Michael Edwards being ‘robbed’ of his rugby memories by early-onset dementia
Edwards is part of a group of 10 launching a legal action against the Rugby Football League
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Your support makes all the difference.As a player, Michael Edwards was fearless. In retirement, the 48-year-old fears the day when he no longer recognises those closest to him.
Edwards, who played for Oldham, Leigh, Swinton and St Helens in a professional career spanning more than a decade in the 1990s and 2000s, was diagnosed with early-onset dementia and probable CTE (chronic traumatic encephalopathy) earlier this month.
Already his playing days are a blur, and he says he has to rely on scrapbooks and old videos to jog his memory.
He is part of a group of 10 former players, which also includes Jason Roach and Bobbie Goulding, who are launching a legal action against the Rugby Football League (RFL) for negligence, claiming the governing body failed to protect them from the risks of concussion.
Edwards acknowledges greater structure, science and regulation have been applied in recent years, but told the PA news agency that was in stark contrast to his own playing days.
“You were treated like a piece of meat,” he said. “It was like the Wild West when you went on those fields sometimes. People would be swinging their arms like windmills.
“I remember playing my first game and half the lads were eight times bigger than me and they all wanted to knock my head off.
“And I thought, ‘This is what I’m going to have to put up with now for so many years.’ There were no regulations in place. But I was a tough b*****, I gave what I got.
“The worst thing about it is you come to enjoy it – you enjoy the pain, you enjoy being out there, you enjoy the blood – it was part and parcel.”
Edwards says the problems with his short-term memory have become “horrendous” and added: “I put my keys down and I won’t find them for an hour, and they’ll be in the microwave or something, or the fridge, and I think, ‘Why would I put them in the fridge?'”
He and his partner run a bar, but his memory has become so poor he has had to hand over all administrative duties.
“I do all the mopping, the general physical stuff,” he said.
Edwards hopes the diagnosis will now enable him to receive targeted treatment and support but is understandably anxious about what the future might hold.
“Being diagnosed with dementia at 48 is hard to swallow really. Because it is not what it is now – it’s 10, 15 years down the line,” he said.
“I might be sat in a care home basically not even knowing who my girlfriend is.
“It’s hard because I want to share [retirement] with her and now I might be robbed of it all. I’m already robbed of most of the memories from when I played rugby – it’s hard to remember most of it, which is hard, because it means a lot to me, just to tell people what I’ve done, the places I’ve been.
“Relaying back to some of the games I did play in, I’ve got to look into my scrapbooks now and videos to give myself a reminder.”
Former Scotland, Swinton and Warrington full-back Roach, 50, has also been diagnosed with early-onset dementia. He started to notice unusual symptoms in his late 30s and early 40s.
“I started repeating myself to my daughter,” he said.
“I told her stuff and she’d say, ‘You’ve told me that.’ It didn’t bother me that much, but it did make me worry. I started to be aware of things not being quite right. It wasn’t a one-off, it was regular.”
He recalls a particularly serious incident from 2012.
“I got in trouble with the police for something I had no clue about, which is the weirdest thing ever,” he said.
“The policeman knocked on the door and said, ‘Seven days ago you crashed your car into the back of somebody and you got out and threatened them.’
“I stood at the door looking absolutely completely amazed, four o’clock in the afternoon, and he said to me, ‘You’re either the best actor in the world or you’ve not done it.’
“They stopped asking me questions, because I had no idea. I had no recollection.”
Roach pleaded guilty in relation to the incident and said from that point on his personality began to change.
“Things like that have made me reclusive,” he said. “It was a frightening situation, I was going, ‘What is happening here?’ I used to be sociable, outgoing, Jack the Lad, funny, the life and soul of the party.
“I would go out on my own, I’d be one of the lads, probably the alpha male in a bunch of alpha males. I’ve now gone to not wanting to do anything, frightened of situations, [staying] within myself, questioning stuff.”
Like Edwards, Roach hopes the action can raise awareness who may be suffering similar symptoms but not be diagnosed.
Their lawyer, Richard Boardman, is working with a group of over 50 players in total and Roach said: “You are going to get a stream of people thinking, ‘That’s me – I didn’t realise that, I just thought I was getting older, grumpy’.”
He says his diagnosis at least explains the symptoms which have built over the last decade, and added: “Something has to have a beginning and for the last so many, how many years, there’s been nothing – there’s been people like me going to the doctors, getting no help, not knowing what it is.
“But this now can be a beginning, and put structure in place, that people can go to and look to. Obviously money is not a thing if you’ve got no memories and can’t do many things. What you need is somebody to say, ‘Here, do this, prolong stuff’.
“I’ve struggled for 10 years and got to here now. Hopefully people, when they realise, might only have to wait six months, 12 months – they can be on a good pathway from very early on, and the earlier you start to find things, you can fix things better.”