When Gloucester lock Ed Slater started feeling muscle twitches in his arm 11 months ago, he didn’t think much of it until it kept happening 24/7.
Slater, 34, had felt twitches like these before and his strength hadn’t been affected initially, so it took two or three months before he told anyone.
“I didn’t want to realize that anything could be wrong at the time, until I started losing strength in my arm and hand,” Slater told BBC Breakfast’s Sally Nugent.
In late July, he announced that he had been diagnosed with motor neurone disease (MND) and confirmed his retirement from rugby union with immediate effect.
The second rower joined the Cherry and Whites from Leicester in 2017 and was still playing when the twitches began, making the last of his 78 appearances for the club in January.
As the symptoms worsened, Slater saw a neurologist at the beginning of the year. The doctors did tests and scans, looking for potential injuries that may have been caused by the rugby, but found nothing.
“It was month after month, my arm got weaker and weaker, my grip got weaker and I went to Oxford and was diagnosed with MND,” Slater said.
“Part of me had prepared myself for it, partly because of the weakness and partly because of the symptoms.
“I know very close friends of mine who have lost a family member to it, was able to talk to them about his experiences and so I prepared myself.
“I’m not saying it makes it easier when you’re diagnosed – it certainly doesn’t – but in some ways it had been 11 months of agony, different symptoms, not knowing, looking for different causes and having a definitive diagnosis – it sounds strange to say this – but at least it gave me an answer.
“Not an answer I wanted, but I can’t change it. My attitude is to get on with things. There are hard things in life, not many things harder than that, but you have to face challenges head on.
“I don’t think too far into the future and I take each day as it comes. I find it a peaceful place for me and keep myself in the best mood I can.”
Facing a new reality
MND is a degenerative condition that affects nerves in the brain and spinal cord. Slater is not the only sports figure to have been diagnosed in recent years.
Former rugby league player Rob Burrow, former Scottish rugby union lock Doddie Weir and former footballers Stephen Darby and Len Johnrose all have MND and have campaigned to raise awareness of the disease.
While Slater had “prepared for the worst”, he said it was very difficult for his wife, Jo, to hear when doctors delivered the news.
“When they started talking about the realities of it, we switched roles and my wife said, ‘here’s what I can do to help’, when actually that’s where I found it really tough and most emotional to be honest,” he said.
“Instead of getting the news, talking to someone about the realities of the disease you have was very difficult.”
The couple were given advice on everything from how to adapt their house, how the disease will progress, how to apply for a blue disability badge and how to break the news to friends and family.
Slater has already taken steps – like former Burnley and Blackburn midfielder Johnrose has – to record his voice, with MND known to affect speech.
“It was almost like at that moment a line was drawn that I hadn’t prepared for,” Slater said.
“Suddenly time had gone by fast and that was the hard part, but in some ways it gives me a focus on how I can help the family, create the least amount of work for them as things change.”
Telling the couple’s young children – a boy and a girl – was just as difficult.
“We wanted them to have as much information as they could handle without holding anything back, and that meant talking about the realities of the disease,” Slater said.
“I didn’t want them to have half the picture and capture a lot of changes happening around the house and in life.
“They’re young so we adapted it but they’re incredibly resilient and in that moment they might have found it difficult but once they realized nothing was going to change immediately they got on with things.
“They’re beautiful kids and they coped really well. They come out with funny one-liners and put a smile on your face. Just being around them is a great source of comfort.”
Take each day as it comes
Slater spent time with Eastern Suburbs in Sydney, Australia and Nottingham, in the English Championship, early in his rugby union career before moving to Leicester in 2010.
He enjoyed a highly successful seven-year spell with the Tigers, winning the 2012-13 Premier League title and being named captain. He also skippered England Saxons in 2014 before joining Gloucester.
Before his diagnosis, Slater was already at a point in his career where he was thinking about a future move into coaching, and Gloucester have opened the door for him to work with their academy. Staying active as long as he can is important.
“I feel like I’m fighting something that’s moving forward,” he said. “But I have to be conscious not to wake up every day looking for something worse.
“I have to take each day as it comes, but there are signs. When I spoke to the players here [at Gloucester] I said I need normality. I don’t want to shy away, but at the end of the day I’m a normal person.”
Slater now wants to add his own voice to the conversation about MND that Burrow, Weir and Darby have started.
On Monday, Slater and a group of his former and current team-mates – including Fraser Balmain, Lewis Ludlow and Billy Twelvetrees – will begin a 350-mile cycle from Kingsholm Stadium to raise awareness and money for the 4Ed campaign, set up to generate funds for his treatment and to support his family.
“The club has come together and others have joined in to facilitate the bike ride,” added Slater.
“It’s a big challenge, I haven’t trained, I trust other people who haven’t either. I wanted to challenge myself physically and mentally and sometimes I don’t think there’s anything better than being around people. you love to be around and do something that is really challenging, and at the same time raise the profile of motor neurone disease.
“I am very aware that there are many people around the country living with this disease who are not receiving the support that I have received.”
“Ed doesn’t want to be treated differently”
BBC Breakfast’s Sally Nugent
When I first meet Ed I am struck by two things: his height (6ft 6in) and his ability to make everyone around him feel relaxed.
We talked about rugby, about journalism and the work we’ve done on BBC Breakfast with other athletes with motor neurone disease.
He has seen it all for the past few months, and quietly suspects he was on the same path as Rob Burrow, Doddie Weir and Stephen Darby.
Initially, he did not want to tell anyone about the twitching in his arm and the weakness on his left side. But eventually he did, and it led to a diagnosis of MND at the John Radcliffe Hospital, not too far from where we are today.
I can’t see any obvious signs of the disease that we’re so familiar with now, but Ed says he already feels like he’s fighting something.
He is a family man and beams when he talks about his children: two girls and a boy. As we sit in the stands in Gloucester, his team is training below us. They stop at nothing, treat him no differently – which is important to him.
With that in mind, he will embark on a bike ride this week to raise money and awareness for MND. He hasn’t trained for it and they’ll be riding borrowed bikes, but he says his friends and teammates will get him through it