S2 E2 Ian Johnston: Epilepsy, Exercise, and the Psychology of Sport with Seizures (FULL TRANSCRIPT)

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IAN: If you look at the statistics in the UK, 40% of people are completely inactive. No exercise at all and, you know, difficult to get motivated, difficult to do anything. And subsequently there are co-conditions, so it might be diabetes or obesity - whatever those happen to be. But for people with epilepsy, the number is nearer 80%. So straight away, we're talking about 40% of the population in the UK who have epilepsy, who stopped doing exercise. And my research looked at that 40% of people and found out why they’d stopped doing exercise. And would they go back if they could have a look at a plan that I sketched out for them?

FRAN (in studio): Hello Adventurers I’m Fran Turauskis and you are listening to Seize Your Adventure. I just want to straight away ask you to pause and think about the statistic you just heard my guest say. 80% of people with epilepsy are inactive, which is double the general population of the UK.

You might remember that last year I did an episode called “Can I Do Adventure Sport with Epilepsy?” And in that episode I talked about a table from the International League Against Epilepsy that is, currently, the most in-depth and diverse guidance we have for taking part in sport and exercise with epilepsy.

Well that table was sent to me by today’s guest, Ian Johnston, who at that time was in the middle of writing his dissertation on the relationship between Epilepsy and Exercise.

Sport and exercise has always been a part of Ian’s life. He’s taken part in pretty intense running races since he was a kid, he worked as a football coach, and he spent family holidays dabbling in adventure sports.

But when Ian was diagnosed with epilepsy, that all changed. When he was 48, Ian started having tonic-clonic seizures for no apparent reason, and his life went from being very active to very sedentary.

In today’s chat, Ian talks about some of the reasons that this might be, and why other people with epilepsy might also be inactive. We’ll hear how Ian’s epilepsy diagnosis was what pushed him to go to university and study a degree in Clinical Exercise Physiology. And we hear more about his dissertation, which was titled “The influence of epilepsy on habitual physical activity and the propensity to change based on an approximate understanding of seizure time.”

Don’t worry, it is not as complicated as it sounds. But do get ready to learn a lot. This is my chat with Ian Johnston:


FRAN (to IAN): We’ll go into, a little bit more, the ins and outs of the master's degree that you took because you sent across to me your dissertation. And it was, if you excuse the pun, quite mind-blowing in terms of some of the things that you've looked into, and how little information you had to go on as well. So we'll go into that a little bit later on. If you can tell us a little bit more about your life pre-epilepsy. So you were saying you were 48 when you had your first seizure. So did this come completely out of the blue? Or was there anything that triggered it?

IAN: Absolutely out of the blue, as far as I know. And I’ve tried to look back and compare with when I had subsequent seizures as to whether there was any kind of pattern. There was nothing really going on in my life at the time, so, you know, when people talk about the big stresses in your life, of getting married, or divorced, or buying a house, or all these big things… There was none of those going on at the time. It was, you know, completely out of the blue, so really unexpected.

FRAN: Can you go into a little bit of detail about what your life was like before diagnosis? Because it was very different to after diagnosis, wasn't it?

IAN: I guess typical of lots of boys and young men, I was completely into doing sports, I guess from the age of about 10, I tried to play football all the time, as much as possible. When I was 12, the Great North Run started and we did the Great North Run when we were 12. You know, against all of the safety advice now where you've got to be 17 or 18. Since about 2000, when my first son was born, I've probably done a marathon every two years, maybe every three years. So a lot of training, continually doing a lot of training. We would go on family holidays, doing adventure stuff: skiing holidays, going to the Lake District and going up and down hills. All the kinds of things that an active person would do and that literally stopped overnight for me.

FRAN: I think-- you say an active person, but it sounds to me like you're a little bit above the average of active there. I think for some folks that aren't familiar with the Great North Run can you just tell us exactly what that one is? Because to do that when you were 12, did you say--

IAN: Yeah.

FRAN: --is quite an impressive start to your active career, as it were. So can you just tell folks exactly how long that run is?

