Did rugby give me dementia at 40?
How repeated bumps to the head in sport can add up to dementia later in life…
In this episode
00:45 - Alix Popham: the dangers of repeat concussion
Alix Popham: the dangers of repeat concussion
Alix Popham, Head For Change
One man who knows about the devastating impact that repeated bangs to the head can have all too well is the former Wales rugby union international, Alix Popham. He was diagnosed with early onset dementia in 2020, when he was just 40. In the years since his diagnosis, Alix co-founded the Head for Change charity - which seeks to raise awareness about brain health in sport.
Alix - It's a strange, strange feeling. Rugby was my life from the age of four. And to achieve all that I did, I am proud. I just wish I knew what I know now whilst I played the game.
James - Rugby's obviously a game all about full physical commitment. You were a prime proponent of that. To what extent though, were you aware at the time that you were putting yourself in harm's way?
Alix - Well, we weren't given any education really on the word concussion. I don't like using it because it softens what it is. It's a TBI, a traumatic brain injury. We weren't told much about that issue. It was almost treated as a joke when you were doing analysis sessions of the game or training. You would see somebody stumble around and they would rewind it and play it again and yeah it wasn't taken seriously. So this is where things need to change.
James - If you don't mind me asking, when did the first signs of your dementia start to become apparent to you? Was it while you were still playing?
Alix - No. So, as I said, I didn't know a lot about concussion or traumatic brain injury. I thought that I had two big KOs that were my concussions. So I didn't think I was that unlucky. I started talking to players that I played with, players I played against my mum and dad, people I knew and they were saying, what about that one, what about that one? What about that one? And I had no recollection of those. And they were the ones that were in games because my friends and family didn't come and watch us train. So there would've been more, but the big one in all of this is the silent killer and the sub-concussive hits. And that is literally every contact that you're involved in is causing a small amount of damage. And the amount of contact we did as players during my career was insane. And those are the things that we can control with current players so that the future is in a lot better position.
James - Mm-hmm. <affirmative>, when it comes to your diagnosis, what was the story there? How did you go about first seeking a test?
Alix - Yeah, I was most probably in denial. My short-term memory was terrible. Taking in information, audio and visual, reading emails and things like that was really bad. And I was putting it down to everyday stress, kids, new business, everything like that. That was middle of 2019 and my wife Mel, was trying to get me to go to the doctors and I was just putting it off and kicking the can down the road. And then I went on a bike ride that I've got into cycling since finishing playing. And it's a loop I've done many times from my house. And I got lost on this bike ride and it was a scary moment, phoned Mel, and ended up cycling back the way I just came and the following day went to the doctors. This was September, 2019 and that's where the testing started with the scan that ended up picking up the five areas of damage on my brain.
James - Wow. So the penny dropped. What did the doctor say and what was it like to deal with that news?
Alix - Well, it was the middle of lockdown April, 2020. In a strange way, it was a relief that there was something showing on the scans and with my neuropsychological memory testing and all that it was below average for my age and it just gave me some answers. Obviously it was great news, but I've put things in place and tried different therapies and things like that to help and support me really. So yeah, it was a mixture and I've had a bit of a roller coaster with emotions for the first couple of months after that diagnosis.
James - That's completely understandable.
Alix - Yeah. And unfortunately I've talked to hundreds of ex-players, and that was one of the first things when I had my diagnosis, I can't be the only one. And then I started talking to players I played with and against and over 50% of them were struggling in some way, shape or form. The neurologist who's diagnosed in the players believes 80% of the people, players from my generation, will have brain damage, some sort of brain damage.
James - Steve Thompson, the England international rugby player has spoken of the enormous help you were when he was going through his diagnosis, but you're raising awareness in other ways as well, aren't you?
Alix - I was learning on the job really because there was no real information out there. Support for somebody in a family of somebody who was 40 years of age and that's why Head for Change was born. And the support that we give because some players wouldn't have contacted their GP that you need a neuropsychologist, you need an occupational therapist. And putting those things in place, you need to be active and just get those simple things in place to make a difference. And I know from emails and messages I've had off people, we have been a great support to the ex-players and their families.
