Ironman meets MND with Sam Perkins

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Tribathlon podcast, finding out how ordinary people do extraordinary things.

And so I've got mnd. I can't do anything about that, but I can control my attitude every day. I can control what I try to achieve with the time that I've got. And so it happened within probably 48 hours that I just switched into that mode and went, right, let's just get on with things.

That was Sam Perkins, and this episode is Iron man meets mnd. Welcome to the latest edition of the Tribeathlon podcast. You know, occasionally you meet someone that changes your perspective on something forever. And in this instance, the something is triathlon. Sam Perkins was as passionate about triathlon as he was about his beloved Nottingham Forest. And then he received the earth shattering news that he'd been diagnosed with motor neurone disease, or MND as it's known, which for those of you that don't know is essentially, it's a terminal diagnosis, it's incurable, and most people are diagnosed with it last less than two years. It really is a horrible, debilitating disease. But Sam is an incredibly inspiring guy and, and he went at this in the same way that he went about his triathlons and his Ironmans, in that he's determined to do the best that he can with the lot he's been dealt. And he only came to triathlon fairly late on as an opportunity to improve his health. And he fell in love with the sport, but it's now that sport that is helping him from a mindset point of view, deal with mnd, because clearly that's the greatest challenge that any of us would ever, ever have to overcome. But he's also using that sport to make sure he enjoys his time and to raise money to fight this awful disease. He really is a truly inspiring guy. I know you're going to be really interested and inspired by his story and I'm sure you're going to be able to take some great advice from this interview with Sam Perkins. This podcast is brought to you by Brits Superfood. Now, I've been a big advocate of wheatgrass for many years, but I only in the last year or so switched to having fresh wheatgrass that's then frozen as opposed to the powdered stuff. And I found that to improve my health even more. Now I've been a big advocate of wheatgrass because I know it's kept me fit and healthy, because when I've had spells where I've stopped it, I've started picking up the bugs and colds and things like that again, which I never seem to get when I'm taking wheatgrass. I know it improves my immune system, my health, but also gives me more energy and faster recovery. So loads of health benefits of taking wheatgrass. But Brits is field grown, organic, freshly frozen and they also do a load of amazing juices as well. So, so that you can combine the two like the beetroot ones, so you can have your nitrates before or after an event. You can find out more@britsuperfoods.co.uk but at the end of this podcast I'm going to give you a discount code or a referral code that will give you loads of benefits. So a discount, some free products, some free shipping, but they also have, which is worth just mentioning here, 110% 30 day money back guarantee. So if you're not feeling better having taken this for 30 days, they'll give you your money back and an extra 10%, which is absolutely bonkers. But that's how confident they are on the health benefits that you will see as a result of taking wheatgrass just for 30 days. So anyway, hang on to the end of this podcast and I'll give you a great discount code. This podcast is also brought to you by the Tribathlon app. The best place to find all of the running, swimming, cycling or combination events out there. The best place to find people to train with and the marrying of the two, helping you find out where your friends are competing so that you can enter the event. Because we all know that if you enter a triathlon that your friends are doing, it's so much more fun than doing one where you know nobody. So go to tribathlon.com, download the app and find your next event. So, Sam, welcome to the Tribeathlon podcast. Thank you so much for being a part of this. I'm really excited to chat to you. For those people out there that have not heard of you, do you want to tell us a little bit about your story? You know, how have you, how did you find the sport of triathlon? What were you doing at the time? Where did it take you and where are you now? So tell me a bit about your story.

Well, thank you for having me. First of all, Charlie, it's a pleasure to be on the pod. My journey with triathlon, I guess I've always found you get two sort of triathletes, you get people who've been into and obsessed with sport like forever and then you get people who weren't at all into being fit and exercising and Just heard about it and thought that sounds like a great challenge. I would definitely fit into the latter category, I would say through my 20s, my hobbies were traveling around the country, following Nottingham Forest and frequenting pubs, which led to not the most flattering figure of a man, if I'm being honest. When I was about 28, I was about 18 to 19 stone. I'm 6 foot 2, so it wasn't like I'm 5 foot 2 and 19 stone. I was. But I was a very big chap and I was, I was sitting in my, my local pub with my, with my stepdad on Christmas Eve when I was 27, I think 27, 28. And we were talking about the fact that I kind of needed a bit of a challenge or a bit of a. I wanted to get fit really. I wanted to change myself. And I thought, well, he started talking about triathlon, which I'd not really heard of, to be honest. It was kind of late 2000s, I suppose the sport was really just starting to take off. And he sort of described this sport where you did a swim, then a bike and then a run. And I thought, well that sounds ridiculous. Like why would you do all those three things one after the other? Surely just one of them is a challenge enough. So I, he told me about a local, a local tri club just down the, just down the road in the village where I grew up and we sort of, well, I sort of half drunkenly committed to go down and give it a go in the new year as a New Year's resolution. So I went down start of January feeling quite self conscious I think because the first, the first session was a swim session. So there I was, peer belly and man boobs. But thankfully I used to swim as a kid so my technique was a technique of my confidence in the water was there. So I jumped in and joined in and I thought, you know, all these people are really accepting. I met a lady called Pat Rogers who probably in her late 50s, 60s, and told me about the fact that she'd just done her Iron man that summer. Wow. And to a novice I kind of thought, what? This, this sounds ridiculous. I can't believe that you've just done that. She was really accepting and encouraging and it kind of welcomed me into the sport. And then three months later I competed in my first sprint triathlon. Eastleague. So it's a pool based triathlon and I got round in about 1 hour and 36 wearing my forest shirt just to wind up the event organiser who was a Leicester fan Yeah, and just a sense of achievement when I crossed the line was enormous and I kind of had my family there and it was, I think because it was out of character because I'd spent the last 10 years drinking in the pub and not smoking quite heavily as well, believe it or not. It's kind of. I thought I really like this kind of sense of achievement, this kind of working towards this goal and sticking with the determination for the three months up to the event to actually then go on and do it kind of switched something in me, I think. And from then on I was, yeah, I wouldn't say obsessed. I would say I was a really keen participant. I didn't kind of stop going to the football or stop seeing my friends in the pub, but I. I didn't do it all the time. And I did exercise regularly from that point on. And it led over the years. I kind of upped distance and eventually ended up 2014, doing my first Ironman in Bolton, which, yeah, was kind of a surreal moment, crossing that finish line and thinking about that kind of five, six year journey to get to that point. And then did Outlaw, full outlaw in 2016, an hour and a half quicker than I did Bolton.