IAN: The Great North Run. It claims to be the world's biggest half marathon currently. I think there are maybe 50 or 55 thousand participants. But in the early days when it started, it was just some kind of magical thing. Distance running was becoming popular. Brendan Foster had just kind of finished his career, and Cram, Coe, and Ovett were big news at the time so we kind of got the bug of running. And we just thought, “Oh, it’s another run. We can do it”. And being 12, you just did a bit running beforehand and then cracked off the half marathon. I think we did alright, but I think that was certainly the keenness and the fact that it was such a big event. And it attracts people from all over the world now and you get half marathon world best times - but not world records because it's on roads but the terrain’s up and down so they don't really count it for world records. But it's a super fast course and the atmosphere's fantastic.

FRAN: When you talk about it like that, it makes it-- I think even non- runners listen to people speaking about the big races like that and it gives you a little bit of incentive to try and do more--

IAN: Exactly.

FRAN: --and try and do races like that where everybody is running towards the same goal in the end.

IAN: It's definitely part of the bug that I have, or had, for doing running and exercise and outdoors pursuits really.

FRAN: And that was your life for most of your adult life, essentially. And that kind of running takes a lot out of you, but you were saying when you started having the seizures it was even more draining. Can you go into a little bit more detail about how the tonic-clonic seizures in particular affected your energy levels and how that stopped you essentially?

IAN: I think, to start off with, I didn't really think that I was impacted in any way because I didn't really know what was going on after having a couple of seizures overnight one night. And when you go and see the consultants they don't give you a diagnosis, so I just assumed that it was business as normal. So, apart from, you know, three or four days afterwards when you feel tired after having the seizures, I was on track to do a marathon locally to where I live in the northeast of England. And it was just part of my-- I was in the regular training regimen. I think it may have been about four months before the actual run, but once the second lot came along - which was only about four weeks later - I found that I couldn't do anything. It was when I started taking some anti-epileptics, and that meant that I was too tired. I was physically too tired when I woke up in the morning to contemplate doing anything let alone going for a run. I was pretty much glued to the sofa, watching daytime TV and not doing anything, you know. With no work to do, I couldn't get the motivation to get out of the house very much. So [it] absolutely physically did me in and then the tablets followed on to make it a double whammy, I guess.

FRAN: And, because of this complete change in your lifestyle, this is why you decided to go and do your degree, wasn't it?

IAN: Yeah.

FRAN: Was it Clinical Exercise Physiology?

IAN: That’s the one, yeah. It’s got quite a lot of letters in it when you have to write it down on forms but that’s it.

FRAN: So was this your very first one? Was this the first time that you went to university?

IAN: I've studied before - I did a diploma in technology. But what I decided to do was that because I was into coaching and because I was so much in the sport, I decided to do something in sports science. For me, not being able to do exercise was probably psychology-related. I wanted to understand about how to do coaching with people who needed some kind of psychological assistant. You know, I'll not say psychological help because I wouldn't call myself a psychologist. And from there, I started to hunt round to do something along the same sort of lines, but something that would be actually useful. The journey to actually find out what sort of course to do was quite difficult. If you [11:06] come from a sporting background, getting on anything that's something which is clinical or vaguely related to health is pretty challenging. Because a lot of the Masters [degrees], if you're going to do something clinical, you would have to have done some kind of prior degree course - you know, maybe nursing or physiotherapy or something along those lines. I ended up with Clinical Exercise Physiology, or a research Masters where you could pretty much choose what you wanted to do yourself. And I thought, being 48 or 49 I was by the time this had come around-- for me being that age, I would prefer to have some taught elements, As it happens, I absolutely needed them because I needed to learn a lot of new things before I could then go on and do the research part of it.

In simple terms, Clinical Exercise, Physiology is learning about a condition, or conditions, and then doing some kind of rehab programme. And if you did a rehab programme, what sort of precautions would you take? You know, make sure that people's diet, exercise plans, and a whole plethora of things will be in place. It was all brand new stuff, so learning how to take blood, all sorts of stuff, like taking ECG measurements. I mean, not that we would have to do anything from a nursing perspective, but if you're going to do a programme for somebody with a clinical condition, you have to understand all of those different elements. Believe it or not, the condition that I chose to do in my study was epilepsy. It's slightly different to, I think, everyone else who's on the course. I think everyone else had picked one of the traditional conditions, so there was lots of people who did about obesity or osteoporosis. The big killers, if you like. The ones that have the biggest impact in the UK, But I I chose to do mine about epilepsy.

