Finding out you have Motor Neurone Disease - rugby star Ed Slater | The Big Jim Show

Let's back up a little bit, so I know we've had a couple of conversations when we were on the bike, we chatted with your brother a little bit and you know it was really nice to

have

that connection over them. Three days, I know it's a story you've told and will

have

to tell in the future, but a lot of listeners will listen to the podcast and know they would have gone along for the ride. over the last three days, but this is a process that you've gone through over the last few months and yeah, you've learned a little bit about yourself personally during the journey in terms of being in control, like you want to know how. far is right it's 10 miles just tell me it's 10 miles don't tell me it's 10 miles and it's 20 you want to be in control of the situation and this is a situation where you're out of control completely out of control, well , it

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ted in October of last year and I was feeling muscle twitches in my arms and you know we all know you've had a muscle twitch you know when you get a mini quad after doing weights or you know you have a twitch or your fingers twitch and It doesn't last longer than you know, a bad one or it would be an hour maybe or a couple of hours, well, I mean, these came.

It's very strange how it happens, but they woke up one morning with these contractions and then. They've never gone away, you know, they still move to this day and I probably will as long as it lasts, but they

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ted and after a couple of days you start doing it, this isn't meant to be. It's happening but you just ignore it, you know a lot of things and you shouldn't ignore them, but I think that's in our nature, isn't it? Rugby plays with its injuries or things that happen just go well, it's happening and I can move on, you know, it was hard to deal with it, you know, at night because your arms were shaking all over the place and you were like what the hell is going on here? um, but not me.

I'm not getting weaker, you know my grip strength was fine on that, I'm still training, I'm still training, yeah, no, no problems, I didn't say anything to anyone, you know, my wife knew, obviously, but that was it , I kept it completely to myself and then. After that, you know this continued for two more months, they were still there day after day, 24/7. You know, my wife was even saying you know that's also happening while you're sleeping because she didn't know if she while she was. sleeping if they turned off or not so she goes to look at what's happening while you sleep and she also said it's 24/7.

And then towards the end of December, I'm at the gym, I noticed I wanted to lift a dumbbell. You know, and it's not, it wasn't a heavy dumbbell, but my wrist wasn't strong enough to, you know, pick it up and put it on my lap ready to do some weight, so again, stupidly, I just said, Ah, that will be it! right, it's not that bad, I want to get it up there and I get it up, it's actually not that weak, you know, you start making up little excuses, um, but during those two months, you know what I know, um, tom young, tom ben young , unfortunately, lost o sir. cousin jake a uh a mnd and you know me and Fraser knew Jake I am and Fraser also knows him all the time actually um you know I'll talk to him a lot and m d's first thought came when we were talking about him he said We talked to Jake and he said one of his first symptoms was muscle twitches, just constant muscle changes, so in his arms too, so you're like, oh, I have constant muscle twitches.

I know Jake said that, so we're kind of playing with the idea that it could be serious, but we're almost looking for signs that it didn't go so well, so it was just a horrible position because you were so worried, so worried, but you didn't want to either. leave it. Someone knows because you felt like if you let someone know then it became more real, whereas if I kept it to myself or you know my wife or Fraser, I had control over it, like you say, I had control over it and You know I could. I left this normal life, but I actually noticed that my arm was starting to get weaker and weaker, so finally January came.

My arm became quite weak. But they sent me to a neurologist, I spoke to the club, Dr. Karen, who is she? It's been amazing, I'm in power too, they went straight to it, they sent me to see a neurologist and I went to see him and again, you know stupidly, but this is what happened, I saw him, we did some blood tests, I looked at my neck to see if there was a pinched nerve in my shoulder, see if there are any pinched nerves, something to basically try to rule out the worst case scenario, but nothing

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ed up.

The shoulder was clean and it was clear, the blood was clean and he He did some basic strength tests on me, you know, but I was fair. You know he was quite a bit stronger than the average person, so I was able to mask him a little bit and he was doing well in the tests on him. You know he had to push hard. He walked away and you know a little bit like the enthusiasm of the shoulders trying to push your shoulders out, no problem, um, so he said, well, they're just, you know, they're just contractions, didn't you lose strength?

This went on for three months, so you know, I would say it's probably called benign fasticulations, so that was like a green light for me, perfect, I hadn't fully told him about the weakness in my arm, I just let him do his test. , I tried my best and I thought maybe I could trick him, you know, he actually tries and tries to cheat on the exam and he said yeah, I think they're benign quick situations, so I stayed away from that and it was great , I won't see him again, no problem, just move on. training playing well obviously from January February the arm really dropped until about I can say it was ridiculous until the end when I said to one of the physiotherapists I said oh do you have any exercise?

I can do it, my left arm is a little weak. and he says, "You've been injured, you broke your foot, you haven't done anything, you know, you haven't been attacking people, so why is your arm so weak?" and then I realized that he had this neurology stuff and he told me. We have to talk to the doctor about this, you can't, you can't keep pretending that your arm is getting weaker and that it has nothing to do with muscle contractions and all that, I've been masking it somehow. for about four months, you know, I haven't gone back to teaching, it was still just um, just Fraser knew, my wife knew and I think my mom, that was it, that's how strict I had really kept it, um and again, a control thing if people don't I don't know then it's not happening yeah it's like you know a little fooled um so anyway once I realized we were going down the route of talking to the doctor again because my arm was getting weaker and weaker.