Brilliant.

Yeah, really just a really amazing accepting sport where I was never competing to win, but I was always competing against myself and that was enough. And it was enough for the people around me as well. Because when you're in a transition zone, that's what 90% of the people are there to do. There's very few people who are there thinking, right, I'm going to get on the podium today. You're mainly just challenging yourself, whatever goal you've set. And I think that that really resonated with me, I suppose. And then you kind of asked about my story from then, from that point on. And the reason, I suppose people can't see me on the podcast, so the reason I might sound like I've got a bit of a cold, that I now breathe permanently on a non invasive ventilator. So I've got a mask in my nose that breathes 4B. And the reason for that is because at the age of 37, I was diagnosed with motor neuro disease, which is a relatively rare, completely incurable, degenerative disease that affects the. Your motor function. So steady decline in your ability to use your arms, legs, in my case, diaphragm was the first thing. So my breathing was the first thing that was affected. Quite often that's last. And it also affects speech, swallow. So essentially the most famous case of it, of course, is Stephen Hawking. I think you could argue that that's not necessarily a good thing for the disease, that he's the most famous case because he lived a very long time with it, and that isn't typical. So 50% of people who are diagnosed pass away within two years of their diagnosis. He lived for 40, 50 years with the disease. Yeah. So that was a challenge. But, you know, I would say that I've really tapped into the determination that you find when you're 15 miles into an Iron man run. You know, you decide that, you know you are absolutely going to finish, even though every kind of fiber in your being is telling you, I've had enough of this. You know, I'm really knackered. I just want to stop. Somebody let me lie down. And you go, no, I'm going to finish. And I bowed really, really quickly, actually, after my diagnosis, to get the most out of every single day, make a difference where I can. And so far, I've been able to do that. Covid's been a bit of a challenge because it's scuffed many, many plans, and I'm not blessed with the luxury of time. But, yeah, I would say that triathlon kind of changed my life in many ways. It made me feel an awful lot prouder of myself, made me an awful lot healthier through my late 20s and early 30s than I was through my late teens and 20s. And it's also given me the tools to cope with what life's thrown at me in the last couple of years. Really, really well, to the. To the point where I, you know, I go to bed and I look forward to the next day. I don't wallow. I just. I just tap into that determination that I found through this incredible sport that we all love.

Fantastic. I mean, it is an incredible story. And, you know, I suppose let's start with just prompts, so many questions. Let's start with what did you have planned for this? How long ago was your diagnosis? How did that come about? How did you find, you know, what were the first signs of it? You said it was about your diaphragm, but how did you really find out? And then what did you plan between then and where we are today?

Okay, so, journey to diagnosis. I'd given myself a year off in 2017 after Outlaw, because it had been quite a busy two years. So I was still kind of going out on my bike, keeping busy, but not training, really. And then 2018, I planned a bit more, so I think I'd signed up for the Outlaw Holcomb to do a half. And I was kind of going out doing stuff at the start of the year and I just, I didn't feel right. I couldn't, I couldn't really put my finger on it. But my kind of. My legs felt heavier on runs and being a big guy, my legs always felt heavy on runs but there was something a little bit different that they just couldn't seem to pick them up the same. And I started to when I was out on the bike. I noticed that usually when climbing a hill on a bike, I don't know if it's the same for everyone but my legs and my lungs would kind of reach the point of I can't push anymore at the same time. So I wouldn't be able to breathe any harder and I wouldn't be able to do any more with my legs. But it changed in that I felt there was more in my legs but there wasn't any more in my lungs. So I couldn't get the air in to allow my muscles to do the work. So I was kind of riding up a hill thinking I feel like I can push harder in my legs and I can do this quicker but I physically can't get my airing to do. So it was, it was such a strange feeling. But the kind of thing that you just think is a, is a quirk of the. You don't really put that down to anything serious at the time, I suppose. But it affected my training to the point where I went, you know what, I can't, I can't seem to gain the fitness to do Holcombe this year. I don't know what's up with me. I changed job as well. So I put it down to kind of stress and, and being too busy and lots of other reasons it went right, that's not going to happen this year. I'll just concentrate on getting a bit fit. I then had a crash on my bike in. It was September of that year, which is I suppose an amusing story that we might come back later. Actually crashed my bike into the back of a horse.

I think we've got to hear about this now.

Tell me about that now because it.

Sounds like it could have been messy.

