Lewis Moody and living with MND

0:00How does a banana trigger a CIA-backed coup? Do AirPods herald the arrival of a new global order? What do LED lights say about the future of humanity? I'm Ed Conway, and in each episode of my new podcast, Stuff Matters, I take an object, crack it open, and reveal the world-shaping forces hidden inside. This is economics told through the things we think we understand. Search Stuff Matters on your podcast app to listen and follow. Coming up, Lewis Moody becomes the latest rugby player to announce he has motor neuron disease. So what do we know about the condition and how will the World Cup winner face his greatest ever challenge?

0:42How does a banana trigger a CIA-backed coup? Do AirPods herald the arrival of a new global order? What do LED lights say about the future of humanity? I'm Ed Conway and in each episode of my new podcast, Stuff Matters, I take an object, crack it open and reveal the world-shaping forces hidden inside. This is economics told through the things we think we understand. Search Stuff Matters on your podcast app to listen and follow.

1:13Dr Mike Rogers:Dawson. Simpson Daniel. Wilkinson. Good step from Wilkinson. Chance here for Moody. It's a try. For Lewis Moody. He was nicknamed Mad Dog during his playing career because of the tenacity and ferocity which he brought to rugby. Absolutely hard as nails, Lewis Moody was seemingly never happier than when taking the game straight to his opponents. And it clearly worked, as proved by, let's count them, seven Premiership medals, three Six Nations titles, the England captaincy, not to forget, taking the ball in the line-out in the dying seconds of the 2003 World Cup final, allowing Johnny Wilkinson to slot it home for an England victory.

1:58Lewis now faces his greatest challenge and one he knows he can't win. Because as he announced this week, he's been diagnosed with motor neurone disease. And he's certainly not the first. Scotland legend Doddy Weir raised millions for motor neurone research before he died as did the England Rugby League star Rob Burrow. So what do we know about motor neurone disease? and what can those who know Lewis well tell us about how he will be dealing with the diagnosis. For that, his former England teammate Will Greenwood is on the podcast.

2:29Dr Mike Rogers:From all corners of the world, there is just nothing but an outpouring of love for a player that is universally respected for the way he acted on and off the field. We'll return to Will just a little later, but first, Dr Mike Rogers, Director of Research and Innovation at the MND Association. Mike, what exactly is motor neurone disease?

2:47Will Greenwood:It's a disease that affects the motor neurons. So these are nerves that are found in your brain and in your spinal cord. They tell your muscles what to do. With MND, messages from the motor neurons stop reaching the muscles, basically. And this affects movements, speech, things like swallowing and breathing. Now, the symptoms of progression are very variable and people experience the disease extremely differently. There are six people diagnosed a day. Half of these or die within two years of the diagnosis. So the prognosis for those with a motor neuron disease diagnosis is not good? It's not good.

3:28Will Greenwood:It's a devastating diagnosis to receive and obviously there's also a lot of uncertainty there around exactly how your disease will progress, how it's going to affect you day to day and also how long you'll survive. Can we generalise as to how prevalent a condition this is? You say six are diagnosed every day but but in total what are we looking at in terms of the population as a whole there's around 5 000 people with motor neurone disease in the uk um there's about one in 300 chance of you getting it at any point across your lifetime what then do we know about the causes of motor neurone disease there have been a number now of high profile rugby players with the condition is there then a link that we know of between rugby contact sports and mnd so cause is really really complex in motor neurone disease about 15 of people with mnd have a known genetic cause but that then leaves 85 of people with what we call sporadic mnd and we don't know what the cause is in all of those cases obviously as you say there's been a lot of high profile cases particularly coming from the sports world, rugby in particular, but we've also seen football.

