When Gloucester’s lock on, Ed Slater started feeling muscle spasms in his arm 11 months ago, he didn’t think much about it until it kept happening 24/7.
Slater, 34, had felt fits like this before and his strength hadn’t affected at first, so two or three months passed before he told anyone.
“I didn’t want to face the fact that something could be wrong at that point, until I started losing strength in my arms and hands,” Slater told BBC Breakfast Sally Nugent.
At the end of July, it was announced that it was Diagnosed with motor neuron disease (MND) He 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 spasms began, continuing his last 78 appearances for the club in January.
As symptoms worsened, Slater visited a neurologist at the beginning of the year. Doctors ran tests and research surveys for possible injuries that might be caused by rugby, but they found nothing.
“Month after month went by, my arms got weaker and weaker, my grip got weaker and I went to Oxford and was diagnosed with MND,” Slater said.
“Part of me has predisposed to it, partly because of weakness and partly because of symptoms.
“I know my very close friends who lost a loved one because of it, and were 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’s not at all – but in some ways it’s been 11 months of agony, different symptoms, not knowing, looking for different causes, getting a definitive diagnosis – it seems strange to say This – but at least it gave me an answer.
“I didn’t want an answer but I can’t change it. My attitude is to keep going. There are hard things in life, there aren’t many things that are harder than that, but you have to face challenges head on.
“I don’t think much about the future, and take in each day as it comes. I find it a quiet place for me and it keeps me in the best spirits as much as I can.”
Facing a new reality
MND is a degenerative condition that affects the nerves in the brain and spinal cord. Slater isn’t the only athlete diagnosed in recent years.
Former rugby league player Rob Borough, former Scottish rugby union lock down Dodi Weir and former footballers Stephen Darby and Lynne Johnroses all have MND and have campaigned to raise awareness of the disease.
While Slater was “preparing for the worst,” he said it was very hard for his wife, Joe, to hear when the doctors broke the news.
“When they started talking about the facts of the matter, we switched roles and my wife went, ‘This is what I can do to help,’ when in fact this is where I found it very difficult and most emotional to be honest,” he said.
“Instead of getting the news, talking to someone about the facts of the disease you have, it was really hard.”
The couple was counseled on everything from how to adapt their home, how the disease would develop, how to apply for a blue disability badge and how to communicate news to friends and family.
Slater has already taken steps – like Former Burnley and Blackburn midfielder Johnroses has – To record his voice, as MND is known to affect speech.
“It was like, in that moment, drawing a line that I hadn’t prepared for,” Slater said.
“Time suddenly raced up and that was the hard part, but in some ways it gives me focus how I can help the family, creating as little work as possible for them as things change.”
Telling the couple’s young children – a boy and a girl – was equally difficult.
“We wanted them to have as much information as they could handle without hiding anything, and that meant talking about the facts of the disease,” Slater said.
“I didn’t want to get half the picture and capture so many changes that happen at home and in life.
“They are young so we adapted them, but they are amazingly resilient, and in that moment, they might have found it difficult, but once they realized that nothing had changed right away, they just kept going.
“They are lovely kids and they handled it really well. They came out with funny single lines and put a smile on your face. Just being around them is a huge relief.”
Take every 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 very successful seven-year spell with the Tigers, winning the 2012-13 Premier League title and becoming a captain. He also led the England Saxons in 2014 before joining Gloucester.
Prior to the diagnosis, Slater was already at a point in his career where he was considering a future transition into coaching and Gloucester opened the door for him to work with their academy. It is important to stay active for as long as possible.
“I feel like I’m fighting against something going forward,” he said. “But I have to be aware not to wake up every day looking for something worse.
“I have to take every day as it comes but there are signs. When I spoke to the guys here [at Gloucester] I said I needed a normal life. I wouldn’t be ashamed of it but at the end of the day I’m a normal person.”
Slater now wants to add his voice to the conversation about MND started by Burrow, Weir and Darby.
On Monday, Slater and a group of former and current teammates — including Fraser Balmain, Louis Ludlow and Billy Twelveters — began a 350-mile course from Kingsholm Stadium to raise awareness and money for the 4Ed campaign, which is set to generate money on his treatment and support for his family.
“The club rallied and others joined in to facilitate the bike ride,” added Slater.
“It’s quite challenging, I haven’t done any training, I rely on others who don’t either. I wanted to challenge myself both physically and mentally, and sometimes I don’t think there’s anything better than being around people you love being around and doing something that’s really challenging, and at the same Time raise the level of motor neuron disease.
“I am fully aware that there are a lot of people across the country who are living with this disease and not getting the support that I get.”
Ed doesn’t want to be treated differently.
BBC Breakfast Sally Nugent
When I first met Ed, two things struck me: his height (6 feet 6 inches) and his ability to make everyone around him feel comfortable.
We talked about rugby, the press, and the work our team has been doing on BBC Breakfast with other athletes with motor neurone disease.
He’s been watching him for the past few months, quietly suspecting that he’s on the same path as Rob Burrow, Dodi Weir, and Stephen Darby.
At first he didn’t want to tell anyone about his arm cramps and the weakness of his left side. But he did eventually and that led to a diagnosis of MND at John Radcliffe Hospital, not too far from where we are today.
I can’t see any obvious sign of disease that we know so well now, but Ed says he really feels like he’s fighting something.
He’s a family man and lights up when he talks about his kids: two girls and a boy. As we sit in the stands at Gloucester, his team trains below us. They stop for nothing, do not treat him differently – something important to him.
With that in mind, he will be taking a bike ride this week to raise funds and awareness for MND. He hasn’t trained for it and will ride on borrowed bikes, but he says his friends and teammates will pass him