It was pretty messy. I was descending a hill in the Peak District on an evening ride after work with a work friend and I was coming down this hill and on the hill there is a right hand corner. So I was coming downhill, doing a fair bit of speed, tipped into the corner and as I tipped into the corner saw A horse in front of me further round the corner. I couldn't physically tip anymore without thinking, you know, I'm going to lose grip and come off the bike. So I tried to knock a bit of speed off so I could tip more. But obviously in order to knock the speed off, you need to kind of straighten up a bit. And the road was a bit greasy as well. So I then kind of had two options. I went left and went straight on, but unfortunately that was an eight foot concrete wall. Or I tried to tip as hard as I could and see if I could get past the horse. Unfortunately didn't get past the horse. So hit it pretty hard, almost did it. Because it was the left hand side of my body that hit the horse. But the first thing that hit was my hand on the brake lever. So I ended up chopping the end of one finger off and breaking another finger in about five places and got thrown across the road for good measure. Always wear a helmet, everybody, because you never know. And my helmet was in bits after that because the first thing that hit the floor was my head. I'm very glad I had helm on.

How was the horse?

The first thing everyone asks, the horse was okay and it bolted off down the road. The rider was very shaken up, but she managed to stay on the horse. So no damage done to anybody other than me, other than a bit of shock, which was obviously was a concern of mine. You know, I hoped that I hadn't hurt anyone else, but yeah, it ended up with me in Derby Royal Hospital for three days. Hand surgery, hit it by hand and kind of a bit of time off driving and typing and recuperating. And so that after the horse incident that made the. I was kind of recovering from that, but then starting to get the effects of MND at the same time. So kind of made it even more confusing because. Is this all related to the fatigue of my hand or is it.

Could have been. I guess you might have been thinking about concussion as well.

Yeah, yeah, yeah, it was. So, you know, I was feeling very tired, very lethargic, and everybody was saying, well, you know, your body has to use a lot of energy to repair bones and overcome having surgery and stuff. So it's probably down to that. And I was like, okay. And I think. I think it was about October, November time. And I went to the doctors and I had this list of kind of weird stuff that was happening to me. Like, you know, feeling heavy in my feet and getting. I was feeling. Started to feel very short of breath when I laid down. Flat. So I'd go to bed and as I'd lay down, I kind of panned for 30 seconds to a minute before I got my breath. It was weird. And I was having really vivid dreams as well and I went to the doctor and she was pretty confused, didn't really know what all these things mounted up. To try to address one or two of them through a bit of medication, I think referred me on for a neurology consultation. But as that was like months away and as I got towards Christmas, I think it was just about late November, I pretty much stopped being able to sleep for any considerable length of time. I would go to bed and I would be awake 30, 40 minutes later. And that continued until in late February. I was feeling pretty rough, but I was being a typical man going, I'm alright, it's just a bit of a cold, yeah, I don't know why I can't sleep, but I'm okay. But I wasn't well enough to go to work or drive so by because I'd been. I drove my car over to my sister's and I couldn't really remember the journey because I've been dropping off at the wheel. So I kind of took myself out off driving. I said, I gave her my keys and said, I'm not doing that again until I sorted out. So it was my plan to get a bus that day. And Emma looked at me and she said, sorry, Emma's my wife. And she sort of looked at me and said, no, you go to hospital, we need to figure out what's wrong with you. You're not right. So I went down to Queen's Medical Centre in Nottingham and I was admitted pretty quickly. I had a heart rate of about 138 sitting still and my blood oxygen was about 74% which is pretty low, well, very low. Should be above 94 if you just sit normally for a fit triathlete, would probably be 98, 99 all the time. And yeah, so I was admitted and all those symptoms, majority of them had been happening because my diaphragm was weakening, shutting down. So lying down and being short of breath because my automatic muscle in the diaphragm that pushes the air and it out, didn't have the strength in a horizontal position to drop, to do that, being unable to sleep, the body's not getting enough oxygen because when I was lying down I wasn't breathing properly. And so if it's not getting enough oxygen, it wakes you up because it thinks that something's wrong, like the air in the room isn't right or whatever. Vivid dreams, shallow sleep, vivid dreams, all of those things, because the diaphragm. But it's so unusual for that to happen in somebody who's fit and healthy in their 30s. I mean, breathing as the initial problem in MND only really presents itself in 2% of cases. So, yeah, I was a really unusual case. And when I was admitted to hospital, they very quickly figured out that I'd developed pneumonia. Because the other thing with a weak diaphragm is that you don't have an ability to cough properly, so you can't clear the secretions in your lungs. But they didn't know why, and so they weren't ventilating me as they should have done. Well, as they should have done, as they would have done had they known the diagnosis. And I ended up in intensive care because I basically. I choked on my own secretions and I couldn't breathe. So one of the doctors said to me that wives save lives because obviously if that had happened at home when I was trying to sleep, I wouldn't be here anymore. And the next day received my MND diagnosis, which was, yeah, devastating, really, to receive a diagnosis when you consider yourself fit and healthy at the age of 37. And there is, you know, you kind of expect, okay, so we've discovered you've got this disease. These are the treatment options. This is what it means for you, and this is how it's going to affect your life. But with mnd, it's. We've discovered you've got mnd. We're very sorry. There's very little we can do. And it is, you know, 50% of the time, you will be dead within two years of today. You know, when you. When you're 37 and you've got all these plans for life, that's. It doesn't get much tougher than that, I don't think. But it really didn't take me long, and I think it's. I think it's partially because I've read up about the disease, and I do. Once I started to get properly ill, I knew that this could be something that was happening to me. It didn't take me long to go right. You know, I've been dealt a really bad hand here. But what, you know, what. What can I do? It's part of that triathlon kind of mantra that you controllables. So you might turn up for your Ironman race. The wind's blowing at 30 miles an hour. You can't do anything about that. All you can do is control how hard you pedal, how good your nutrition is, how much energy you expend. And so I've got mnd. I can't do anything about that, but I can control my attitude every day. I can control what I try to achieve with the time that I've got. And so it happened within probably 48 hours that I just switched into that mode and went, right, let's just get on with things. Helped massively by Emma, because I think she went into just do mode, just doing positive things. So she kind of helped me flick into that mentality. And since that, we have founded our own charity, which is called Stand against mnd or S A M Staff for short. And we have. That happened about 10 months ago and we've so far managed to raise just over 35,000 pounds.

