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Royce reveals plans for Big Walk fundraiser after dementia diagnosis

Panthers legend Royce Simmons has revealed he has been diagnosed as suffering Alzheimer’s disease but the 1991 premiership hero is determined to use news of his plight to enhance the lives of others rather than his own, with a fundraising walk from his home town of Gooloogong to Penrith in May. 

For a man whose memory is no longer his best friend, the moment Royce Simmons knew all was not right inside his head remains vivid in his mind.

‘Simmo' and wife of 40 years, Liane, had just arrived at seaside Kiama just south of Wollongong for a weekend away. Royce sat in the passenger seat with his left arm in a sling after a shoulder replacement as Liane walked to the cabin door with a bottle of wine and a bag of ice.

Royce said to her, “When did you buy that?” Liane looked around, astonished, and replied, “We just stopped at the bottle shop; you sat in the car and watched me do it.” Simmons thought his wife “was talking the mickey” but she assured him she was serious.

With that, the seemingly unconquerable Panthers legend decided he better have his brain checked. Weeks later he was summoned by neurologist Dr Craig Presgrave to discuss the results of a series of scans that had been conducted at his Kingswood clinic.

“The doctor said, ‘You told me you’d had a few concussions over the years; there are a couple of white marks which may have been from the concussions', and I’m thinking, ‘That’s good; just a couple of marks from concussions’," Simmons said.

Royce Simmons with wife Liane.
Royce Simmons with wife Liane. ©Royce Simmons

“Then he pointed to another part of the brain and said, ‘Around here, that’s all Alzheimer’s’. It was like someone had knocked me off my feet. The rest of the appointment is just a blur; I was so shocked, even though in the back of my mind I was worried something might show up.

“One of my first questions was, “Well how long before I won’t even know my family.”

Simmons is obviously aware that some may jump to conclusions and directly link his condition with concussions he suffered during his playing career but he says he has been given no evidence about the specific cause of his dementia.

And that’s the most pertinent point of Simmons going public with his condition. The cause, he says, is inconsequential.

What matters most to Simmons is shining a light on the impact of the insidious disease, particularly on the loved ones of those who are diagnosed.

He wants to use his plight to bring dementia into the public consciousness and raise much-needed funds for important research into the disease.

And that’s why he and Leanne, with the support of Panthers, Dementia Australia and other partners, have organised the inaugural Royce's Big Walk fundraising event.

Simmons plans to walk almost 300 kilometres from his home town of Gooloogong to the place in Penrith where his footy dreams were realised, now called BlueBet Stadium.

Royce Simmons is chaired from the field after the 1991 grand final.
Royce Simmons is chaired from the field after the 1991 grand final. ©NRL Photos

The walk will depart Gooloogong on Tuesday May 17 and Simmons will cross the finish line ahead of kick-off in the Panthers NRL game against the Cowboys on Friday May 27.

The Panthers legend and several high profile supporters (who will walk with him) will conduct fundraising initiatives and hold events to support junior rugby league along the route.

Uppermost in Simmons’ mind since he received his medical prognosis has been his desire to be, as his condition worsens, a burden on others for as little – in magnitude and duration – as he can.

And to do what has become second nature to the boy from the small town near Cowra, where his father was the local butcher – to enhance the lives of others.

Put the focus on them, not him.

Grand Finals Moments: 1991 Royce Simmons Try

When Simmons drove home from that appointment with Dr Presgrave in June last year, he broke down as soon as he walked in the door of their apartment in the Penrith retirement village named The Royce (yes, after him).

“I walked through the door, looked at Liane and just sort of lost it,” he recalled.

“But, just like I thought she’d be, Liane has been really strong and really supportive. She’s been wonderful, keeping me in check with my routine without ever being over the top.

“I told our kids next, which was hard obviously. That’s a big thing for me; I’m more worried about the people who look after me. I don’t want Leanne wasting ten to fifteen years of her life because of my condition, or the kids coming to see me and feeling down because of what I’m like.

“It’s that sort of condition; you have all the stats about people who suffer from dementia or die from it but you’ve got to multiply that by 10 or 20 people who suffer as well alongside them.

“I want to help raise money for research as a mark of respect for the medical people who have worked so hard find a cure or a successful treatment and all those people who suffer watching a loved one go down the path of losing who they once were.”

Simmons’ other request is for people, now they know his situation, to treat him no differently than before.

“If they’re used to abusing me or taking the piss out of me, please keep doing it,” he laughed. “I’ve still got the capability of biting back, don’t worry.”

He had told only some of those closest to him, thinking it was best to put the seed in different 'pockets’ of his groups of footy mates and family or business friends.

He takes medication daily and has followed medical advice and kept his life as routine and active as it had been, albeit dropping his alcohol intake and increasing his daily exercise.

Royce Simmons played 10 Tests for Australia between 1986-87.
Royce Simmons played 10 Tests for Australia between 1986-87.

He has fortunately deteriorated little, if at all, in the past 12 months (he is due for an assessment soon) and the biggest impact on his daily life is navigating a long conversation that might have gone off on a tangent and returning to the centre of discussion.

The only person at Panthers, where he has been employed in the commercial area for several years, Simmons initially confided in was CEO Brian Fletcher and they agreed to alter his role at the club from coordinating their Captain’s Club, which involved regular trips away with sponsors, to an ambassador’s role which still includes corporate servicing, assisting former teammate Jim Jones with recruitment and helping with licensed club promotions.

The once regular 10km runs and gym sessions have more recently been replaced by long walks, sometimes with groups of friends and Leanne, often 15 to 20km a day. And that’s where the idea of a long distance fundraising sojourn was born.

“Walking is really good for me and if I could get some people who have been successful in life to do different legs with me and share stories, it will help even more,” said Simmons.

“And if we can get sponsorship support and do some talking gigs along the route, it could help raise money for junior footy and dementia research and that’s even more important to me.”

It’s like when Simmo announced to devoted Panthers fans after winning the 1991 premiership, Penrith’s first title in the last of his of his 237 first-grade games for the club, that he would “have a beer with every one of you.”

It wasn’t a pledge to get as drunk as he could but his way of recognising the men and women on the street who had also played a part in the team’s success. That’s Simmo.

Now, Royce Simmons wants to – as long as he is able – recognise the support of those who are by the side of many who are enduring a not so glorious journey. It’s just that he’ll be drinking schooners of light beer this time.

You can support one of rugby league’s favourite characters and toughest competitors by donating now to Royce's Big Walk, with more details about the event to be confirmed over the coming weeks.

With thanks to Neil Cadigan and Penrith Panthers

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