I knew what the route was. was going to go down, I knew there were going to be a lot of tests and I knew there was nothing wrong with my neck and my shoulder, I knew there was nothing wrong with my blood, um, so you really diagnose a mind based on everything else . be discarded, that's all you're left with, there's actually no test first so it's just a process of elimination, yes it's a process of elimination so I know from the past that everything had been eliminated so everything's going well, it really takes a um a It's really a miracle that something suddenly appears now, but I went to see the neurologists, who you know did an electro-emg, which is where they stick a lot of needles into your muscles and electrical pulses, they give you they put pads on, they send you electrical pulses, um and more. or less we did that test and there's no easy way to do it and obviously he had to do it a few times but just, yeah, I've looked at it, I have the emg, you get them instantly, these emg results and he told me this about me he said that there is a lot of denervation in your arms you know that the nerves are stopped they really stop working which suggests to me a neuronal

disease

so you go out a little bit you know that you don't have yet you still have I don't have a definitive answer because he wants to refer you to a specialist.

There is a medical clinic at John Radcliffe in Oxford. So you still get out of there. He thinks that's it, but you know maybe there's still something else going on. Know? I think let's say the human brain works, there's a little bit and the fact that you played

rugby

, yeah, no problem, shoulder problems and you, so I'm starting to let a few more people in my inner circle know what was happening and everyone. The attitude was a bit similar, well you've been playing

rugby

for years so you know there's probably going to be some kind of damage.

There's no way, I mean, you know you're 33 years old and it just doesn't make sense. um, I can understand that, but then you start, you know, at that point I start to realize what I told you on the bike ride, right, deep down I knew something wasn't right and you know that when you play rugby. . get a good feeling from your body, right? I was like something wasn't right, my arm just lost dexterity in my hand, you know, I mean, it's really slow now, but at that point I realized that my reactions to trying to catch things were completely skewed, so I basically waited to be referred to this mental clinic in Oxford, um, and it's like purgatory.

Actually, I didn't want that spa. I told him, I told my mother at the time. I remember saying, well, he thinks that's the way it is. So is there? If it makes sense to go see someone else, I might as well if that's what it's going to be and I might move on with things instead of having more tests and seeing another specialist because it's reality. It's extremely dark in the sense that you know it, so you're somehow doing well. I'll just live with the possibility that there might be a good chance it could be that, but I don't want it to be definitive.

You know, I can more or less. you live in a space where it's not, but you have little kids, you have responsibilities of all kinds, so you know you're the bait for this fight or flight, that's not really the flight response, not really, huh. I don't really want to face the reality that it's too bleak, so I spent probably a couple of weeks in that space, but then I realized, thinking about it, and it's like you can't, you can't live like that. I have lived 11 months really like this without knowing what it is, it couldn't be, your arm is getting weaker every day um, so I went to the mnd clinic and then they gave me the exam that I had done in January and completely different it was um there it was. you have I've seen this is still a neuronal

disease

and that's from January to well when I have it um June I think it was June I'm not sorry July January to July the difference in you know how I presented that I was able to fool the neurologist at that time.

I'm not proud of it, but that's what you do sometimes as a human being, you don't want to face that reality, so I could I did that in January, but when he saw me in July it was like a different animal, it was so obvious to him that he didn't need to do anything other than that exam, he sat down and said: you have, you have I have everything you have, so um, I had prepared for that before the appointment, obviously, I had had Garand's I think it's neural disease. Fuller, I said about a month before the date because I basically delayed it, I wanted a vacation so I prepared for that when he actually told me and that wasn't the part that bothered me, it was like somehow strange getting that answer definitely after the last 10 11 months um well it actually put you at peace a little bit because you thought well, I know that's what it is now um and in some ways that was a little bit easier place to live than, oh, You know, that's how it is.

It's not what's going to happen, you know, I don't know, I don't have enough information here, which sounds strange, so that was the whole process, but one thing I didn't touch on that I look back on now is during those ten months. I would like to be in and around the house because my arm was getting weaker. I knew my arm was getting weaker. I have handholds everywhere. You know what I mean? You know, like weightlifters grab all the metal. thing, yeah, yeah, yeah, I have them at home, so I'm testing that every 10 minutes, yeah, I'm doing push-ups there in the living room and I'm like, Am I stronger today?

Am I weaker today? Do you feel different? I mean, that was exhausting for my wife, but any chance she had would be like pushing my arm into something and that was hell, that's how it was honestly because that mental battle is like that, isn't it? Yes, yes, constantly. Looking for markers or signs to try to find something that will take you down a different path than m d, but you know I'm sitting here with it now and it's not going to change, so my attitude towards this has changed a lot actually. Actually since then it could be a

motor

neuron disease.