Amazing, amazing.

Which is great. And we raise money for research towards treatments and cures for motor neuro disease. And we also provide support for palliative care for people with mnd, initially in the kind of Nottingham area, but as we get, depending on how big we get, we'd like to fund that more widely. But obviously we're a small charity at the moment. But I'm doing everything I can to kind of raise profile and tell my story so that people understand that this can happen to anybody. You know, it doesn't. It doesn't discriminate, doesn't matter whether you've looked after yourself or not. It's just there are some genetic markers, but in a lot of cases it's a random kind of roll of the dice and there are people younger than me who've got the disease. It presents itself in lots of different ways and we just wanted to do something about it. Yeah. So we've still managed to raise over 35,000 pounds, despite lots of the things we had planned for this year having to be cancelled because of COVID So we're proud of that. Sorry, carry on.

I was going to say. Sorry. So what did you have planned?

So this year we had. We're going to put an event called Samfest on, which was everything I enjoy in a field in a day. So we were gonna get some life bands, get some craft ales, get some barbecue food, lots of different sports down there. So we were gonna be supported by Nottingham Forest, who've been brilliant with me, and we were gonna get people to die. We were going to try and incorporate some sort of triathlon stall, but I don't quite know how we were going to do it. We talked about sort of endless Pulls and then exercise bikes and treadmills. Maybe we were going to do like some sort of comedy transition challenge. So getting complete amateurs in wetsuits and seeing how quick they could get into a tri suit from a wetsuit. I mean, I just thought video clips of some of my less fit friends doing that would be quite amusing. Yeah, just. And just to get everybody in the field and have a good time, embrace somebody. And I was going to do another triathlon. So that was one of my big challenges to do Outlaw Holcombe, which is the one I'd signed up to do in the year when my training kind of got derailed by mnd. I was going to do that by being towed around in a boat, pushed on a bike, and then pushed it up in an adapted wheelchair by a group of willing volunteers just to be part of that triathlon environment again. I think, you know that I was a strong swimmer and a strong cyclist and a poor runner. So I spent pretty much every single run rate running element I ever did being overtaken by people telling me to carry on, keep going, mate, it's all right. And I was kind of thinking, I know you think I'm struggling, but this is my normal run pace because I'd get to run transition about when I was. When I was at my fittest, I'd probably be top 25% of the field when I got to run. And if I finished in the top half, I was happy. So I got overtaken a lot while I was running.

A friend of mine is a really strong swimmer, like out of the. Out of the. Out of the swim in the top 10. And then he's a good cyclist and a slower runner, but he spends the entire rest of the triathlon having people overtake him. He doesn't overtake anybody else. And of course, when you're overtaking somebody on the swim, you don't really appreciate it, do you? I feel your pain there.

Yeah. It's just something that you have to accept, I think, because you go, you know, I'm still in front of a lot of people and I was quicker than you on the bike. Don't get all smug just because you're running past me. But that, yeah, that camaraderie that you get or a triathlon, I don't think you find in many other sports, to be honest, that encouragement from all your competitors. I wanted to be part of that experience again. I think I'm still hoping it will happen next year. I don't know what my health will be like. I don't know whether it will allow it, but we're still planning on going ahead with it, obviously to raise money for the charity as well. I do feel a little bit sorry for the people who are going to cycle because I'm, you know, MND does deprive you of muscle mass, so I'm a lot skinnier in the limbs than I was. But I've devoted myself to fine food and ale in the. In the time when I've still been able to eat because I don't know how much longer I'm gonna be able to eat and drink for. I make sure that I eat food that I enjoyed. I. I sample lots of different craft ale on a regular basis so I keep my weight up. So they still have to cycle with about a 12 stone man on the front of the bike and anybody who's been on a tandem with an unwilling compatriot knows that that's hard work. So, yeah, we'll see how that goes.

I'm sure you'll be giving them a few words of encouragement to keep them motivated.

Yeah. Oh, yeah, absolutely. Absolutely. What are you getting overtaken for?

Yeah, he would have never overtaken me. It's amazing. And so is your plan to go back and try and do that at Holcomb next year.

Yeah, that's definitely. And one of the things that we've actually. Another triathlon related thing that we've been able to do, we've actually been able to do last weekend is we're encouraging people to do the E Sleep triathlon if they've never done a try before. So E Sleep tri was my first try and it inspired me to kind of change my life and get involved in this sport that we all love. And last weekend there were 13 first timers did Eastleap try for the charity and they raised just over five and a half thousand pounds. Brilliant. Between them all. And so we'd like to make that a regular thing. So that event happens early season and late season every year. So March and September. To anybody who wants to give triathlon a go for the first time, if you want to raise a bit of money for a willing cause, then get in touch with the charity. The email address is standagainstmndmail.com just drop us a line or tag on. All social media is just stand against MND as well. So we're on Facebook, Twitter, Instagram and LinkedIn. Get in touch with us through any medium and we'll more than happily support you. We were planning on doing a pasta party actually this year in advance. Of the event. But Covid restrictions came back in, so we ended up giving out goodie bags with race T shirts and a packet of pasta and sauce. So, you know, we will support you to the absolute most of our ability in your quest to complete your first triathlon.

