'That was hell, that was honestly hell'

Former Gloucester lock Ed Slater has provided a compelling insight about how he was diagnosed with MND. It was July when the Gallagher Premiership club announced the 34-year-old forward’s diagnosis and that he was retiring from playing with immediate effect.

Having since completed a 350-mile charity cycle to a number of rugby stadiums he played at during his career, he has now appeared on The Big Jim Show – hosted by ex-Scotland second row Jim Hamilton – and detailed his journey from last October’s muscle twitches to confirmation at a clinic in Oxford that he has MND.

Over the course of an hour-long conversation, Slater forcefully outlined the unravelling of a reputable rugby career that reached its high with him being appointed as captain of the midweek England team on their 2014 tour to New Zealand.

He was sidelined with an injury early in the 2021/21 season and while he made it back after Christmas to play four more times for Gloucester, Slater privately knew there was an underlying issue affecting the strength in his arm and that investigation ultimately resulted in his tragic MND diagnosis.

Here is how Slater – in his own words – described how he went from suffering muscle twitches ten months ago to learning his cruel fate:

Such a moving listen ?@edslater tells @jimhamilton4 about:

? Desperately wanting to ignore his worsening symptoms
? Sense of ‘peace’ his diagnosis brought after months of concern
? How he now craves ‘normality’ and enjoys each day as it comes
? Pride in his rugby career https://t.co/dANIRZ3eqD

— Progressive Rugby (@ProgressiveRug) August 23, 2022

“It started in October last year, I was just getting muscle twitches in my arm… like, I woke up one morning with these twitches and they have never left, I still twitch now. They started and after a couple of days, you go, ‘This isn’t really meant to be happening’. But you just ignore like lots of things and you shouldn’t ignore it. That is in our nature as rugby players, whether it is injuries or things going on, you just go I can get on with it.

“It was difficult to deal with at times because your arms are jerking all over the place and you are going, ‘What on earth is going on here?’ But I wasn’t getting any weaker, my grip strength was fine at that stage, still training, no problems there and didn’t say anything to anyone. My wife knew but that was it, kept it completely to myself.

“It went on for another two months and they [the twitches] were still there, day in, day out, 24/7. My wife was saying it’s even happening in your sleep as well. Towards the end of December, I made to pick up a dumbbell and I couldn’t. It wasn’t a heavy dumbbell but my wrist wasn’t strong enough to pick it up, put it on my lap and be ready to do some weights. Again, stupidly, I went, ‘It will be alright, it’s not that bad. Once I get it up there I will lift it, it’s not actually that weak’. You start coming up with little excuses.

“But along those two months, I knew Ben Youngs had unfortunately lost his cousin Jake to MND. I knew him and the first thought of MND came as we had spoken to Jake and one of his first symptoms was muscle twitches, just constant muscle twitches in his arms. So you are going, ‘I have got constant muscle twitches and I know Jake had said that’. So we are toying with the idea that it could be serious but almost looking for signs that it wasn’t.

“It was a horrible position to be in because you were worried sick but you also didn’t want to let anybody know because you felt if you let someone know then it became more real whereas if I kept it to myself or my wife or Fraser (Balmain), I had control of it… but I actually realised by arm was getting weaker and weaker. So, in the end, it got to January and my arm had become fairly weak and I was sent to a neurologist after speaking to the club doctor.

“We did some blood tests, looked at my neck, my shoulder to see if there were pinched nerves, anything basically to try and rule out the worst-case scenario but nothing showed up. Shoulder was clear, neck was clear, bloods were clear, and he did some basic strength tests on me. I was stronger than the average person, so I could mask it a little bit.

“He was doing the assessment and I’d push him away, a little bit like the HIA shoulder test trying to push your shoulders out no problem. He was like, ‘There are just twitches, you haven’t lost strength, it has been going on for three months so I would say benign fasciculation’. That was like a green light for me.