4:41Will Greenwood:And I believe over in the States has also been some focus on American football. Previous studies have looked into whether exercise or head impact from contact sports might increase your risk. And there is a suggestion from these studies that being an NFL player or a footballer or a rugby player gives you an increased risk. They don't demonstrate a cause or that it's the sport itself doing this. Other professions are at risk as well. So if you're a serviceman or an ex-serviceman, your risk is higher. Also, MND is rare. It's a relatively rare disease. So numbers in these studies are very small. So we have to take a lot of care in drawing conclusions.

5:22Mike, obviously, as someone who played a lot of rugby when he was a lot younger, frankly, there was always a concern around concussion. there was always a risk of head injuries, particularly if you were playing in the front eight. I mean, is there anything that would suggest a link between head trauma and motor neuron disease?

5:44Will Greenwood:So concussion's a form of what's known as traumatic brain injury. With a couple of other charities, we funded a study that was led by Willie Stewart in Glasgow, and actually the results of this study came out last week. and what Willie did was looked at health records of over 340 ,000 people and what he found was those with a history of traumatic brain injury so that would include concussion are twice as likely to receive an MND diagnosis than those without however there's a really interesting further finding in the study because the increased risk was confined to the first two years after the traumatic brain injury that suggests that in some cases the traumatic brain injury like the concussion might actually be an early sign of mnd rather than its cause again care with these conclusions and all of these um these studies that i've mentioned these are really about further research which can be done on that basis um but that was a really really interesting study that we're really pleased to have funded but but certainly and this is just to be absolutely clear about this we are not in a position to draw a direct link between the sport of rugby professional rugby and motor neuron disease we are absolutely not where are where are we then in terms of of treatment and one day a cure you don't know the exact cause of a disease it's quite difficult to treat it but there's been a real upsurge in mnd research over the last 10 or 15 years and we've learned a lot about the disease and a lot about the biology and targets for treatments are starting to emerge some of which are quite promising.

7:21Will Greenwood:We've also had a very very exciting few years with a particular genetic variant and a treatment has been developed for this genetic variant. Now it's not available on the NHS yet it's going through the regulators but that's had a very very profound effect on that small amount of people with that mutation. Now this won't worry for the vast majority of people with MND but what it does is also provides proof of concept that this is doable. And there are a number of other treatments in development at various stages, which are starting to indicate some real promise. So I think all these different lines of inquiry, huge commitment from researchers across the world in this.

7:57Will Greenwood:I'm confident that we will eventually get there, yes. Dr Mike Rogers, thanks very much for your time. Will Greenwood is a former England international and British line. He was part of the side that won the World Cup back in 2003. Well, obviously, you've known Lewis for decades. The news of his diagnosis must have hit you pretty hard.

8:16Dr Mike Rogers:Yeah, it was a tough day. I say tough, I can't imagine what Lewis and Annie and the boys are going through. But it was not a Monday morning that I will ever remember with any sort of fondness. And the phone was beeping a lot. And Lewis was just letting us know that this news was about to hit. and just checking in. I spoke to him in the afternoon just to understand, look, I'm happy talking about it, but are you happy me talking about it? Do you want people to shut up and just go away and leave you or would you like us to go and perhaps be a mouthpiece for you so that you don't have to do a million interviews yourself and say it would be delighted if this happens.

9:01Dr Mike Rogers:So over the course of the last 24, 36 hours, we've all just done our bit to make sure that people know that currently he feels great in himself wouldn't change one thing about his career before there's any sort of dark causation slash correlation going on between rugby and his injury that he is focused on living he's going to do stuff he's going to get involved with the charity he's not going to set his own charity up he's going to get on a bike although he did laugh and saying it may not be me I might get some other the Muppets to get on a bike and cycle for me. Immediately his childish humor just comes straight back to the fore.

9:39Tell me then about the man, because as you say, his thoughts went to his former teammates, his thoughts went to his mother. He also said, you know, my first thought was, you know, how am I going to tell the kids this? And that says an awful lot about the man.