James - What an amazing thing to have done. So what does a safe future for rugby look like? Can that even exist?
Alix - The conversations we are having now in rugby were happening in boxing a hundred years ago. In 1977, they realized traumatic brain injuries in rugby were an issue and it just was pushed under the carpet and wasn't taken seriously and that information wasn't fed to everybody who played. There has been more noise and awareness since myself, Steve Thompson and Michael Lipman went public almost two and a half years ago. But there's still a lot more that we need to do. And for me, the game on a Saturday is as safe as it can be. There's a couple of areas around the ruck substitutions that you could look at to make it safer, but what we want to change in the game is what happens during the week and shouldn't be left down to the player of 'do you have symptoms anymore?' Because most rugby players are, rugby players in general, are gladiators and all they want to be is on that field and they're not going to show weakness. They're fighting for their next contract. They're fighting to keep themselves in the team or they want to be in the team also. The length of the season in rugby is a 10, 11 month season. So their brains are permanently inflamed from all the contact they're doing week to week. So there's a lot that we can do to make the game safer that currently isn't happening. I'm passionate about this. I still love rugby. I want it to survive, but it needs to be in a safer position because the number of parents that are sending their kids to rugby at the moment is going down. And I don't want that to happen. But I wouldn't send my kids at the moment in the present state of rugby. Rugby needs to get this right.
08:25 - How does a concussion affect the brain?
How does a concussion affect the brain?
Willie Stewart, University of Glasgow
What exactly is concussion? The University of Glasgow's consultant neuropathologist and leading expert on brain injury in sport, Willie Stewart…
Willie - From a neurological point of view, a concussion is a form of mild traumatic brain injury. And that's important, that traumatic brain injury, because we're injuring the brain. But the second part of that, the neuropathological aspect of it, so what's actually happening in the brain, is much harder to answer at that moment. We just don't really know with great confidence, but what we think underlies it that the brain twists inside the skull. Imagine a bowl of porridge, which is slightly congealed, and if you spin the bowl of porridge rapidly, the bowl moves at one speed, but the porridge moves slightly behind it. You can see the fractures and tears appearing on the surface. It's a bit like that. So the skull moves slightly ahead of the brain and that difference in speed, the way they move, and the torsion that creates deep inside the brain just begins to stretch and tear the fine fibres.
Chris - Presumably then, there's almost what we dub in medicine, a 'dose dependent effect', that the more head trauma you get that makes this happen, the more prone you are to having problems.
Willie - That certainly would seem to be what we believe. We have evidence from our studies on former professional footballers showing that the longer they play or play in a position where they have more head impact and more risk of head injury, then the risk of long-term problems is higher. So yes, we believe the dose of injury is quite an important part of that. What we don't know is what else contributes to it. It may be that there's some genetic contribution to this as well. So injury is really important. That's the primary thing we see as a common denominator in all the cases we've dealt with. But there must be something else because we know that there may be a defender who heads a ball 70,000 times and his teammate heads a ball 70,000 times, but only one of them develops dementia. So the dose of injury is one thing, but there's other things as well, and it may well be genetics, other lifestyle factors, things that perhaps we might be able to control and modify.
Chris - So when you look inside the brain, do you see anything in the brain that gives you a clue as to what might be going on?
Willie - Well, what we see is the things that people hear about a lot of. We hear about the dementia pathologies, this abnormal protein that could be deposited in brains called tau protein, which we sometimes see in other dimensions as well, like Alzheimer's disease. But we see it particularly in this head injury associated with dementia or chronic traumatic encephalopathy. But we also see other proteins deposited too. And we're also beginning to see things like chronic inflammation in the brain. The blood vessels in the brain are beginning to look a bit leakier than they should be. And these fine fibers, the connections between brain cells are also showing signs of damage and wear and tear. So there's all sorts of other things happening, which we think probably are the connections between brain injury on the day and many, many years later - the long term problems that can occur.
Chris - So how do you tease apart what was heading the ball and what was lifestyle in general? Because I put it to you that it could be that a person who plays a lot of football also has a rip roaring healthy social life or perhaps a rollercoaster habit. And all of these things are going to shake their head around and could also damage their brain. So is it straightforward that it's definitely the traumatic injury or could it be something else that's playing a role?
