car. He stood at the bowser and put the nozzle into the neck of the fuel tank but the pump didn't start. The service station attendant waved him away when he asked for help. He tried again. It still didn't work.

Strong's patience was thin these days. His fuse was short. After a second rebuff - "Just move to another bowser, mate" - Strong, frustrated, got back into the car. But he had forgotten to replace the nozzle. The car accelerated forward, fuel hose still attached, and wrenched the entire bowser out of the ground with a tremendous jolt.

The fire brigade arrived, the fuel station was shut down, and Strong was mortified. A retired Telstra estimator, truck driver, erstwhile rugby league player, father of two and grandfather, Strong had been forgetting things for years. How to turn on the air conditioning. How to make spaghetti bolognese. How to score during his weekly game of golf. His own phone number.

He'd started hallucinating, too. Paranoid outbursts would overtake him suddenly and he would rant and rage, accusing his wife and children of all kinds of crimes. At night, his body didn't seem to understand that it was dreaming and he would thrash about violently, sometimes leaping out of bed to chase down intruders only he could see.

Strong's family told few people about the petrol station episode, hoping to protect his dignity. They didn't talk about the things that happened at night. They didn't speak openly about the startling and profound decline of their beloved husband and father until two weeks ago, when Kathy Strong, Terry's wife, and his son Michael, gave evidence on the first day of public hearings for the commonwealth Senate inquiry into concussions and repeated head trauma in contact sports.

Terry Strong died on 12 December 2021, aged 68. In life, he had been diagnosed with REM sleep behaviour disorder and probable Lewy body dementia. But after his death, an autopsy found the overwhelming pathology was severe chronic traumatic encephalopathy (CTE), the neurodegenerative disease caused by head trauma and linked to the repeated impacts of contact sport.

"My dear, wonderful husband of 44 years became a shell of a man and I watched him being slowly tortured by his brain," Kathy Strong wrote in her submission to the inquiry. "It is time the long term effects of concussion and repeated head trauma are investigated and addressed."

"Dad was a man of action more than a man of words," his son Michael tells Guardian Australia. That didn't mean words weren't important. Terry was painstaking about things like greetings cards, lingering over the messages inside to ensure he perfectly encapsulated what he wanted to say.

His primary medium of communication, though, was sport. Michael remembers his father teaching himself and his brother Mark how to play various sports and avidly watching their games: "A man that was always there and always supporting me as his boy in every endeavour that I undertook."

Terry Strong grew up on a dairy farm in rural New South Wales with five siblings. His primary sport as a young adult was rugby league, from schoolyard teams and the Lismore under-18s and later the Campbelltown City Kangaroos. He played first-grade club football and representative group six football in the 1970s and early 80s. He hopped between clubs depending on where he was working, including stints at regional towns Jamberoo and Hay. He played in a premiership with one team and was a leading try scorer in another, occasionally getting paid to play. His last game was in 1984, aged 31.

"He was really proud of his own achievements," Michael Strong says. "But he had this beautiful humility. He never, ever talked himself up."

Strong was a hard tackler. As an outside centre, he played defensively - a sought-after teammate for those playing inside. In the late 70s, after breaking his jaw playing touch football, he moved to the forward line. Michael believes his father received the hardest knocks there. "It was pretty rough and tumble back then in the 70s, the way they played football," Michael says. "A lot more thuggery happened in those days."

Strong was often concussed, sent back on to the field after smelling salts were waved under his nose. He was also often only paid for the games he won. That provided even more of an incentive to get back into the game, no matter in what condition he'd come off.

The family believes Strong first started to experience cognitive difficulties in his early 50s, even leaving a job he loved because he was having trouble with computers. It wasn't until his 60s, however, that he could no longer hide his issues. He and Kathy sought help after an overseas holiday on which Terry twice found himself outside their hotel in the middle of the night with no idea how he got there.

It was a 60 Minutes documentary about Shane Tuck that got Terry and Kathy thinking about CTE.

"We had a big discussion about his football and his concussions," Kathy said. The sporting concussions weren't his only head injuries: as a kid, Terry had fallen off horses and on at least one occasion, split open his head after a tumble off a shed roof.

The head of Royal Prince Alfred hospital's neuropathology department and executive director of the Australian Sports Brain Bank, Dr Michael Buckland, performed the autopsy on Strong's brain. He says Strong's pathology was complex, showing a lot of overlapping degeneration, but the tau protein deposits that characterise CTE were "everywhere".

All neurodegenerative diseases are difficult to diagnose clinically, but CTE especially. "It's the newest and no one really understands it, and it does seem to have the most diverse range of manifestations," Buckland says.

Strong's cause of death was recorded as advanced Lewy body dementia, but like CTE, Lewy can only be diagnosed definitively after death. Buckland says the pattern and intensity of the Lewy deposits, which were contained only in the brain stem, didn't correlate with Strong's dementia symptoms, which originated from other parts of the brain.

"I would say the CTE was doing all that," Buckland says. "He had a heavy burden of disease, of CTE, and he was only in his 60s. That's certainly not normal at all."

In August 2021 Strong fell off a boating platform and broke his hip. At hospital he was given strong painkillers, which triggered a psychotic episode lasting hours. He was assigned a permanent wardsman while in intensive care and transferred to the geriatric unit at Shoalhaven hospital after two weeks. He was never the same afterwards and, while the family tried to take him home briefly, they realised it was beyond them after an extreme episode late at night saw Terry fashioning a weapon out of a hatstand.

There were still glimpses of the loving family man: the nurses told Kathy that he would walk around the ward with his hands cupped, saying he was carrying her with him, explaining she had made him a better person. But he was deteriorating rapidly. His body started to shut down. He died four months after going into hospital, with his family at his bedside, telling stories about the man he used to be.

The Strongs speak highly of the sleep specialist and the geriatricians who treated Terry, especially during his final months. Since his death, Terry's doctors at Shoalhaven, who see other younger dementia patients with behavioural issues, have started collaborating with the brain bank.

But Kathy also describes the uphill battle in the earlier phases of Terry's disease to find medical practitioners who took his night episodes and aggressive outbursts seriously. And there was little understanding among their social circle about the specifics of Terry's condition.

Terry loved sport. His family say they don't want to take that away from anyone. They decided to speak out about Terry's illness because they didn't want other families to go through what they did. They worry that, by being slow to recognise the science showing the relationship of CTE to contact sport - if they accept it at all - sporting organisations, from amateur to professional, are not fulfilling a duty of care to their players.

In her submission to the inquiry, Kathy Strong argued for greater financial investment in concussion research, saying the government needed to ensure sporting organisations were "responsible and accountable for the welfare of players".

"They have these concussion protocols yet they're not accepting that concussions cause damage to the brain in terms of CTE," Michael says. "Your normal punter at the pub knows that these blokes are getting long-term damage from getting knocked in the head over and over and over again. Why can't we just accept it and come up with a solution?

"Let's just look after people. That's our responsibility to each other as human beings."