“I hadn’t told him fully about the weakness in my arm. Let him do his test, try my best and I thought maybe I can just fool it, try and cheat the test. So he said, ‘I think it is benign fasciculation’. I went away from that and went, ‘Great, I’m not going to see him again and I’ll just crack on training and playing’.

“But from February until about May the arm really dropped off. It was ridiculous, to the extent that I said to one of the physios, ‘Have you got some exercise I can do? My left arm is just a bit weak?’ He was going, ‘You have been out injured, you broke your foot, you haven’t done anything, you haven’t been tackling people, why is your arm so weak?’

“He said, ‘We have to speak to the doc about this, you can’t keep pretending that your arm is just getting weaker and it’s nothing related to the muscle twitches and whatnot’. In a way I had been masking it for four months, so once I realised we were going down the route of speaking to the doctor again because my arm had become weaker and weaker, I knew what route it was going to go down.

“I knew there were going to be lots of tests. There was nothing wrong with my neck and my shoulder, I knew there was nothing wrong with my bloods – and MND is diagnosed really on everything else being ruled out. That is all you are left with, there is not actually a test, it’s a process of elimination. I knew from previous that everything had been eliminated so I was going, ‘Well, it would take a miracle for something to show up suddenly now’.

“I went to the neurologist, did an EMG… and you get the results instantly. This was about May and he said, ‘There is lots of denervation in your arms, the nerves have stopped working really which for me suggests motor neurone disease’. But you still haven’t got a definitive answer because he wants to refer you to a specialist, to an MND clinic in Oxford. You still come out of it saying, ‘He thinks it’s that but maybe there is still something else at play’. That is just how the human brain works.

“I started to let a few more people in my inner circle know what was going on and everyone’s attitude was a little similar, ‘Well, you have been playing rugby for years so there is probably going to be some sort of damage, there is no way it can be (MND). You’re 33 years old, it doesn’t make sense’.

“I can understand that but by that point, I started to realise I knew deep down something wasn’t right. When you are playing rugby you do get a good feel for your body, niggles, whether something is serious enough to keep you out or whether you are able to play and train on, you start to get a feel for your body and by that point, I knew something is not right, my arm was just, I’d lost dexterity in my hand. It’s really slow now but at that point, I realised my reactions to try and catch things had completely skewed.

“I just basically waited to be referred to this MND clinic in Oxford and it was like purgatory. I said to my mum at the time, ‘Well, he thinks it is that so is there any point in going to see someone else? If it is going to be that, it is going to be that and I might as well just get on with things rather than just going for more tests and seeing another specialist?’

“The reality of it is it is extremely dark so in some ways you were going, ‘I will just live with the possibility that it could be that, there is a good chance it could be that but I don’t want it definitive. I can live in a space where it is not’. But you have got young kids, you have got responsibilities and so I went to the MND clinic, they did the examination I had done in January and it was completely different.

“He goes, ‘That is MND’. I had prepared myself for that leading up to the appointment and that wasn’t the bit that upset me, it was in some strange way getting that definitive answer after the last ten, eleven months, it actually puts you a little at peace, ‘Right, I know it’s that now, that is what it is’.

“One thing I didn’t touch on that now I look back is during that ten months in and around the house because my arm was getting weaker, I had hand grips everywhere, you know like the weightlifter hand grips. I had them around the house and was testing every ten minutes, I’m doing press-ups in the lounge going, ‘Am I stronger today, am I weaker today, does it feel any different?’

“That was exhausting for my wife but any chance I’d get I’d be pushing my arm against something and that was hell, that was honestly hell. Constantly looking for markers or signs to try and find something that would take you off a different path from MND, but I am sitting here now with it and it’s not going to change.

“My attitude towards it has changed a lot since that first it could be motor neurone disease consultation I had. That was where I started to go this is the path I am on really, I knew what was going to happen more or less at the MND clinic. I don’t know why I would go there unless it would lead down that path, so I had prepared myself from that point which is probably why my attitude is what it is at the moment.”