Willie - What we do is we look across a number of different levels of evidence. So we've looked at footballers, we've looked at rugby players, we've looked at American footballers, wrestlers, ice hockey. All these are different sports with different types of athletes involved in them. But the one thing that unites them is that when we look at their brains, they have a specific brain injury related to dementia pathology in them. That's a pathology we can also create to some extent, in a laboratory with animals. So we know this brain injury is an important trigger. It's the one common denominator, but the other things may contribute to an individual's risk of brain injury becoming a problem later in life. Now you have raised two important things. The social life of a footballer, actually believe it or not, that when we look at the data, footballers are generally drinking less than most people in the community. They don't have addiction problems, they don't have depression problems. Yes, we do see the stereotypical character footballer that we all know about, but actually the reality is most footballers are healthier living individuals than you would see in the community. And roller coasters, although they shake you around, believe it or not, I've got colleagues who've done some research on them, and they don't quite shake your head enough to create the kind of damage that we see with, heading a ball or with concussion.
Chris - What about a waltzer? I was always a big fan of those at the fairground. Have I done myself damage?
Willie - Not as far as we know. The kind of forces involved and accelerations involved in those kind of thrill rides aren't quite enough to do that much damage.
Chris - Do we know, though, what the threshold is? Because if someone like you comes along and says to the FA or to the rugger league unions, there is a risk and we need to do something about it. They will say, well what should we do to the rules? Do we ban this outright or do we change the weight of balls? I mean, do we know what the threshold is and do we therefore know how to intervene meaningfully in order to minimize the risk?
Willie - That's the million dollar question. Exactly what is the limit? Where is the risk line drawn? We just don't know that yet. All the best evidence we have is, as you referenced, at dose. So the bigger the dose it would appear, the risk is greater. So that's a logical thing until we figure out exactly where the level of risk comes from to say, 'well, let's just try and reduce the dose for everybody and hope that that works'. With football, for instance, we sit down, have conversations about how much head impacts go on away from the public eye. So how much goes on in training and could we reduce training heading, but save it for the match today. And actually when you look at it, there's an awful lot of heading going on during the week that nobody ever sees. So actually you can really reduce that dose by just working on reducing training heading and that's what football in the UK is doing and I think that would be really effective.
Chris - And lastly, Willie, if I were a professional footballer who had headed 35,000 balls and the rest of my career, I could do the other 35,000 or if I stop now, have I done myself irreversible damage by heading those balls or can any of these changes be reversed or can the risk of lifelong consequences be reduced at any point?
Willie - We set up a study a couple of years ago called Brain Hope and its brain health outcomes and former professional elite athletes. And the reason we we framed it as 'hope', I start sometimes with an acronym and work backwards to the study name, because we've got to have hope that head impacts and brain injuries that athletes have suffered in their career don't inevitably mean that they will unequivocally get dementia later in life. We can't take away the damage. They've headed the ball. We haven't got a time machine yet to go back and stop them doing it, but there's just something we can do. So, what we're doing is looking at other lifestyle factors and risk factors for dementia, which we know of and at least come from the world of dementia and Alzheimer's disease. So what's the blood pressure like? What's physical activity like? What's the diet like? How are they with social connections, their hearing? And all sorts of things that we know about and can optimize these and hopefully try and rebalance the risk in some way.