FRAN: Yeah. I have a couple of questions from that. One thing I was thinking as you were speaking is: did seeing things from the other point of view give you a bit of an insight into your own condition? Do you think that helped you?

IAN: Well, when I started off, it was all a bit new and nothing seemed to be familiar. And then, when I started doing the first part of the research, I started stumbling across things that I looked at and went “Oh right, that's what's happening”. You know, not claiming to be an expert, but understanding the sort of things that are happening inside your head when you have a seizure. And then reading about it again, and again, and again. And then finally the penny drops and you think, “Right, that's what's happening to me”. And then from there I got such a bug and such an interest, really, which really got me doing all the investigations and a whole bunch of research that-- I would never imagine I would ever have that amount of interest to do anything in really. But when you start doing the research and you go down different paths and you find, “Oh, well, this is about the health perspective. This is about tiredness. And why do people have seizures? What role does alcohol play?”. Because that's a really big thing in my mind, “Oh, it’s all alcohol”. And then find out the details: why do people really have more seizures when alcohol's involved? And some of the research says it's because, when people are drunk, they forget to take their tablets, and that's one of the most common reasons for alcohol being involved. Or, if people are sick. Added together, all those little bits and pieces point the finger: if you're involved in alcohol, even just on a regular night, out in the pub, having a couple of pints, then that can impact you. It's getting to understand those things that aren't just the headline banners that you see in the newspapers. It's actually where the stories originated from in the original research. So from that perspective, well, it was more than a full time job, really. I probably did too many hours.


IAN: It was kind of the opposite of a stereotype student. I produced a nice dissertation by the end of it, which I thought-- And I would like to call myself a Master if that's not being too boastful. But as far as being an individual with epilepsy’s concerned. I think it has been absolutely invaluable. And I think I've done myself a good job.

FRAN: Absolutely. I think it's definitely worth calling yourself a Master. I would be walking about saying it to everyone. If you can just explain the main question that you asked in your Master's degree. So it was about at the time of day that people have seizures.

IAN: Yeah. One of the key things of my research was to find out, for any individual, if there was a specific time of day when they would exercise, given a few different pieces of information. And the primary bit of information is when they are less likely to have a seizure. And I know that people don't always have seizures at the same time of day, and I know that if you regularly have seizures a certain time, that doesn't prevent you from seizing at different times of day. There's a whole range of evidence that you go off to say that this individual is likely to have a seizure under certain circumstances.

If you look at the statistics in the UK, 40% of people are completely inactive. No exercise at all and, you know, difficult to get motivated, difficult to do anything. And subsequently there are co-conditions, so it might be diabetes or obesity - whatever those happen to be. But for people with epilepsy, the number is nearer 80%. So straight away, we're talking about 40% of the population in the UK who have epilepsy, who stopped doing exercise. And my research looked at that 40% of people and I found out why they’d stopped doing exercise. And would they go back if they could have a look at a plan that I sketched out for them? And approximately 70% of the people who did no exercise said that they would do it if they were convinced that it would be safe, or they could be convinced of a safer time and circumstance to do their exercise.

FRAN: Did you find in your research that that was quite difficult to find research that had been done previously?

IAN: Certainly the area that I specialised in. There may be some stuff out there, but I could not find anything that would help me explain, in research terms, why people would stop doing exercise when they got epilepsy. There was nothing that would help you come to that conclusion. There were lots of supporting types of research, and there's lots of different bits of background that I would have to pull in and piece all these different bits together to go, “Right, okay”.

