The rugby players getting dementia in their 40s
Why top players believe the game they loved is causing great suffering...
AT THEIR summer wedding last year, Alix and Mel Popham both wanted a little joke written into their vows. ‘We said that in our relationship, I’m coach and he’s captain — because that’s how we’ve always worked, as a team,’ Mel recalls.
Neither could have envisaged on that happy
June day just how much, and under what terrible circumstances, that teamwork would be tested — even though former Welsh international rugby player Alix had already started to show worrying personality changes.
There had been bouts of forgetfulness and irritability, not to mention flashes of rage — at one point he had torn the bannister from the staircase in their home — that were entirely inconsistent with the laidback and loving man Mel had fallen for, head over heels, four years earlier.
It worried both of them, but they put it down to the stress of juggling the care of their oneyear-old daughter Darcey with their demanding professional commitments, among them the pressure of building a new property and events business. ‘In the weeks after the wedding, we did have some emotional conversations,’ Mel, a partner in a recruitment company admits now.
‘There were tearful moments when Alix had broken down and said: “What’s going on? What’s happening to my head now? I’m scared?” And hearing your big, strong 6ft 4in husband saying those words is horrible.’
It would take several more months before those worries were given a name.
After many brain scans and medical investigations, in April this year, the couple were given the devastating news that, at just 41, Alix had traumatic brain injury and early onset dementia.
It was a shattering diagnosis, worsened by the knowledge that the roots of it lay in the 13-year professional rugby career which Alix loved and had worked towards since he was a child. A career which has left him facing the prospect of being unable to walk his three daughters — Holly, 16, and Isobel, 12, from his first marriage, alongside two-year-old Darcey — down the aisle in future due to the cruel effects of the condition.
Inevitably, it has left a bewildering aftermath as the couple privately tried come to terms with what it means for their future.
Earlier this month, however, they went public after it emerged that, together with seven other former rugby internationals — including ex-hooker Steve Thompson, 42, and former flanker Michael Lipman, 40 — Alix is planning legal action for negligence against the English rugby authorities. He is also pushing for a number of changes to ensure the sport he still loves is safer for future generations.
‘I was really in two minds; it felt very exposing,’ says Mel of the decision to speak out. ‘But now it’s out there and everybody knows. It’s so important we are talking about this.’
It’s the reason they are doing this interview today — one during which it’s very clear that the teamwork they spoke of during those wedding vows is as strong as ever.
Cuddled together as they chat over Zoom from their South Wales home, Mel is on hand to give her husband the occasional memory prompt, although he remains articulate during our chat. There are a lot of laughs among the occasional tears, too.
‘We are determined to get something good out of every day,’ says Mel, 41.
Although only recently married, the couple have known each other since they were children growing up in Newport, Wales. However, their friendship only blossomed into a relationship five years ago following HAVING Alix’s divorce from first wife Jo.
reconnected on social media, the pair found themselves at the same networking event and, as Mel puts it, ‘that was that’. Herself newly separated and living in London, she had been on the verge of moving to New York for work but abandoned her plans.
‘I wasn’t looking for a new relationship. But then, a week in, Alix turned round and said: “Please don’t move to New York.’’
‘I phoned my dad and said: “You’re not going to believe this, Dad...’’
And he told me that, yes, he could — and, by the way, he said: “I think you’re going to marry him.”
‘He’d always thought Alix was wonderful. And the rest is history.’
By the time they got together, Alix had been retired from professional rugby for four years following a career which saw him win 33 caps for Wales. He’d started playing aged four in a game where the mantra at the time was tackle — and tackle hard.
‘That’s changed now, but we were told as kids that if you went into a tackle at 90 per cent, you could get injured, so I was always 100 per cent in everything that I did,’ he says.
Few would dispute that. Over the course of his career, Popham was known for his blockbusting tackles. Not that he can recall them now. ‘There’s large chunks of my career I don’t remember at all,’ he says.
He cannot, for instance, remember the 2003 test game against South Africa in which he was knocked out cold, and was filmed fitting on the pitch having swallowed his tongue.
‘I woke up in hospital and I still can’t remember anything about being in that stadium,’ he says.
Yet, only now does he know that it is not just these huge headline injuries, but the countless ‘subconcussions’ which prove collectively devastating to the brain.
‘What I didn’t know until this year is that 90 per cent of concussions happen when you don’t black out — and every day most contact sessions you would get one hit that made you dizzy,’ he says.
One consultant estimated that Alex had had an astonishing 100,000 sub-concussions over the course of his time as a professional.
‘How he described it is that each contact is a sub-concussion and it’s like a drip of a leaking tap,’ Alix explains. ‘So, a tap dripping once or twice on a piece of mud doesn’t leave a mark at the end of the day, but if you have that dripping for 14 years, there’d be a big hole. And, unfortunately, that’s what’s happened to me and a lot of other boys.’
Of course, none of this had ever remotely crossed his mind while playing during an era of, as he puts it, ‘smelling salts and shrug it off ’.
‘You knew your body was going to be sore when you retired because you’d see ex-players with bad knees, walking hunched over,’ he says. ‘But you didn’t know your brain was going to be affected.’