I think you hit on an amazing point, though. And it is actually part of the reason why the whole tribathlon app has. Was kind of thought up in that, you know, endurance sport is actually a very individual sport, isn't it? It's not like it's a team sport. It's not like playing football. And yet the camaraderie and the team approach, you know, because we're all competing against ourselves, really, as opposed to, I mean, as you say, other than the very kind of select, few are competing to try and get on the podium, Most of us are competing against ourselves. And so the camaraderie and support and the welcome that you get from this, I mean, I'm only four years into my triathlon journey and I've met some incredible people that have been incredibly welcoming, you know, guys that, you know, I'm coming in to try and do my first triathlon. I'm swimming with somebody that's been. Been to Kona 11 times, and yet just like, yeah, yeah, come on, yeah, come and join us. And it's just. It is amazing, isn't it? And I think that's one of the things that really surprised me because I think it's quite a scary world to get into. I'm, you know, fair play to you, going up, going in and signing up to a tri club straight away. I'm not sure I'd have been brave enough to do that.

I think knowing you've got the ability to swim okay. And also there was an ignorance element. I didn't know how unfit I was. I had no idea. And then we went to my first running session and thought, okay, yeah, I've got a lot of work to do. So there were. It's. It's an adults and kids club. And what would happen. It was formed. There's a club for the kids, mainly. And what would happen was that the adults would drop their kids off for a swim session and they'd all hang around. And eventually they kind of went, should we just go for a. Should we go for a run while the kids are swimming? So that's how the adult side started. And as a result, there used to be a few ladies towards the back of the run field who would mainly kind of jog around and have a chat Rather than kind of being at the front pushing themselves to do that interval as fast as they could. And when I first went, I couldn't keep up with the ladies who had a chat. After like, after a couple of weeks I was, I was keeping up with them and occasionally chatting with them too. After a bit longer I was kind of pushing on ahead. And that is actually quite nice to give me that marker of improvement because I think if the ladies who chat hadn't been there, then everybody else would have been so far ahead of me that I'd have got a bit demoralized, I think.

Well, I started my triathlon journey on my own training, doing everything on my own. It was only when I got brave enough to swim with some other people that changed. But when I started playing squash, which was about over 10 years ago, I had exactly the same experience. I started in the bottom league and I'm losing to these old ladies with a purple rinse charging around the court trying to keep up. And they just stood on the tee just sending me around like making me look like a complete idiot. But equally, you know, it means that you do feel like you're making some progress. So that's, so that's amazing. Of all the triathlons you did, what was your favorite? What was your favorite memory from all the different ones that you did?

Wow. I mean, I guess you got the obvious moments of like crossing the Ironman finish line for the first time, but that's kind of too obvious. I think.

You had a bit of a challenge when you did your Ironman, your first Ironman. Didn't you nearly have to withdraw through injury?

Yeah. So if you do, if you are listening to this and you do plan on doing Ironman Bolton, you will be told when you get into the lake for the second lap, do not jump from the pontoon, lower yourself in and then start swimming. And you will want to ignore that advice. I am here as a voice of caution for you not to ignore that advice. Because when I jumped in for the start of the second lap, I landed on a fairly sharp rock on my, my left foot and put probably about an inch and a half gouge in the bottom of my foot. So I started, I kind of felt the rock and I thought alright. And then I swam for the second lap and my left foot was kind of stinging a bit and then I got out, I got out of the swim and ran to the transition center, looked at the bottom of my foot and yeah, I put about relatively deep kind of gouge in it. So I called I, you know, I thought, well, I'll carry on, I'll see how it feels. Called St. John's Ambulance over who packed it with a load of gauze, got on my bike and it felt all right, and then got to the. Got to the transition tent at the end of the bike and thought, you know, this is going to be the real challenge running on it. But was kind of quite. Got it dressed again by St. John's quite fairly lucky in that it was only mildly painful. It did turn the side of my shoe red, though, on the run. But I think, to be honest, I think by that stage, everything hurt so much. It didn't really. It was like, what was the cut at the bottom of my foot while I'm running? I mean, like, every muscle in my body kind of aches and I've got 20 more miles left to shuffle along. So.

Yeah, and I think also, if you're anything like me, the adrenaline and all the extra caffeine that you have as well is probably kind of getting you through that level of pain as well, isn't it?

Absolutely, yeah, absolutely. The caffeine definitely helps, as do the pretzels when you get to the run. Bit of salt on the run. Just the most. The most glorious thing known to man. Like, after all that, all those gels of those energy bars and bananas and energy drinks, somebody gives you a crisp. It's like I remember having a. Having a conversation with a guy who had a bike crash and was just doing a bit of walking on his run leg and he was telling me how all he could think about was having a sausage sandwich. When he finished, and the two of us spent about a minute walking down this road in Bolton just like, eulogizing about sausage sandwiches and how great they would taste. And, you know, it's. It's moments like that that, you know, maybe my favourites, mine was pizza.

I was visualizing this pepperoni pizza that was going to be the perf. I was in Italy, so I'm in Italy. Like, the pizza is going to be amazing. And then through a bit of a confusion around translation, they ended up bringing me a pizza covered in peppers, not pepperoni. I got really upset about that. I sent it back, then they brought out another. I can't remember what was wrong with the second one, but I was, you know, I've been visualizing this pizza all day and I was about to lose my rag because my pizza wasn't living up to my expectations.

I can imagine.

So do you think that is your magic moment, chatting, or is it or which particular event did you think you want?

