S1E8 Running marathons with MS with Alex Tsirigotis

Geoff Allix  00:00

Support for the Living Well with MS podcast is provided by Overcoming MS, a global charity registered in the United States, United Kingdom and Australia, whose mission is to educate, support and empower people with MS in evidence based lifestyle and medication choices that can improve their health outcomes. Please visit our website at www.overcomingms.org to learn more about our work and hear directly from people around the world, about the positive impact Overcoming MS has made on their lives. Now on to today’s episode. Most people regardless of whether or not they have MS may think running a marathon is, simply put, crazy, and OMS makes no claim to making everyone a marathon runner. Many people with MS will have symptoms that preclude them from running long distances, or indeed running at all. But today, our special guest is someone who not only runs but has pushed his body to its limits by regularly running marathons, and the fact that he has MS is just a footnote in his story. Welcome to the show; Alex Tsirigotis. So thanks for being on the program Alex, before we find out a little bit more about your penchant for running insane distances, perhaps you can tell us a little bit about yourself?

 

Alex Tsirigotis  01:18

No, thanks for inviting me on Geoff. So I’m Alex Tsirigotis. I was diagnosed with Relapsing Remitting MS back in 2013 and at the time I can recall getting some symptoms at the early stage of that year towards the end of 2012. For me, I’d done a lot of sports, I was quite an active individual, I’d play football three times a week or so and in one of those games I was playing, I had a knee injury, which saw me kind of have surgery on the knee and put me out of action for six to nine months, and it was only in coming back from that injury, I started noticing symptoms, what I would mainly manifest would be in eyesight and vision. For example, I would be playing squash or I’d be running on a football pitch and my eyesight would just become very blurred and patchy. Squash, I guess is the best example, I would play each week with a friend and after about half an hour of playing everything; the ball, the wall, the dots would just kind of merge into one and I would struggle to hit the ball back and to see where the ball was to the racket. And then it would start happening in 20 minutes, and then 10 minutes and so I saw that there was definitely an issue here. I was having physio at the time getting back, still from the knee injury and my physio said that maybe this is something cardio related because it comes on when you’re you’re doing exercise or you’re exerting yourself. So I went through, referred into a cardiologist, they did a lot of sort of tests and so forth and they basically concluded that your heart and so forth is fine, but we can see in these tests that you’re struggling with your vision. So let’s put you into an appointment with a neurologist and it was the neurologist then who put me into an MRI scan and it was that MRI scan, which then resulted in the diagnosis of MS.

 

Geoff Allix  01:22

So in many ways, actually, you’re quite fortunate that another medical professional, put you into the MRI process, because my diagnosis took a long time. It was actually quite quick.

 

Alex Tsigigotis  03:48

Mega fortunate on that, the speed of I remember going from Cardiology to Neurology and then to diagnosis was pretty quick and the diagnosis or the original diagnosis happened in June 20, the latest stage of June and then we were on medication by the end of the year; on Copaxone.

 

Geoff Allix  04:14

And was that initial diagnosis, was that quite a life changing moment, going from someone who’s very active?

 

Alex Tsigigotis  04:24

To say the least. OK, so bear in mind I was sitting in an MRI machine, and at that time, I didn’t even know what kind of MS was and it hadn’t come nto my understanding and my thought going through at the time was this could be something far more sinister. It could be cancer or so and when I got to the, originally, it was a Thursday evening, I remember going to the neurologist and he said; look, ‘I got some good news, there’s nothing terminal here, there is though, evidence of demyelination, which is Multiple Sclerosis, but don’t worry about it too much, why don’t you come back with your wife next week, and we can kind of talk through some of the options available to you’. And so when I left the original consultation, for me, this was, this was fantastic news because I had in my head, oh my goodness, it’s gonna be cancer, it’s gonna be terrible. I called my wife and said; ‘Look, great news, it’s nothing, it’s not cancer, I’m fine, but he seems to think I’ve got this thing called MS’. At that stage, I realised, actually, this is far more serious than I thought, because my wife, I was on the phone, she was devastated. She had grown up knowing people with MS in a far worse kind of state and bed bound, than we’re talking and so when I got home that really brought it home, to me that this was something far more serious than even I thought at the, at the early stage.

 

Geoff Allix  06:01

And so, when did you find out about OMS in that journey? And how did you find out about OMS?

 

Alex Tsigigotis  06:09

So, I think for the first sort of 24 hours, 48 hours, we spent a lot of time looking online about things. Things I mean, the doctor had said, a certain neurologist said, ‘Look, don’t look online, or if you need to, look at the MS Society’. But I guess it’s just going to be natural curiosity, you find yourself Googling and we kind of found a lot of evidence out there or lifestyle evidence through Swank. We’d seen some of the stuff that OMS had put out, this is back in 2013. So that the website wasn’t quite what what we see today. But I guess by the end of the weekend, on Sunday, we had found OMS, we had seen what the lifestyle changes they were advocating and I remember my kind of view on it was, look, this is something which is actually a practical thing I can be doing to overcome what is quite traditionally a disabling disease.