And then I kind of realised myself that it wasn't because I couldn't go out running anymore - because physically at the time, I probably could - but it was definitely my brain saying, “I don't want to go outside and fall over and be knocked down by a bus, or go for a swim and then sink to the bottom and not come up again”. The swimming one’s the prime example for me because my wife's a lifeguard. And, I still-- to this day, I still won't go swimming even with her lifeguarding. And I trust her implicitly. It is psychological and it is something that you can overcome somehow. Part of the Master's course was understanding how to, how to deliver some kind of psychological intervention to get people to do stuff.

But once I got going on the research, I thought, “Well, why don't I just do this exercise?”. I went to the university gym and I joined and I could literally only lift the bottom bar on the weights machines. And then you know there’s some people on the course - who had been on the course with me - were looking at me, going “You can only lift the bottom bar on the machines?” And I realised that, you know what? It didn't make any difference. I could actually do it. You know, if I did keel over or whatever might have happened, I was gonna be alright. And because I was on the machines, the gym, instructors were great and they were all informed about what my condition was. I just started doing it, and got back into it basically because of what I'd seen in my research.

FRAN: I think that's brilliant and it's really telling-- like you say, just making that decision to go out and do it. It's something that I think a lot of people find very hard - I know that I am one of them sometimes. It’s very interesting to hear you talking about the swimming because I have just started swimming for the first time in years. And it is very psychological with me in terms of how well I'm doing at the moment.

IAN: Yeah.

FRAN: I’m having to have a lot of talks to myself at the side of the pool about how safe I am and that kind of thing. But the other thing that you displayed quite nicely there is the idea of adaptations, which is something that a lot of people I've spoken to have talked about.

IAN: Yeah, if you avoid anything that's gonna be a potential risk at all. Something that I've done for the year on the Masters is I started doing the exercise again. And this wasn't a requirement of the dissertation, but I did a sample programme or an idealised programme for a mythical person who had epilepsy. So that was another sideline, if you like, that I added on to my dissertation, which I probably didn't have to do because it probably didn't really add too much to it. But I put together a programme based on how somebody could a) be encouraged to get back into doing the exercise, b) do it safely, and c) be told and let them understand how it was safe. So the sort of things that I had in there were: don't go on a treadmill because if you fall over then you can bang your head. Don't necessarily go on an exercise bike because you're high up, and you could fall over.

And I came to the conclusion, for that particular set of exercises, that it was a rowing machine for a couple of reasons. 1) Because you're sat on a chair, which is probably about 10 inches from the floor. So if the worst came the worst and you fell over, that's the least amount you could fall. And you can also buy adaptations. There are certain seats or chairs - I'm not quite sure what you call them on rowing machines - that serious rowers and professional rowers practise with so that it's in the shape of what you'd actually sit in inside the boat. You can actually get big Velcro pads that Velcro you in so if you did have a seizure, you wouldn't even fall off. You'd still be in place and you would be protected to some degree. So doing bits and pieces like that to help make it safe... In my mind, that's something that I could use from a psychological perspective to say, “This can help you. This can safeguard you. This can put something in your mind that's gonna put your mind at ease, if you like”. and say, “Look, we've done absolutely everything possible, and if it happens, it happens. There's nothing you can do about it”.

FRAN: Yeah. And you say that that was surplus to requirements as it were with your actual degree, but I think that that is one of the most important things with this kind of research and work. It's that being able to apply it to a, in this case fictional, woman, but then being able to take that out into practise at some point. Now that you've done all of the research, have you started looking into doing it in a bit more of a practical way?

IAN: I have, yes. But there are a couple things that kind of stumped me at the moment. There's very little in the way of training programmes that you can copy from. I think I mentioned before that there's a Bible: the American College of Sports Medicine book. That's the volume, the book that you get that everyone prepares the exercise plans from, based on what the American College of Sports Medicine says. Here's a handy copy I've got in front of me. If I look through, for example, let’s say diabetes. There’s 30 pages on diabetes and what you should look for and bits of the background. If you turn to the epilepsy page, it’s five pages. There's very little you can actually understand, so there's pretty much no opportunities to go and learn those things. So that’s kind of given me slightly less confidence in being able to deliver a programme. I'm happy to design the programme, but actually delivering it would be more difficult because there'd be more hurdles to overcome to actually get somebody to say, from a medical point of view, this is the right sort of thing. Because the interest just isn't there.