9:50Dr Mike Rogers:Yeah, the boys mean everything to him. I think the top of my list is just every time I see him, I have a grin as wide as a Cheshire cat. just reminds me of the bestest of times. Just all these memories come flooding back. There's so many different wonderful things about him. One is, if you ever were to have yours, it sounds a bit posh having a dinner party, but there's always a guy, who would you invite to a dinner party? And you might talk about all these famous historical figures or current world leaders who are making such a difference on so many levels. But you always need someone who can connect everyone and get everyone to smile.

10:30Dr Mike Rogers:and the top of that list would be just bring Lewis. If you want everyone to have a little bit of fun in the process, bring Lewis. And he was a leader as well. He was a doer rather than a talker. I think one of the most wonderful things when you actually look into it, it was never really announced actually, but in the years after he left, after every Test match, England would give out the Lewis Moody Award. What did that mean? It meant someone who'd given total and utter commitment to the team cause with utter selflessness. And that's a pretty special thing. The England rugby team gave out a Lewis Moody Award, and I just think that's a wonderful thing and hopefully brings again to life the sort of commitment he gave on the field.

11:10Dr Mike Rogers:But the second the game finished, it was comedy, it was laughter. He was just a great tourist. If you need to have some fun and relax away from the game, you chill with Lewis. If you need to train really hard and get slightly better to play the All Blacks on Saturday, you train with Lewis. I've always maintained that rugby is the ultimate team game. You can have outstanding individuals, but you're not going to win. without the commitment of all. And at a time like this, rugby's going to start to unite around him, isn't it? Yeah, I think you see it happen already. I mean, I've had all sorts of offers.

11:42Dr Mike Rogers:How can I help? What do you need? Do you need a box here? Immediately people start to think about fundraising. Lewis will go away, I'm sure, for a couple of weeks and start to think with Annie about what they need. Lots of things are happening in the background to try and make sure that we just take away the things that we don't want him to worry about. We just want him to focus on trying to stay as well as possible for as long as possible and let us as a collective, as a group, as a rugby family, take care of the rest. And from all corners of the world, there is just nothing but an outpouring of love for a player that is universally respected for the way he acted on and off the field.

12:25He was so competitive during his playing career that I find it hard to believe that there was ever a game that he went into thinking we can't win this. But this challenge that's in front of him is a different one because we know, he knows, that there is only one way that this will end.

12:42Dr Mike Rogers:Yeah, and that's where he... Obviously Lewis found it tough in the interview he did, just looking into the future. For the moment, it seems he doesn't want to go there just yet but we're all terrified for him we've seen some obviously there's there's hundreds of thousands of people who've suffered from MND over the years but rugby in the past four or five years whether it be league or union has seen giants of the game humbled by this terrible disease and And currently that fate awaits Lewis, but not yet. And so in the meantime, we'll be there for him. And I know he will, to keep going back to that phrase, he'll get busy living.

13:31You weren't averse to a bit of the contact during your Peléan career as well. I mean, have you ever sat, you know, and worried that perhaps there might be something at some point in the post for you? Is that something that you and your contemporaries ever think about?

13:45Dr Mike Rogers:Not once did it cross my mind whilst I was still playing. It wasn't a thing. On a personal level, there's nothing alarmist in this. I can't remember anything about any of my games. I mean, people go, are you not worried about that? I think my brain was so full on match days of whether it be excitement or anxiety or fear or joy that it simply couldn't... It was in the present, But it just wasn't registering in the long-term part of the brain. And that's how I look at it. And so on the back of that, people say, well, just take care of yourself. So England rugby in a very diligent capacity now, any player who's played for England at any level has the ability to have a full brain scan, full check to understand.

