When Gloucester Lock Ed Slater started feeling twitching in his arm 11 months ago, he didn’t think much of it until it kept happening 24/7.
Slater, 34, had felt this type of cramp before and his strength was not affected initially, so it took him two or three months to tell anyone.
“I didn’t want to face that anything could be wrong at that point, until I started to lose strength in my arm and my hand,” Slater told BBC Breakfast’s Sally Nugent.
At the end of July, he announced that he diagnosed with motor neuron disease (MND) and confirmed his retirement from rugby union with immediate effect.
The second rower joined Leicester’s Cherry and Whites in 2017 and was still playing when the cramps started, before playing his last of his 78 appearances for the club in January.
As symptoms worsened, Slater saw a neurologist at the beginning of the year. Doctors ran tests and scans, looking for possible injuries that may have been caused by 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 for that, partly because of the weakness and partly because of the symptoms.
“I know very good friends of mine who have lost a family member to it, I was able to talk to them about his experiences and so I prepared myself.
“I’m not saying that makes it easier when you get the diagnosis – it definitely isn’t – but in some ways it was 11 months of agony, different symptoms, not knowing, looking for different reasons 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.
“I don’t think too far into the future and I take each day as it comes. I think that’s a quiet place for me and keeps me in the mood as best I can.”
Facing a new reality
MND is a degenerative condition that affects nerves in the brain and spinal cord. Slater isn’t the only athlete to have been diagnosed in recent years.
Former rugby league player Rob Burrow, ex-Scotland 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 was “preparing for the worst,” he said it was very difficult for his wife, Jo, to hear when doctors broke the news.
“When they started talking about reality, we switched roles and my wife said ‘here’s what I can do to help’, when I actually found it very difficult and most emotional there to be honest,” he said.
“Instead of getting the news, talking to someone about the reality of the disease you have, that was really hard.”
The couple was given advice on everything from how to adjust their home, how the disease would develop, how to apply for a blue disability badge and how to deliver the news to friends and family.
Slater has already taken steps – as former Burnley and Blackburn midfielder Johnrose has – to record his voice, with MND known to affect speech.
“It was almost like a line had been drawn at that point that I hadn’t prepared for,” Slater said.
“Suddenly time accelerated and that was the hard part, but in some ways it gives me a focus on how to help the family, create as little work as possible for them when things change.”
It was equally difficult to tell the couple’s young children – a boy and a girl.
“We wanted them to have as much information as they could handle without holding anything back and that meant talking about the reality of the disease,” Slater said.
“I didn’t want them to have half the picture and pick up on a lot of changes going on around the house and in life.
“They’re young, so we adjusted it, but they’re amazingly resilient, and at the time they may have found it difficult, but when they realized that nothing changed immediately, they moved on.
“They are beautiful children and they have handled it very well. They come up 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 career before moving to Leicester in 2010.
He enjoyed a hugely successful seven-year stint with the Tigers, winning the 2012-13 Premiership title and becoming captain. He also skippered England Saxons in 2014 before joining Gloucester.
Prior to the diagnosis, Slater was already at a point in his career where he was thinking about a future move into coaching and Gloucester has opened the door for him to work with their academy. Staying active for as long as possible is important.
“I feel like I’m fighting something that’s advancing,” he said. “But I have to be aware that I don’t 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 needed normalcy. I won’t shy away from it, but in the end 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 teammates – including Fraser Balmain, Lewis Ludlow and Billy Twelvetrees – will embark on a 350-mile bike ride from Kingsholm Stadium to raise awareness and money for the 4Ed campaign, set up to raise funds. generate for his treatment and to support his family.
“The club has gathered and others have joined to facilitate the bike ride,” Slater added.
“It’s a huge challenge, I didn’t do any training, I rely on others 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 like to be around and do something that is really challenging, while raising the profile of motor neuron disease.
“I am well aware that there are many people living with this disease across the country who are not getting the support that I have.”
‘Ed doesn’t want to be treated differently’
BBC Breakfast’s Sally Nugent
When I first meet Ed, two things stand out to me: his height (6ft 6in) and his ability to make everyone around him feel relaxed.
We talked about rugby, about journalism and the work our team has been doing on BBC Breakfast with other athletes with motor neuron disease.
He’s watched it all over the past few months, quietly suspecting he was on the same path as Rob Burrow, Doddie Weir and Stephen Darby.
At first he wouldn’t tell anyone about the cramps in his arm and weakness on his left side. But eventually he did and that led to a diagnosis of MND at John Radcliffe Hospital, not far from where we are now.
I don’t see any clear sign of the disease 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. While we are in the stands in Gloucester, his team is training below us. They stop for nothing, don’t treat him differently – something that is important to him.
With that in mind, he will be riding his bike this week to raise money and publicize MND. He hasn’t trained for it and they will ride on borrowed bikes, but he says his friends and teammates will see him through it