But on the plus side though, for my local epilepsy support group, I would quite happily say to somebody, “These are the sort of things that I would talk to you about. I'm not gonna recommend anything because I'm not an epilepsy clinician. But this is what I've done and this is-- here's the evidence. I've done all this research and I know that these sorts of things happen, and these are the tools that you should use, and these are the safeguards that you should do”. You know, it's just simple things. Like - seemingly or apparently - some people have their seizures triggered by going to exhaustion and doing an excessive amount of exercise. Whereas some people do a smaller amount of exercise and suffer the same fate. And some people, when they do resistance training, that might trigger a seizure for them. Then when you look deeper into the research, you'll find out it's the exact opposite for some other people. It was difficult from that perspective to work out how I’d take it forward in a career. It's kind of like a clinical version of a personal trainer.

FRAN: It's certainly helpful for people to just know that they can just-- again, it comes back to this adapting things to your own own abilities, essentially. And your own preferences.

IAN: I mean, for me the idealised time for me to do exercise and, taking into account all of those different bits and pieces I put in, was approximately one hour before sunset.

FRAN: I mean, you say approximately, but that's quite precise, and that's really nice information to have.

IAN: I mean, that's for me. And that's using a whole bunch of things, like your circadian rhythm. You know, it's not the time of day, but it's whether it's dawn or dusk. And all this is a vast amount of information that you can only piece together for an individual. I'd be quite confident now, saying to Ian Johnston in 2017, “This is what you should do”. I'd be pretty confident saying that to me. There's my exercise time of day.

FRAN: Yeah, it's beautiful. With this information, as you say, it's very difficult to give somebody else any advice, as it were. But would you say that there's anything in particular that people could take to their doctor or ask their doctor to do something similar - on a much less scientific level - if they're going to do things themselves?

IAN: Well, there's a couple of things that I would say straight away. And that's make sure that your doctor is somebody who - even if it's your epilepsy clinician - find out if they know about exercise and epilepsy, because it's a very small circle of people. I got on the phone to a guy in Portugal, a guy in Brazil, and a guy in Norway who-- I’m kind of like a fanboy for them now because I followed all of the research that they all published. There are very few people who are really into it. And if you speak to other different clinicians, they’ll say, “Well, you know, it's up to you”, and “You should stay fit generally”. So you need to find somebody who will buy into the idea of, “You should do exercise, based on this information I know about you”. And if that's the case, I would say the primary thing to go off is: keep a detailed seizure diary. For any individual, have your detailed seizure diary, and you'll know yourself when you’re likely to have seizures. Try and put as many of those things together as you possibly can, and try and work it out yourself. And take the evidence to your doctor and say, “This is what I’ve found. What do you think?”

FRAN: And how are you doing exercise these days? What's your regimen now?

IAN: Well, from the day I started doing my exercise - and I can honestly say I didn't have some kind of epiphany and there was no big lightning strike. My first sort of exercise, apart from doing very minimal resistance exercising in the gym, was my pals knocking on the door and walking the 500 yards down to the seafront and walking along the beach. That would take 45 minutes to an hour to walk a mile in total, maybe two miles in total. So that's where I was at the start of that process. And then I just started doing stuff again. I didn't have any particular plans. I felt that I could go running and do more distance. I started off by running some 5 km races, which, in total, they might have lasted 35 minutes, when I started. Now I'm pretty much doing them in 19 or 20 minutes [which] in the particular run I do is about third or fourth in my age category, which--it’s pretty good. So I’m using that as the basis for doing some more runs with the idea that I've put my name down to do a marathon later on this year.

FRAN: That's fantastic.Which one are you looking at doing?

IAN: I'm doing the Kielder Marathon which is on Kielder Reservoir, which is in Kielder Forest in the north of Northumberland. It's right on the border with Scotland and it's a fantastic place. Fantastic countryside. It's one of the few dark sky areas in the country. We can see all the star constellations at night time. There's no light pollution. It's an absolutely fantastic place. And after having done lots of city marathons, this will be my first marathon that’s in the countryside. You run around the reservoir and you're inside the forest the whole distance. So that's my extra incentive for my training, and that's to get fit enough to do a decent time. And a decent time for me would be quite difficult there, because it's, whilst it's not up and down mountains or anything, you might describe it as being undulating. It's the event for me. I think there are only maybe two or three thousand people who do it.