14:35Dr Mike Rogers:And as always, I fell off a bed in Rome when I was one and cracked my skull. So there's elements of white on the brain which suggests there has been some trauma, but actually everyone will have some white on the brain. And sorry to the doctors are listening, I'm just calling it white. But the key is to monitor that and to make sure, is it getting any worse and how's that going? And so on all my cognitive tests, I came through all those. So I feel very lucky, unfortunately. Lucky is the wrong word. I feel that I played a sport I loved and I would do it all again a million times and love it. And in the aftermath of it, I will monitor and do everything I can to try and stay as fit physically and mentally as possible, doing things that continue to stimulate.

15:15I mean, you mentioned there are others, and some giants in the game have been brought down by MND as well. And one of those, of course, was your teammate on the 1997 Lions Tour, Doddy Weir. And he took his diagnosis and he ran with it and made millions in research. I mean, you knew Doddy.

15:33Dr Mike Rogers:Went up to his farm a couple of times and certainly near the end, and it was half past nine in the morning and he said, shall we have a sherry? Half nine. Yeah, so you cope with what's going on in your life in very many different ways and I rolled out of there and those that want to live and continue to live find a way and Doddy was a shining light on that front and Kate and his boys picked up that baton and I know that Jill Douglas and the whole team behind My Name's Doddy, and they're linked with the MND Association, and they're doing all sorts of research, because I think, I don't want to again paraphrase, but words on the opening page of the MND Association website is, as yet we can't identify the single cause.

16:29Dr Mike Rogers:And so whilst that takes place, we must monitor it in terms of rugby and contact, but also support in terms of do as much fundraising as possible. I speak to Kevin Sinfield regularly. He's got his seven ultramarathons starting on December the 1st. I will join for five kilometres, just run alongside him because he's an awesome human being. But all this fundraising must continue to take place in order for us to try and get a clearer understanding of why this is happening. I suppose the one thing that links Lewis Moody, Doddy Weir, Rob Burrow, So, you know, it's that they were at the top of their game, that they were professional sportsmen and that there were many, many times during their career when backs were against the wall and yet they kept on going.

17:12And you saw that with Doddy and you saw that with Rob and I expect we will see that with Lewis, won't we?

17:17Dr Mike Rogers:Yeah, absolutely no question. But I think Lewis is aware that, I think often because these are the strongest of the strong, these are Herculean men who are, or these examples of Hercules men have been decimated. I think that's where the public just doesn't want to see people performing such heroic feats and being, in a way, decimated. I couldn't believe it. Doddy Weir was a hero of mine when I was younger. And you watched him play, and the way which he, you know, louped round the park with a big giraffe and the cheek that he gave to the England players on so many occasions. and then to discover that, you know, he had this condition and then to see the decline.

18:03Yeah. It was almost disbelief. And I think nothing rocks us more

18:11Dr Mike Rogers:than to see our heroes brought to their knees. I think that's a human emotion, a psychological reaction because the reality are, the stats are, that I think one in 300 of us will die of motor neurones disease. It's that prevalent. and it just so happens that there seems to be this very small, cruel cluster that's taken place in amongst some of our legendary rugby players over the last 20, 25 years. I think probably the most prominent early one may have been Jost van der Vestesen, who was one of my all-time heroes and just couldn't believe that it had happened to him. So it's the rawness of understanding that we will see Lewis deteriorate and we must help and support him everywhere we can, but I will always remember Lewis as a 21-year-old kid throwing himself in front of moving trains, coming the other way, all in the cause of his country.

19:16Dr Mike Rogers:and the most passionate Englishman rugby player you could ever hope to find. For more information about the condition, you can head to the mndassociation.org website. You can also find details of Lewis's GoFundMe in the notes attached to the podcast. The Sky News Daily is back again tomorrow.

19:40How does a banana trigger a CIA-backed coup? Do AirPods herald the arrival of a new global order? What do LED lights say about the future of humanity? I'm Ed Conway, and in each episode of my new podcast, Stuff Matters, I take an object, crack it open, and reveal the world-shaping forces hidden inside. This is economics told through the things we think we understand. Search Stuff Matters on your podcast app to listen and follow.