16:13 - Concussion symptoms remain for up to 6 months
Concussion symptoms remain for up to 6 months
Emmanuel Stamatakis, University of Cambridge
Researchers at the University of Cambridge have found that even mild concussion causes long-lasting effects in the brain. The team - which analysed data from across Europe - say that for almost a half of all people who receive a knock to the head, there are changes in how regions of the brain communicate with each other. The researchers believe that this can cause long-term symptoms such as extreme fatigue, headaches and poor concentration. It comes as governments and sporting bodies around the world seek to address concerns around concussion. Emmanuel Stamatakis has been leading the new study…
Emmanuel - We looked at a kind of brain scan called functional MRI, which is a little bit like an MRI scan, but shows you how oxygen moves around the brain. And in other words, we understand how different parts of the brain activate. And we also looked at how different parts of the brain coordinate with each other. So this technique that has not been used widely in this category of patients, we decided to use it because we have expertise in this area. And we also decide to use it because routine scanning, such as CT or what we call structural MRI, which shows you the brain in its glorious detail, doesn't actually show much after concussion. It's almost nothing. The findings are nothing from that type of scan. So we used the technique we use daily in the lab, which is called functional MRI, and we looked at a specific part of the brain that's quite susceptible to injury and cold, the thalamus. Now the thalamus, we have two thalami, one in each hemisphere of the brain. They're roughly the size of two quail eggs. And they're sitting, give or take, a millimetre at the top of our spinal cord. We know from simulations that Willie mentioned earlier, that those are particularly susceptible to injury. Now we see no damage on the structural scans we mentioned earlier. So we decide to see whether, ask the question whether this part of the brain coordinates differently with other parts of the brain, whether the information, the exchange with other parts of the brain and the rate that they exchange, changes.
Chris - Who did you look at? Because obviously you are interested in people who have had some kind of traumatic brain injury. So were you comparing before and after or people who have and haven't had these sorts of injuries when you look at this part of the brain?
Emmanuel - The data came from a huge European study, which involved about 60 centers all across Europe. And we took a subset of that data. This was a study that tried to understand brain injury. We took a subset of patients that had functional MRI scans and had very little damage or no damage at all on structural MRI. So the subset we came up with was 107 patients and we compared those to near their healthy controls. So this connectivity that we talk about, the synchronization of different, of the thalamus with different parts of the brain, we compare between these two groups.
Chris - And did you see a difference in the people who had had brain injury?
Emmanuel - We did indeed. We did indeed. We saw that the thalamus in the people who had the injury was hyper synchronized with other parts of the brain. It was working harder if you want. It was making an extra effort. And in fact we found that the harder it worked, the harder the thalamus worked, the more likely it was to develop long-term problems such as the ones you mentioned earlier, fatigue, poor concentration, and headaches.
Chris - What's your interpretation of the fact that you see this association between head injury and the thalamus talking harder as it were to other brain areas?
Emmanuel - There are theories about that. The most prominent being that the thalamus works very hard. Eventually it gives up. And in the long term scans in six months and one year after the injury, we see the actual damage it gives up eventually.
Chris - So you're saying that in the short term it tries to compensate for the aftermath of the injury? But in the longer term, you lose that effect. So any compensation you had is gone and then the person may well have residual loss of function.
Emmanuel - Absolutely. Absolutely. That's what I'm saying. Yes.
Chris - And then superimposed on that maybe the additional effects of the injury that Willie was talking about with Alex with respect to possible progression towards dementia.
Emmanuel - Yes. And the next step of our study is to find another subset of patients that had repetitive mild injury, repetitive concussion, and see whether that makes them more likely to develop dementia.
21:14 - Protecting sports players from brain damage
Protecting sports players from brain damage
Peter Hamlyn, Brain & Spine Foundation
What can be done to protect people who are at risk of developing serious damage to their brains? Peter Hamlyn is founder and president of the Brain and Spine Foundation as well as the medical director of Podium Analytics, the youth sports injury charity. Peter is also a brain surgeon and famously saved the life of the boxer, Michael Watson, when he developed a blood clot on his brain in the 1990s.
Peter - The short answer to that is very concerned. The history of it is something I think we should look at. But essentially the problem with the brain is that, although it is full of nerves, it's actually numb. So when it's injured, you feel nothing. That's why we as neurosurgeons can operate on people who are fully awake. And if you are doing that on any other organ, it would be agony. But the brain is entirely numb. So if you hit it inside the skull, it tells you nothing. And yet what you just heard is that it can be injured. And the symptoms, if present at all, can be very difficult to pick up.
Chris - Are some sports going to be more at risk than others? We've dwelled in this program quite heavily on rugby and also football, but are they isolated cases or are pretty much all sports at risk of this happening?