 

Geoff Allix  07:15

And how long did it take? How long did it take before you started to see improvements in your condition?

 

Alex Tsigigotis  07:24

Yeah, it’s a good question. I think it’s difficult to say it was on this date in 2015 or so. For me it was mainly it was a mental, the mental issue was one of the larger ones. So from a physical aspects, Yes, I was getting eyesight issues when I was running, or if I was overheating in stress situations. I think the mental aspects, the what if, what is going to happen? What is my life going to look like in the future? I remember on the kind of follow up meeting with my wife and the neurologist, he had said; ‘Look, expect to have mobility issues within three years’ and that was a very kind of realistic or not realistic, a very vivid timeline in my head, thinking, okay, in three years time, my lifestyle is going to change radically and that was playing through my mind on almost every day, you’re thinking you wake up and then you go, oh I’ve got a pain in my leg, maybe this is MS, I don’t feel great today, this is MS. Everything was being attributed to MS and I think, where that lifted, that sort of cloud lifted, wasn’t until I was fortunate enough to go on one of the OMS retreats and in that time, I met other people who were going through exactly the same thing. Very open minded and willing to take on the OMS lifestyle and I think it’s very different the situation where, if you do something on your own and you’re doing it and you’re you’re reading the book and you read the material, but then actually seeing others who are doing the same thing gives you a bit more validation that there’s actually something here, there’s a kind of a network and a community and I remember coming back from that retreat, feeling in a lot better state than when I went into it. So the answer to your question, When did I feel better? I think after that retreat, the mental aspect lifted, and being, having that mental aspect being pushed to one side, it gave me a lot more freedom to concentrate on just living, which has been great so far.

 

Geoff Allix  09:35

So have you got any tips on implementing the OMS program?

 

Alex Tsigigotis  09:40

I think, look, so I was fortunate because I was diagnosed or initially diagnosed on the first day, I found OMS soon after, and then I kind of threw myself into it. But I think for other people, it may be that might not be the right approach. It may be you know, take it as a, take care of this, change your diet, do some more exercise, do meditation, I think you need to do whatever works for yourself and don’t be too hard on yourself. If you don’t count your saturated fats on a daily basis and beat yourself up over having too high of saturated fat on one meal, or if you’ve forgotten to meditate one day, don’t kind of beat yourself up that you’ve done that. Just take it, take it in your stride, take it as it comes and do what feels right for you and I think naturally, through educating yourself, through understanding why you’re doing those things, you will reach your own kind of conclusion on what works for you. I can remember particularly, for example, on the diet, when I first was diagnosed, I was afraid of everything to put into my mouth, and so to the extent where we were just having steamed vegetables and grilled fresh fish for a couple of weeks or so, constantly, every single day and it just got very tedious. If I look at my diet today, it’s a lot more varied. We’ve recently discovered the magic of making cashew cream from cashew nuts and so forth and that opens up a whole kind of other availability in terms of recipes and so, so I think it’s, going back it’s take it, you know, do what works for you understand why you’re doing what you’re doing, and let things happen naturally.

 

Geoff Allix  11:29

Yeah, I mean, I think the diet you do it, you can exclude bad stuff. But you’ve got to remember to put in good stuff havent you? You can be unhealthy vegan quite easily.

 

Alex Tsigigotis  11:42

100%. I think it’s not about, I mean, it’s something, we’ve got a couple of children, a five year old and a three year old, and we’ve kind of raised them up in the same diet and so when people say, what can’t you eat, it’s not about what can’t you eat, It’s about what can you eat? And what are the possibilities? What can you make? What are the colorful things that you can create? I think that’s what becomes more exciting. We grow our own vegetables as well at home so were kind of exploring in terms of how to, what’s the best thing to grow, what’s the weather and having that kind of seeing food being grown and then cooking it and eating it, I think is very rewarding.

 

Geoff Allix  12:20

And so onto marathon running. So you’ve done a lot of marathons. How did that start? And how does it feel to run a marathon? How did you get started running marathons? And why do you run marathons?

 