FRAN: That sounds fab, So, middle of October is that one? I might have to put that in the diary. Are there still spaces for it? [LAUGHS] That sounds beautiful.

IAN: I think so. We went up for a family holiday there. We had two days of freezing cold rain. And, on the third day we were there, the sun came out and we were in the trees in a small guesthouse, and it was just fantastic. And I thought, “Well, yeah. If that’s somewhere I can do the run, then that's that's gonna be it for me”.

FRAN: The name of the podcast is ‘Seize Your Adventure’. So what is your adventure? What does adventure mean to you?

IAN: It's definitely different to what it used to be. Because adventure for me previously would have been going on holiday somewhere where you've never been before. So somewhere in the middle of China, that kind of thing. But adventure for me now is really just doing sports with my kids,


FRAN (in studio): As always, Ian and I were talking for much longer than I could fit into the episode today. And the topic veered into some less relevant aspects of neuroscience and big data. If anyone else is interested in that more technical side of things, you can get in touch with Ian to ask about his dissertation. He is very happy to chat to anyone about the dissertation itself, forming an exercise programme, or anything else. The contact information is in the shownotes for you.

[To] anyone who is interested, I will be uploading a longer version of this interview to the Seize Your Adventure Patreon page. So, Patrons at the Adventure Advocate level and above will be able to listen to that longer interview after the weekend.

I would like to give a massive big thank you to my current Patrons. I can’t tell you how happy I was to see that $10 go into my account and, even though it has already gone straight out to pay for my email address, it does mean a lot to have that support. If you are in a position to support financially, and you do find value in the work that I do with Seize Your Adventure, please do head over to patreon.com/seizeyouradventure. You can become an Adventure Ally for $3 a month and there are various levels of support, all the way up to Producer level at $250 a month. That helps to produce and pay for one full episode.

I know that not everyone can support financially, particularly at the moment, and I still see you and appreciate all of you. Please do keep sharing the episodes around - let me know when you do so I can thank you personally.

I want to give my guest the last word today. At the end of the conversation, Ian told me about some of his influences, including the footballer Leon Legge and the sports coach Daniel Bedeau. Now, apologies to Daniel, neither of us could remember his name as we were recording. But please do go and look him up: Daniel Bedeau! So I will leave you with Ian’s thoughts on that. And until next time: Safe Adventures, everyone.

IAN: There's definitely something I would say to anybody who’s interested in doing this kind of thing. Even though I'm a middle aged married man with kids, I'm a fanboy of quite a number of people. And I've hunted some of these people down from Instagram, from Twitter, from LinkedIn, and, basically, from writing emails to people. And the people that I’ve found are people who are an inspiration, or have helped in some way.

So, for example, the latest person who I’m a fan of is a footballer called Leon Legge. Now, he's recently been on TV, talking about his epilepsy, and he started off a blog himself. And I’d previously been in touch with them because he promoted my research, and got some people to take part in my research because of the number of followers that he had. And finding those people for me, if anybody wanted to get, not necessarily inspiration, but some comfort that there are other people who are thinking about the same kind of things.

So there's him and there's a guy - I wish I could remember his name. He's a sports scientist for Watford Football Club, and he was on Sky News at the weekend and it was fantastic. He explained that he worked in sport and that you can work in sport and people would look after you. And if you wanted to do exercise, people were there to help. Because he was in this privileged position of working for a professional football club, he was able to put that message across and it was fantastic.

So there's a whole load of people like that who you find by hunting around. And, previous to that, you sit thinking it's all doom and gloom, and there's nothing you can do. And who can you speak to because you've never heard about epilepsy before. You don't even know what it is. It's something to do with people having fits - that's the extent of my knowledge beforehand. But if you hunt these people out, you can find lots of good stuff.


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© 2020 by Francesca Turauskis.