I think it's a bit of a random one, but I did Iron man staffs in the run up to, in the run up to outlaw in 2016 and I think, I think it was probably the, probably almost the fittest I'd ever been, I think. And I think just that sense of being properly in control and everything kind of going to plan, that was probably my favorite race from an enjoyment point of view because I knew I was doing everything as well as I could do. But yeah, I mean, that's another. I've worked really hard on my running one year and I did a sprint trying at Woodhall Spa and the run route is one big 5k lap and there was a guy who's probably about 400 meters in front of me and I just thought, I'm gonna catch you, right? I've been working really hard on my running. I'm going to catch you. And as I've said, I didn't catch many people on a run and I think I only got overtaken once and I caught him about 100 meters from the end and he obviously wasn't a lot slower than me. So it was kind of consistent determination to catch him. That might, that's another highlight, I think.

Brilliant, Brilliant. Sam, you've obviously got an incredible mindset now, whether triathlon helped you with that or whether you had the mindset and that's why you kind of embraced and did, did your triathlons and, you know, had the successes of doing the Ironmans and things like that. Where do you think that comes from? And in particular, are there any books that you've, you think you've found that have helped you along this journey?

I read a book called Going Long and it's a. Not going to remember the author, but it's a collection of stories from people from their first, from their first long distance triathlon. Some of them might have only done one, some of them might have only done, might have gone on and competed in Kona multiple times and won things. But it was reading about the adversity that everyone faces at some point, I think in the. Whether it's in your training, you know, whether it's in the race itself to do with nutrition, mechanical failures, muscle failure, whatever it might be. Everyone in that book dealt with, faced adversity and found a way to deal with it. And it kind of, it kind of made me, you know, think things like cutting my foot on that swim. It would be very easy to think, oh, why me? Why, why did this happen to me today. Aren't I unlucky? But you know, everyone faces challenges in pretty much every race they do. You only have to stand watching because I actually did this the year after Ironman. I stood at Ironman staffs when my friend was doing it and stood at the bike exit and you watched. If you've ever watched triathletes get on their bike and self on their bike route, we are the faffiest group of people in the world. Like people faffing with their watches, getting their Garmin going. People like not assorted their shoes out. Not assorted. Like the little box with their gels on it. And you think, you know you've spent 500 quid on a helmet, that's going to save you 30 seconds and there you are doing your shoes up at the line. I think if you just learned to jump on with your shoes on. Not that I ever did. I never spent 500 quid on a helmet. Yeah, we are. And everyone will remember those moments as things that went wrong at their race. So I lost some time doing this or you know, my calf cramped up on the bike or whatever and I thought, well, everyone faces it doesn't make me special and everyone else gets over it. So I just kind of get on with it. And I do think you said whether I had it before or whether triathlon developed, it definitely came from triathlon, that endurance event and that being focused on the end, on the goal, on finishing that made me realize that if you put your mind to something you can pretty much, you can do whatever you want really, as long as you, as long as you've got some realism. I'm not going to tell people they can fly or anything. If you've got the determination, you'll get there.

And how's that helped you? How's that equipped you since finding out about mnd?

Massively. Really. I think there's a. To go back to state, Stephen Hawking is a very famous quote of his that he said it's important, it's essential to focus on what you can do and not what you can't. I think it would be very easy to think about the fact that I can't walk anymore, I can't use my arms anymore, you know, I can't breathe on my own anymore. It would be easy to focus on those things and get miserable about them. But you know, some people discover they've got MND by their voice going and I can still sit here and talk to you and hopefully, you know, move some people towards triathlon hopefully move some people towards our charity and raise some more money. I could still vocalise and make a difference in the world. I focus on that, and I think that ability to focus on the thing that gives me the most enjoyment out of life, rather than focusing on the things that I can't do, which would make me miserable, has definitely transitioned, pardon the pun, over from triathlon.

And I think that there's probably never a more important time in society for that advice to ring true, is there? During COVID 19, I said a number of times, we've just got to focus on what we can do, not what we can't do. Yes, okay. There's lots of things that we love that we can't do, but we can spend lots of time with our family. We can be, you know, going for our walk, going for our run, going for our bike ride. We can swim in the river. We might not be able to swim in the pool. You know, there's so many things that we can do. And even if it's sitting around and playing board games as a family that we wouldn't perhaps normally get the time to do, then we've got to be really grateful for those things that we can do, as opposed to, you know, worrying about what we can't do, which is, as you pointed out, out of our control. So I think that's amazing advice.

Absolutely. I think the one. The challenge that Covid presents that maybe is a bit different is the range of things that we can do is bit limited, but we are. I think you've just listed off a number of things there that we probably wouldn't normally do if we had all of our options. Like, the time of sitting around and playing a board game with your kids is, you know, people don't really do that anymore. They sit on tablets and interact. And I think having that opportunity, you know, I would say probably not so much latterly, but early on, like through video chats, etc. I've probably been more social with, like, old friends from university and wider groups of friends than I have been for years, because, you know, you see them every six months, occasionally, like something on Facebook. That's a lot of social interaction hitting a button. But actually sitting around having a chat with them has been great fun. Yeah, I agree.

I think that, you know, I've got the six of us that were school friends and we've chatted way more since the start of lockdown. We started our own little film club. So we were watching a film and then talking about that and meeting most Most Sundays on a. On zoom during lockdown, it's actually dried up. We were supposed to be resurrecting it this weekend. Although God help me if anybody tries to get me on a Zoom quiz again. I think that was. It was good fun while it lasted, but I did get quiz fatigue by the end.

Yeah, yeah.

And then staying on the theme of books, are there any books that you've read since being diagnosed with MND that you found to be really helpful or anything, Any other sources of any films, any podcasts or anything really?