Peter - When this issue first became talked about, it was christened the 'punch drunk syndrome' in a classic paper. And it was pretty clear to people like myself at the time, there was nothing special about boxing or a punch. It was any impact if it was repeated. So it affects just about all sports. So if you look at the ECB, the cricket, they have an entire program now looking at concussion and if you wind back 10 years, people would not be thinking about concussion. So I think to get an idea of how you prevent this or how you'll tackle preventing it, it's worthwhile just looking at that history where we've come from, what the solution will look like and where we are on the journey. And if you like it, it is a bit like trying to cure cancer. We don't know whether we're going to do that next week, whether we're going to do that in a hundred years, but we do have a pretty clear idea of what the answer's going to look like. So at the beginning of this journey, when there were first papers being written by Corsellis, the punch drunk syndrome in the seventies and late eighties, when I got involved, there was a debate about where the concussion was important at all. And I would go to scientific meetings and there would be whole bodies of people as distinguished as myself standing up and saying that actually they didn't think it was, it was a normal physiological response of the brain. You could do this as many times as you'd like and no harm would come. And they almost defined it as such. And that was something that was very difficult to accept for many people, including myself. And if you look at where we are now, everybody knows that repeated head impacts are a problem. We know that head impacts don't cause concussion. What is concussion? Well concussion is the mildest form of head injury that you can diagnose at the side of the pitch. Now, there are other forms of head injury that any idiot could diagnose, but we diagnose concussion with a set of specific questions and tests that look at whether the player is orientated as we call it, in time, place and person. Where are they? What's going on? And that's the mildest symptomatic head impact. But we know that there are problems with head impacts that are not symptomatic.
Chris - What can science throw at this? Or what should we do now because we know we have a problem. We've heard from Alex what currently happens. We've heard from Willie that we don't actually know how much damage it takes or how much energy it takes in an injury and how many injuries it takes to translate into permanent problems. So what do we do in the meantime? How do we go forward from here?
Peter - The eventual answer is going to look something like this. We will have a system whereby we reduce the number of impacts in a career. And I say impacts because it's not the injuries, it's the number of impacts, not the ones that are symptomatic, but all of them. And you do that by focusing on the training, because they do far more training than they do matches. The second thing is that we are going to get much smarter at identifying individuals who are susceptible. As Willie pointed out, not everybody gets affected by the long-term outlook that is long-term effects. And that is very likely to have a genetic substrate to it. We will get better at identifying that, we've started to already. And the third thing is the science and technology behind reducing the impact of any particular collision. And there we have some incredible technology coming on stream. We have some very smart plastics at the moment that, the instant there impacted, turn from a rubbery fluid material a bit like a diving wetsuit into an absolutely rigid structure in an instant. And you can imagine players, instead of wearing the standard rugby head guard, wearing a thing that looks more like a diving suit top that becomes instantly rigid when they collide. So to reduce the whiplash effect of any impact.
Chris - That's encouraging for people who are currently playing the sport because as we always say in medicine prevention is better than cure. But what about people who are in a position where they may have both an amateur or a professional playing career behind them and they're perhaps listening to this thinking, well, is this going to happen to me? Are we in a position to help those people?
Peter - I think it's worthwhile me putting my Brain & Spine foundation hat on here. If you look at the neurological disorders, all patients suffering from neurological disorders are at a distinct disadvantage when compared to people who've got cancer, heart disease or whatever. Neurological disorders are actually more common than either heart disease or cancer put together. But the number of specialists in the UK is incredibly small, so most of them don't have access to specialist care. That's unique to neurology and it's unique to Britain. So looking at how well we are positioned to try and help these people, even with the current treatments we have, we're in a very poor place at the moment, and with that other hat on, that's something we are working on. But if you look at research into neurological issues, there is a phrase - a cure for one is a cure for all. Because once you have sorted out how to cure head injuries, it will be the same therapy that cures stroke, Alzheimer's, all other forms of dementia, multiple sclerosis. we need to crack 'how do you get nerve cells to regrow?' It's called neuroregeneration. And if we crack that, we've solved the problem. It's the equivalent of the cure for cancer, but it's a much bigger problem. More people are disabled by and die from neurological disorders than heart disease, cancer and kidney disease put together.