So when a shoulder injury forced his 2011 retirement, he was excited about a fresh start.
‘I just thought I’d had an amazing career and I’d been lucky — there were some boys who were 22 and they often couldn’t play again.’
He set up his own business, turning sporting stadiums into professional working spaces, l aunching the venture the week his daughter Darcey was born in July 2018.
But, as 2019 dawned, Mel started to notice Alix behaving oddly. He’d forget names, slam doors.
‘We’d have a conversation about something and 20 minutes later he’d have forgotten it. Or he’d go to the shops and not come back with what he was supposed to get,’ she recalls.
‘We’d have these huge rows that he then couldn’t remember.
‘At one point I thought he was going deaf as he couldn’t have a conversation with me if the television was on, although his hearing’s perfect. We now know that’s a part of his brain that’s damaged.’
Mel put the symptoms he was displaying down to the stress of juggling work and a young family. Alix admits he was trying to put what was happening to the back of his mind.
Matters came to a head towards the end of August 2019 when Alix forgot he had put the grill on, resulting in a small kitchen fire.
Then, a week later, he found himself completely lost on a cycle ride on a familiar route. ‘I had to use an app on my phone to navigate back home to Newport,’ he says.
The next day, at Mel’s insistence, Alix went to visit his GP, who sent him for an MRI scan — the first of many.
‘By then, my biggest fear was a brain tumour,’ says Mel. ‘So when t he f i r s t MRI s howed t here wasn’t one, there was a degree of relief. At the same time, we needed an explanation.’
After a final neurological scan in London before the lockdown started in March, it was on April 16 — D-Day as it is now known to them — the couple finally got their answer via a phone call.
‘They’d asked us to be together and we were on speakerphone,’ Mel says. ‘They said: “Are you sitting down? We need to be very honest, it’s not good news.”
‘I remember I was holding Al’s hand, shaking,’ says Mel. ‘And it just completely floored me. Dementia had never crossed my mind as, to me, it was an old person’s illness.
‘I ran to our downstairs bathroom to be physically sick. I’m a pretty tough cookie but it just hit me like a ten-ton truck.’
The shock and bewilderment were enhanced by the enforced isolation of lockdown. ‘We couldn’t see my family, we couldn’t see Al’s family and we were just with our beautiful little girl. All I could think of was that she was only two,’ says Mel.
Alix’s first thought was also for his family. ‘In that first instant, I wasn’t thinking about me. I was thinking about Mel, my three girls and how I didn’t — and don’t — want to be a burden,’ he says.
While Darcey was too young to understand, the couple faced the heartbreak of telling Alix’s older daughters, to whom both are extremely close. It was a conversation that Mel role-played with help f rom someone who had been through a similar situation, in an effort to get it right.
‘We wanted to be honest with them but we were determined to talk to them positively,’ she says.
That conversation featured ‘lots of tears and lots of hugs’, says Mel, who breaks down as she recalls it.
‘I’ve sat in really tough board meetings. I’ve had to sack people and have a lot of tough conversations, but that talk with Holly and Isobel was probably the hardest I have ever had,’ she says,
Alix’s diagnosis also brought an end to their dreams of a sibling for Darcey, a decision given added poignancy by Mel’s revelation that she lost Darcey’s twin in utero.
‘That was really hard,’ says Mel quietly. ‘I’d also had a miscarriage just before Darcey, so we were so overjoyed for her to arrive. I’m one of four siblings and Al’s one of three, so we are from big families.
‘We had planned to have another baby this summer, but we talked long and hard about it. It’s the right decision but it’s been tough.’
Their focus now is on trying to make the future as bright as possible. They are setting up their own foundation to highlight awareness, as well as campaigning for compulsory changes — among them an annual mandatory health check for players, and to limit contact training — in the sport they both love. Alongside football families, they are launching Head For Change, to pioneer positive change in brain health in sport and to provide care and support to former players and their families who are affected by neurodegenerative disease as a result of their professional career in rugby or football. ‘It’s all about protecting the players and protecting the game,’ says Alix.
Day to day, meanwhile, he still has regular appointments with a neuropsychologist and an occupational therapist, alongside daily coping strategies, such as reminder lists. ‘The neurologist has given us a five-to-ten-year management plan, but how quickly the symptoms get worse after that, nobody knows,’ he says. The couple have had to discuss the reality of carers, and the house being adapted. ‘ Obviously that’s upsetting to hear,’ says Alix.
It’s one reason why he is determined to take up new challenges, among them an Iron Man triathlon next year, as well embracing alternative treatments, f rom l i ght therapy to daily dips in the sea. ‘I’m up for doing everything,’ he says.
His wife is determined to remain positive, too, despite her sadness at watching what she describes as the light gradually fading in her ‘energetic, inspirational, selfless’ husband.
‘We were told by the neurologist back in April you’ve got to plan for the worst and hope for the best, and the way I see it, rock bottom was before diagnosis,’ says Mel.
‘Now, we can make the decision to take positive action. We haven’t got a time machine. Our end goal is to see what miracle we find so that Al can walk all his girls down the aisle. That’s our dream.’