I would say not books, unfortunately, because using my hands mean that reading books has been difficult. I've just. I'm actually just getting set up tablet wise to read, to read again. I don't. I think films wise, I've watched a lot because I've kind of invested money that would probably have been spent on a new bike into a new telly and kind of a bit of a home cinema set up. But nothing, no, nothing in particular that's kind of inspired me, I don't think. I mean, I've watched stuff in the past that I guess kind of tap into like. I don't know if you've ever seen Touching the Void. It's a true story. It's documentary about a pair of mountaineers in the. I think they're in the Andes and they have an accident and one of them has to cut the rope on the other one, you know? Yes, I know the story that he's thinking that he's died and this guy falls, breaks his leg in multiple places and actually managed to. To drag himself down a. Down a glacier and meet up with the other one kind of four or five days later, which it is just, I guess that mindset again, that mindset of, you know, I could, I could sit here, accept the fact and just wait to die, or I could do everything in the interim to see if I see if I can not die. Yeah, I suppose it's. Maybe it isn't built in terms of. Maybe it's a bit like fight or flight in terms of, you know, having that. Just going to switch on and do whatever I can do. Because. Because why not? You know, I can either spend the time I've got left wallowing, be miserable, or I can spend it around my family doing things I enjoy, finding ways to overcome. One of the best things about mnd, I don't think many people ever say that one of the best things about MND is all the new tech you get to play with. So I've got. There's a. There's a charity called Special Effects and they've set me up with the ability to play on a PlayStation again. So I've got, like, little buttons and heads, I've got a joystick that I use with my chin so I could play on driving games on my day. Absolutely brilliant. You know, there are loads of little things around the house. One of my carers calls me Gadget man because everything's voice activated.

Well, in this society, actually, there's more opportunity for that than ever before, isn't there?

I mean, absolutely amazing. I think that's the other reason for the charity, is that there is. Technology moves on so fast and so the more investment we can get into treatments, things that help, things that might cure mnd, the faster we'll get there. And it's sad to say, but it's all about buddy. The MNDA is the primary charity for MND in the UK and their annual fundraising is about 18 billion pounds. And when you put that in the context of other healthcare charities, it's just. It's pitiable. And, you know, there are 5,000 people in this country at this time with this disease and it will affect 1 in 300 of us over the course of our lives. So you and I both go to the city ground where we can, and if there are 30,000 people in there, that means a hundred of them will get this disease at some point. So when you put it like that, and you think we're only funding this to the tune of 18 million quid a year, we need to do a lot more. And it might not just be. It may come too late for me, but that doesn't really matter. I'm just. All I'm focusing on is I've got this time, so I'm going to do what I can to make a difference to that total, however small it is.

Really, I think it's amazing. And you know, MND8 is a. Or MNDA, the charity that's very close to my heart. I sadly lost a friend to this disease a few years ago. My longest standing employee lost her mum to it last year. So last year it was our chosen charity and we. So I did my first marathon raising money for it, my first Ironman. We did a charity ball, but. So I know MNDA fairly well.

Thank you, by the way.

Oh, well, no need to thank me. It's an incredible cause and I couldn't agree with you more that it needs more awareness and more money raised.

So why.

Create your own charity as opposed to raising more money for mnda.

Because it's something personal to me. I suppose it's a little bit like the version of when you do your own fundraising, you have your own page, so you know how much you've raised, in a way. But equally, I think the MNDA have been brilliant with me, but I think the most important thing they do to me, the most important thing is the research that they fund. So all of the funds that stand against MND raises, we filter towards MNDA research. We don't claim to fund our own research because we haven't got the knowledge to know which is the most effective. That's what their board of specialists do. And the other reason was because I've received an awful lot of support from the Nottinghamshire Hospice in terms of. I have a counseling session every week. That doesn't cost me anything to kind of maintain my mindset and overcome the challenges that I do face, because it's not. It's not sunny and rosy all the time. And I also receive. I get free massage and physio through the hospice, which makes an enormous difference to my quality of life. And I wanted to give something back and I understand how important that palliative care is for people with mnd. So a higher percentage of what we raise goes towards MND research. But we also wanted to give something back to that palliative care community because they've been an enormous help to me since I've been diagnosed.

Amazing. And that sounds to me like there's a bit of the triathlete coming out in you there in that. You know, with triathlon, you're always trying to research the, how can I, you know, like spending £500 on a helmet, if that's going to take two minutes off my time and, you know, is this suit going to take another minute off my time? You know, all those marginal gains. And it's all about the research, isn't it? And perhaps there's a little bit of that coming out in your.

I think it's, you know, I received loads of positive support after I was diagnosed from my Casper social support group and spoke to Emma and we kind of went, you know, how are we going to put this to most use? And we could have asked people to donate to the mnda, but instead we went, you know what, let's harness it and try and create our own community rather than a one off donation. We do loads of different things. We've got a children's book that's about me and my niece Lily, and all the profits from that go to Stand against mnd and it's an incredible read. It's called Lily and Sam. It's available on Amazon and it's being used by teachers to teach kids about inclusion. There's no mention of MND in the book. It's just that I use a wheelchair and that's different. It was actually read by Chris Cohen as a bedtime story and shared on Nottingham Forest social media.

Fantastic.

So that was really cool to do. And there's a follow up in the pipeline and all sorts, you know, and I've talked about SoundFest and the first time triathletes. We've got a page on Instagram where people create their own artwork and we sell it for them and the proceeds go to the charity and all the artworks about strength and determination. It's just that's called Sketch against mfd. And I think putting the charity together, I guess you're right in the way that we thought about how we could turn this swell of goodwill into the biggest impact we can. And I think the charity was the best way to do that.

