Ex-England captain Lewis Moody has opened up about his courageous battle with motor neurone disease following last October’s revelation that he had been diagnosed with the muscle-wasting condition that killed fellow rugby players Doddie Weir and Rob Burrow.
The 2003 Rugby World Cup winner went public seven months ago about how a shoulder weakness while training in the gym wasn’t solved by physio, and subsequent scans revealed that MND has damaged nerves in his brain and spinal cord.
Moody has given an update on how he is currently feeling, revealing the “absolute rocks” from the rugby dressing room who rallied about him, including former England skipper Martin Johnson.
He has also spoken about the kindness of strangers that he has experienced, explained why he is using AI to build up a voice bank and why his connection to the My Name’5 Doddie Foundation convinced him there was no need to set up another MBD charity organisation.
Moody has always been a frequent cyclist since his retirement as a rugby player, regularly committing to fundraising challenges on an annual basis. But his recent involvement in The Race to the Slater Cup, where rival teams set out from either Welford Road and Kingsholm to be the first to arrive at Villa Park for the Gloucester versus Leicester PREM Rugby match on March 28, resulted in mixed emotions.
Speaking to Sky Sports, Moody said: “It was really hard. For the first time ever, I had to get off. It was horrible, actually. But the support from Martin Corry and Martin Johnson happened to be there at the time. They were like, ‘No, you’ve got to stop. Just get off. You don’t need to continue. Just get off.’ And, yeah, that was lovely.
“It’s just, just adapting my expectations, which I probably knew would happen anyway, so I was prepared for it. But when you recognise it, or when it happens, it doesn’t hit you easily, you know? So, it was lovely to have them both there.”
The stoppage hasn’t put Moody off cycling. Far from it, as there are now plans for a 500-mile bike ride in June that will finish in Twickenham on the day of the Gallagher Prem final. That’s an event sure to bring the best out of strangers, something he has experienced since going public with his diagnosis.
“After literally the day I announced it, I was walking through town and just heard this car screech to a stop. Someone jumped out, ran over and literally sprinted to me and went, ‘I just need to give you a hug.’ He gave me a big hug and then ran off. It was lovely actually, and it has been lovely since.”
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Of huge help to the ex-England back-rower has been the reaction of his rugby friends. “Having a support network of close friends that were immediately ready to step up and support, it was just amazing,” he said. “You know, Leon (Lloyd), sleeping on the driveway. I specifically told him not to come down.
“He came down the night I found out, prior to telling the world. I was like, ‘Mate, don’t come down’. I was just, you know, ‘I’m just going to have a sleep, and we’ll find the right time’.
“He drove down and got down so late we’d already gone to bed. So, he tried to stay in a Travel Inn or something. Ended up not being able to get a room. So, he slept on the driveway in his car until six in the morning. And then he was there in the morning.
“That was wonderful, so Leon, Geordie (Murphy) and just everyone’s been great. That small group of people who have been my absolute rocks. When you’re diagnosed, you’re just diagnosed. And we all know what that looks like from the end result in terms of seeing Doddie and Rob and Joost (van der Westhuizen) and all those guys.
“But because you’re not given any information initially, and it feels unbelievably negative, and all the noise around is negative, all your thought processes are negative. But actually, when you sit down with other specialists and other people in that space that have been operating in it for a long time, they start giving you information and you start realising that no one individual is the same.
“No person’s experience of it is the same. You know, the time that progression takes is different for everyone. So, the only certainty is that everything is uncertain. You know, that’s what I learned. And I suppose maybe the same can be said for life in many respects.”
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Moody is currently building up a voice bank to help him down the line in the non-communicative stage of the disease. “The idea of doing it, I probably delayed for a while at the start because I was ‘Like, no, I don’t need to do that, I’m fine’.
“But why wouldn’t you, especially with the advancement of AI now, or all the stuff that’s happening in this space, is that the more information you can have for the tools and the algorithms, then the better. So I’ve done numerous things.
“One of my mates, Dodge, has got a studio that we borrowed and he’s recording videos where you can create virtual avatars and the voice. And also content around my behaviours and thought processes, so that AI eventually can have the ability to predict what you’re thinking.
“The only thing I was scared of was – as someone that loves communicating with people and, you know, feeling the warmth and embracing, the sort of non-communicative skills – there’ll be a time when you can’t do either potentially. So that was terrifying.
“Actually knowing that there is something, or that there is a better way of making effective communication easy – and that’s been really sort of warming. And the longer my symptoms are as they are, the more everything around me will advance. And, you know, just know that if and when that time arrives, you’ll be in a better space.”
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Asked what ‘winning’ looks like given his situation, Moody talked about embracing the battle to amplify the MND message. “I suppose you reframe what winning is,” he said. “You have always had that; anything you’ve done has been competitive, but how do you overcome it, how do you beat it?
“So, there’s still a part of that for me with this, and maybe a lot of that comes back to the connection to the charity focus that we’re having with Doddie’s. I have felt from day one, since speaking to Kenny (Logan) and a couple of the other lads, that they have almost gone, ‘Here you go, you’re in off the bench for this. We’ve done that. We’ve done the hard work. Now you get the rest of it done’.
“So, there is that real piece of connectivity to My Name’5 Doddie Foundation and the desire not to want to set up another charity. It’s like, why should I put something else in the way of the great work that’s been done already?
“And I suppose it’s getting in there and amplifying the message, the work that they’re doing, wanting to have as big an impact as possible in this MND space with these guys. They talk about a world free from MND and a quicker route to effective treatments.
“Winning looks like I’ve got a wonderful purpose. I described it the other day – it’s like, for the last 15 years, you feel like you’ve not had a proper fight to get into. Like, your teeth are a little bit blunt, you’re happily just getting on in Bradford-on-Avon, but now all of a sudden you’ve got that… almost reinvigorated.
“We always have masks, don’t we, that we use? And my sporting mask was one, allowing me to amplify uniquely in one specific area and apply my physical exertion and energy.
“I can be the maddest version of myself in that. And I loved it. And now I can just get to be the most focused in this space, and it brings with it a new energy and a new purpose and a new strength, I suppose.”
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