AAlex Abbey used to be a trainer, the top of PE, and he nonetheless can be if he may just. He needed to surrender in his early 30s as a result of he began struggling black outs. He had one in a lesson “and the kids all thought I was dead”.
So he sought specialist assist. At first, the docs instructed him he had motor neurone illness and that he ought to head house and get started “making preparations”. After the following spherical of checks they determined it may well be Multiple Sclerosis. He had 4 years of remedy earlier than he discovered it used to be any other misdiagnosis. Finally, he discovered a neurologist who used to be in a position to inform him what used to be incorrect. He has possible Chronic Traumatic Encephalopathy (CTE), possible as a result of it could possibly simplest be recognized definitively postmortem.
This used to be in 2015, 5 years earlier than a gaggle of former skilled rugby gamers, together with Steve Thompson, Michael Lipman and Alix Popham, first printed their very own possible CTE diagnoses within the Guardian. Like them, Abbey used to be a rugby participant, simplest he by no means performed professionally. His accidents intended he by no means were given the chance.
Now, at 48 years previous, he’s one in all a gaggle of greater than 55 novice gamers bringing criminal motion in opposition to the sport’s government, who they accuse of negligence in failing to give protection to them from mind harm. It’s a separate case to the only involving Thompson, Popham, Lipman and greater than 200 pros, even though it’s being arranged via the similar legislation company.
Abbey was once “immersed” in rugby, however hasn’t been within his native membership in years. “I keep getting invited, but I can’t face it to be honest.” He was once there “six days a week”.
He grew up in Warrington, rugby league nation. His father performed professionally and as a child Alex “ate, slept, and breathed it”. He performed union for Newton-le-Willows, league in Warrington and became out for his faculty group. He used to be taking part in open grade membership rugby, in opposition to adults, by the point he used to be 13. Through his teenage years he used to be taking part in 3 video games every week and doing touch coaching nearly on a daily basis in between.
Abbey attempted including all of it up. He says he “probably played 600 games” as a youngster, a lot of them in opposition to males. He can pinpoint 18 concussions, the primary when he used to be 12, the ultimate used to be when he used to be 30 after he’d pop out of retirement to play “with my mates at the bottom of my road”.
Often as no longer, he’d play on. He felt it used to be anticipated of him. “When you got knocked out, they picked you up and poured a bucket of water on your head or put a cold sponge down your back. You woke up and then if you could walk in a straight line you carried on playing.” If you couldn’t walk straight, they’d wait until you could then send you on again.
He was a kid, being “smashed on to the floor, then getting up and going back for more, again and again, and again, then doing it over the next day.” He loved it “because you’re stupid and young and you just keep going and going.”
None of this would be allowed now. But it ought not to have been allowed then. He says it was like the “wild west”. No one kept count of the concussions, no one ever stood him down or suggested he sit out the next match. Usually, he would be playing again the next day. The damages added up. By the time he made it to university he was starting to black out in every contact. “Only I never realized it because it was only for a split second, like an extra long blink.”
Abbey was good, he had trials for the North of England U16s and played with and against men who would go on to become famous players in both codes. Wigan tried to sign him when he was 17, Warrington later asked him to a trial, but his father insisted he go to university and “get a proper job”. So he did.
He gave up playing soon after graduation because of series of bad back and shoulder injuries, went into youth coaching, then became a teacher. He was good at that, too, and was put on the Future Leaders program. But he found he was starting to forget people’s names, that he was becoming inexplicably aggressive and saying inappropriate things to staff and students.
Over the years since, his symptoms got worse. Now his vision comes and goes, his hearing fades in and out, he is doubly incontinent, so his bladder and bowel control is gone. “I walk down the street and I spontaneously urinate. I’ve spontaneously defecated on occasion.”
It’s worst when he’s struggling with an illness or infection – “my brain decides to inflame everything and all my old injuries start aching”. He’s left bedridden. “People think dementia is about forgetting where you are, but with this disease there’s also the physical side of it. Your brain’s not working properly because all the pathways are blocked.”
The future scares him. “My reality is that in 10 more years I’ll be arguing with my loved ones and I won’t even know I’m doing it.” He has a wife, and three children. She has had to give up work to care for him. “I was talking to her about it, she was saying ‘it’s alright for you, you won’t know. But I don’t want it. But we can’t change it.
He is on a course of experimental medication, which he hopes can arrest his decline. “I would do anything to stop myself from getting worse, to be able to go back to work. I’d give anything, it’s that bad. It’s a horrible, horrible disease and I don’t think people appreciate it because they see me walking around.”
Abbey is still a Labor councilor and he is trying to keep his father’s wholesale business going. He says he’s lucky that his parents employed him and had enough money to and keep him “wrapped in cotton wool”. The symptoms come and go, but he describes his overall trajectory as a “jagged slope” downward.
“There are times when I ask myself, ‘What am I doing? Why am I doing this? What do I bring to the table? And yeah, I’ve been suicidal, on a number of occasions, to the point of getting the tablets out to kill myself in the middle of the night. It’s only having a young family and wife that allowed me to talk myself down.”
Abbey knows what some people in the game say; he’s heard it all already. There are plenty of people who still don’t seem to believe what is happening or who blame it on genetics or behavior away from the pitch. It came up again recently, when the England forward Courtney Lawes said: “Generally it’s your genetics which will determine if you get things like dementia and stuff like how much you’re drinking, other recreational things, and how healthy you keep yourself in later life”.
Whoever Lawes has been talking to, maybe he needs to sit down and listen to someone like Abbey. “I didn’t drink. I didn’t take drugs. And I’ve never smoked a cigarette,” Abbey says. “Between the ages of 12 and 21 I would not have under the influence of alcohol greater than a dozen instances. The guys at college used to search out it humorous. I by no means preferred it. I nonetheless should not have alcohol in the home.
He’s basically a Christmas drinker. He does it perhaps part a dozen instances a yr. “So subsequent they are going to say it is simply dangerous good fortune, that it is all hereditary. But we’ve got were given no historical past of dementia within the circle of relatives, on each side.” He says his Dad’s just starting to show signs now he’s 75. “The reality is you’ll be able to’t ascribe the illness to anything than taking part in rugby.”