Fantastic. Sounds like it. You've got so many great ideas and yeah, I'm going to be looking into a few of those and my wife's an artist, so I'll get her. I'll be certainly introducing her to the Sketch against MND because that sounds right up her street. That's amazing. So, a couple of last questions. What are you most looking forward to in the future? What excites you the most?

Twofold Covid being over doing Outlaw Holcombe and going back to the city ground.

Fantastic.

Yeah, I think just those little returns to normality that we've all missed, I think, but as individual kind of one off things. And I think going back to the city ground when it's full, I think it will just feel weird because it'll just. It'll be like watching a practice match. It's been weird watching football anyway. Yeah.

Particularly when Forest are losing. And we know that that's fairly likely at the moment.

In a way that's felt. That's been a bit reassuring because it's felt like a return to normality, hasn't it? I mean, I think last year everybody was a bit confused by the fact that we were doing so well and this didn't feel quite right. And you know, now that we've settled back into, you know, we've had one big cataclysmic failure at the end of last season and now we're, we're trudging through in mediocrity. Slightly lower than mediocrity. Kind of feels comfortable.

I think it was an almighty fall from grace, wasn't it? I think. I think perhaps, like you, maybe the Forest squad were a bit intrigued, enjoying a few too many pints of Brian Clough ale over Lockdown because they. It was quite phenomenal how badly they came out after. After lockdown and how they threw away a almost guaranteed playoff place.

But although I do know quite a lot of Forest fans who make quite a lot of money gambling on that particular.

Well, well, they're in. Maybe that's where the problem lies.

That is true. And you know, you know, facts of other clubs before the game, you went, no, we'll probably mess it up. But they all went, not from there. Nobody. Nobody can be that bad. Yeah. Yes, we can.

Well, and I'm. I'm guessing you're still getting to watch the games on, but online at the moment as opposed to in the city ground.

Yeah, so I have. My dad comes around because we go to the games together and we still watch them together. And then we have an online virtual pub meeting between the lads that I've been going with for years. So we opened an online pub called the Rat and Tuppence. We all sit and discuss performances and everything else, you know. And like we said earlier, lockdown's presented us with those opportunities, hasn't it? Yeah, yeah, those sorts of things.

Fantastic. And my final question is if you could give people. I've been asking this question specifically about somebody's expertise, but I'm going to leave it more generic for you. If you could give people one piece of advice, with everything that you've learned, if you could just give people one piece of advice, what would that advice be?

One piece of advice. It's definitely not unique to me, but I would say I've been better at employing it over the last two or three years than I have ever in my life before. And it would be, treat yourself the way that you would treat other people. So the number of times that you hear people criticize themselves for things they've done or things they got wrong in a way that they wouldn't do with other. With their friends. Would you say that to your friend, oh, you're an idiot. Why on earth did you do that? What a stupid thing to do. You wouldn't say it to your friend. You would say, well, you know, you didn't see the outcome. It was an honest mistake. Just be a bit nicer to yourself. And I think I've definitely been guilty of that throughout my life, and it never made me any happier. So just be a bit. Be nicer to yourself and try and get the most out of every day that you can.

I think that's incredible advice and, yeah, I couldn't agree with you more. Incredible advice. Sam, it's been an absolute pleasure to chat to you. Can you just tell every. Remind everybody again how they can find out more about your charity, Sam.

Yep. So the charity is called Stand against mnd. You can find us on all social media channels. And when I say all, I mean Facebook, Twitter, Instagram and LinkedIn. And the tag is the same on all of them. We are Stand against mnd. You can contact us through Gmail and the email address is stand againstdemndmail.com and if you want to raise money or donate, we are registered on Virgin Money Giving, so you can just search for us on there as well. Yeah, get in touch. We're always happy to hear from people with new ideas. If you want to do some fundraising for us, we hope we respond quickly. And, yeah, we're always happy to have more supporters. So great. Thank you.

Well, it's been. You're an inspiration to listen to. So thank you so much for being on the Tri Bathloom podcast and I can't wait to see you cross the finish line in Holcomb. And if I can be there, I will be.

It would be lovely. It would be lovely to meet you in person, Charlie. Thank you very much for having me today. And thank you. I'm just. I'm just chatting away about what goes on inside my head. So it's not an intention to inspire people, but if it does, then great. So thank you.

Where you definitely are. So thank you very much. I'm sure you'll agree, just a great, inspiring, lovely guy. And, you know, but what I find really interesting is how triathlon has helped him during his life and particularly during his battle with motor neurone disease. It is. It's great that he's got an out, particularly when Nottingham Forest, my team as well, are not providing such positivity at the moment. If you want to find out more about Stand against mnd, then the best place to go to is their Facebook page. But you can also email them at stand against n mndmail.com we'll put all of this in the show notes as well. But I'm sure that you got some inspiring advice from that interview in the same way that I certainly have. And I think just what positivity, in light of the adversity that Sam shows is absolutely incredible. So yeah, a huge thank you to Sam for for taking the time out to chat to me about his story. So go check out Stand against MND on Facebook. And remember, this podcast is brought to you by Brits Superfoods. You can find out more@britsuperfoods.co.uk but if you use the link in the show notes or you use the Referral code of Tribeathlon, you'll get 10% off your orders. You'll get a free bag of juices worth £15 with every order. And those will happen forever. As long as you buy from BritSuperfood having started with that referral code, you'll get those forever. In addition to that, you'll also benefit from that 110% money back guarantee. So if you don't see the value in it, then then you can. They'll give you your money back and an extra 10%. So go check out the link in the show notes or go to BritSuperfoods.co.uk and use the referral code Tribeathlon and you'll get that 10% off free shipping and free juice on every order. And don't forget to download the Tribathlon app for more amazing podcasts, but also to help you train, compete and to build your tribe.