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When Ed Slater started feeling muscle cramps in his arm 11 months ago, he didn’t think much of it until it kept happening around the clock.
Slater, 34, had experienced such contractions before and his strength was initially unaffected, so it was two or three months before he told anyone.
“I didn’t want to face the fact that something could go wrong at that point until I started losing strength in my hand and arm,” Slater told BBC Breakfast’s Sally Nugent.
In late July, he announced that he was diagnosed with motor neurone disease (MND) and confirmed his retirement from rugby union with immediate effect.
The second in the series joined the Cherry and Whites from Leicester in 2017 and was still playing when the upheavals began, making the last of his 78 appearances for the club in January.
With symptoms worsening, Slater saw a neurologist at the start of the year. Doctors ran tests and scans, looking for possible injuries that may have been caused by the rugby, but found nothing.
“It was month after month, my hand got weaker and weaker, my grip got weaker and I went to Oxford and was diagnosed with MND,” Slater said.
“Part of me had been prepared for this, partly because of the weakness and partly because of the symptoms.
“I know very close friends who lost a family member to it, I was able to talk to them about their experiences and that’s how I prepared myself.
“I’m not saying it makes it easier when you’re diagnosed – it’s not – but somehow it was 11 months of torture, different symptoms, not knowing, looking for different reasons and having a definitive diagnosis – it sounds strange to say that – but at least he gave me an answer.
“I didn’t want an answer, 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 this, but you have to face challenges head on.
“I don’t think too far ahead and take each day as it comes. I find this is a quiet place for me and it keeps me in the best mood possible.”
Faced with a new reality
MND is a degenerative condition that affects the nerves of the brain and spinal cord. Slater isn’t the only sports person to be diagnosed in recent years.
Former rugby league player Rob Barrow, former Scottish rugby union lock Dodie 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 the reality, we switched roles and my wife said, ‘here’s what I can do to help’, when actually that’s where I found it very difficult and more emotional to be honest,” he said.
“Instead of getting the news, talking to someone about the reality of the disease you have was really hard.”
The couple were given advice on everything from how to adapt their home, how the disease would progress, how to apply for a blue disability badge and how to break the news to friends and family.
Slater has already made strides – like Former Burnley and Blackburn midfielder Johnrose has – to record his voice, with MND known to affect speech.
“It was almost like in that moment he had drawn a line that I hadn’t prepared for,” Slater said.
“All of a sudden time had sped up and that was the hard part, but in some ways it gives me a focus on how I can help the family, create as little work as possible 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 reality of the disease,” Slater said.
“I didn’t want them to have half the picture and watch a lot of changes going on at home and in life.
“They’re young so we adjusted, but they’re amazingly resilient and, at the time, it might have been difficult for them, but once they realized nothing was going to change immediately, they got on with it.
“They’re beautiful kids and they handled it really well. They come out in funny one-pieces and put a smile on your face. Being around them is a great source of comfort.”
Taking 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 highly successful seven-year spell with the Tigers, winning the 2012-13 Premiership title and becoming captain. He also captained England Saxons in 2014 before joining Gloucester.
Before the diagnosis, Slater was already at a point in his career where he was considering a future move into coaching and Gloucester opened the door for him in partnership with their academy. It is important to stay active for as long as possible.
“I feel like I’m fighting against something that’s moving forward,” he said. “But I have to have the sense 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 talked to the players here [at Gloucester] I said I need normalcy. I’m not going to avoid it, but at the end of the day I’m a normal person.”
Slater now wants to add his own voice to the MND debate that Burrow, Weir and Darby have started.
On Monday, Slater and a group of former and current team-mates – including Fraser Balmain, Lewis Ludlow and Billy Twelvetrees – embark on a 350-mile cycle from Kingsholm Stadium to raise awareness and money for the 4Ed campaign, created for to raise funds for his treatment and for the support of his family.
“The club has rallied and others have joined in to facilitate the bike ride,” added Slater.
“It’s a huge challenge, I haven’t done any training, I’m relying on others who haven’t. I wanted to physically and mentally challenge myself and sometimes I don’t think there’s anything better than being around people you like to be with close and do something that’s really hard and raise the profile of motor neurone disease at the same time.
“I’m very aware that there are many people across the country living with this disease who don’t have 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 strike me: his height (6ft 6in) and his ability to make everyone around him feel at ease.
We talked about rugby, journalism and the work our team has done on BBC Breakfast with other athletes with motor neurone disease.
He’s watched it all over the past few months, silently suspecting he was on the same path as Rob Burrow, Doddie Weir and Stephen Darby.
At first he didn’t want to tell anyone about the hand twitches and the weakness on his left side. But eventually he did and that led to a diagnosis of MND at the John Radcliffe Hospital, not far from where we are today.
I can’t see any obvious signs 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. As we sit in the stands at Gloucester, his team train below us. They stop for nothing, they don’t treat him differently – which is important to him.
With that in mind, he will be embarking on a bike ride this week to raise money and awareness of MND. He hasn’t trained for it and will be cycling on borrowed bikes, but says his friends and teammates will see him through
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