Alex Tsigigotis  12:37

Good question. I guess I’ve done four marathons to date. The first marathon was in 2015, it was Paris and bear in mind, this was pre retreat. This was in the mindset of okay, I’ve got three years left, I’m coming up to you know, halfway through the three years or so, I don’t know how long I’m going to be mobile for. I’ve always wanted to do a marathon, and this was an opportunity to do it. Paris is a, for those who are wanting to enter marathons, Paris is a very easy one to or an easier one to get a ballot entry for them versus London or so. So I entered Paris, just with the mentality of; I want to prove that I’ve done a marathon in my lifetime, and the tick box. Next year, so we’re talking 2016, a friend was going to run in Venice marathon and they asked me to run with him and we were running for the charity Trekstock, which is a young adult cancer charity. And so we we did that in Venice and it was great, because we went there for a long weekend we took in the sights and did the marathon. And then the following year, so 2017 I’d gone for my, an MRI checkup and the neurologist said, ‘I’m looking at the your, your kind of results, and I can see the zero activity in terms of new lesions or active lesions’ and I remember thinking, this is four years now, what I’m doing in terms of how I’m living my life, and with OMS, it’s working. I’ve raised money for a cancer charity the year before, I want to do something now for OMS and to give back into what they’ve done for me to put back into the charity. It was a tough one because, to raise money for OMS for example, you have to put yourself out there and say, I’m doing this. Why are you doing it and have to disclose to everybody that you’ve got MS. And I thought it’s been four years, It’s worked, my doctor said three years I’d have mobility issues, there was no indication of that to date. So at the time I asked a friend if they can, if she can take some pictures of me for my charity website, she then created a charity video for OMS, which you can see, it’s up there, It’s called Atoms. It’s, there’s a website called Iamatoms.com, where you can see the charity video we put together and then I did the Athens, the Athens marathon on the back of the back of that.

 

Geoff Allix  15:22

And so you just running like a completely normal other runner, when you finish, you just get a silver towel around you and that’s it?

 

Alex Tsigigotis  15:34

No, sure I did, I did the Berlin marathon and not only the silver towel, you also get a pint of beer at the end, which was quite good. So when I run, this is where my symptoms still manifest themselves, and they even today, if I go out running, I will get the same symptoms I had when I first started. So my eyesight would deteriorate, I would never be blind but I couldn’t focus on things. I couldn’t read something, a sign or something and that still happens when I run, when I finish, my balance is all over the place and I have to kind of almost collapse for want of a better word and just rest for a few minutes and come back up and I’m fine. But yeah, that’s that’s still there. But I can still do something, my mobility is still there, I can still run and I think I’m comfortable in putting myself through that.

 

Geoff Allix  16:32

So obviously, MS affects everyone in different ways and your primary symptom is your vision. But for other people who, are like personally, I have problem lifting my left leg. So I have run a marathon pre MS but I wouldn’t. It’s not in the near future for me and certainly now I’m thinking I’d like to do a 5k. So for people who’ve got symptoms, which would affect their ability to run, what would you say to them? I mean, is it something, would they sort of cut out endurance exercise? Or, you know, should they still be trying different things?

 

Alex Tsigigotis  17:20

Yeah, it’s a good question. I think that if you’re, you don’t have to run in terms of the MS. Everyone doesn’t have to be a marathon runner but I think what’s exercise is important and I think what’s important is finding something that works for you. Running for me was great, I also did like a local park run, which I think they’re, they’re global, 5k runs every morning and it gets you into a whole community, as well as other people and you don’t need to be fast to do a park run I think people finish, you get fast people there, don’t get me wrong, like 16 minutes for 5k, which is super, but you also get the whole range of individuals going out to one hour 30 or so, and it’s not about the time, it’s about being there with other people and enjoying the social aspects and the community approach. So I think if runnings not for you, maybe you like swimming, maybe you like walking, maybe you like yoga or so. Anything that you can do to sweat, is something which I would encourage and we also set up something for in the OMS community, It’s a Strava OMS Club. What Strava is like, think of it like a Facebook or a Twitter without all the negativity. It’s just literally you can log on, you can post your activity and if you’re in the OMS Strava Club, you’ll see other people, other OMSers doing activities, and it’s a way to kind of have encouragement for all the activities that people do, whether it’s walking, running, cycling, swimming, hiking, yoga, you can even put meditations I guess on this.

 

Geoff Allix  19:07

Okay, and you just come back to park run, you mentioned, because there is a park run for people with MS group and also there are people who do it wheelchair bound as well, so it’s not just runners, I think they call it Wheelers Group. So they are very inclusive. I’m sort of working up to that, my children do Park Run, so it’s a very inclusive group and most of the courses are accessible. There are some, I know there’s one local to me that runs along quite hilly terrain, but most of them are pretty good terrain, quite sort of paved areas to do it on.

 

Alex Tsigigotis  19:49

Yeah, yeah. No, it’s great and there’s normally like, in our local one, there’s like a coffee catch up afterwards and you just have kind of a chat and stuff, which is great.

 

Geoff Allix  20:01

And do you have any long term so you have a sort of an immediate effect? If you do something extreme, like running a marathon, then you said that it brings back your symptoms, what are the long term effects of sort of good or bad of doing that yet? Is there any negatives to doing a lot of exercise or extreme amount of exercise?

 

Alex Tsigigotis  20:21

I think it’s important to listen to your body and what feels right. For me, personally, I like running and I’ll continue to do that, as long as I enjoy it. I think from a mental health aspect, I’ve noticed that in running and maybe it’s the community as well behind it, but that makes me feel better and if I feel better I can, I think it’s got to be good for what I’m doing.

 

Geoff Allix  20:49

And so if people are thinking about starting OMS program, what’s the best advice for those people? Or what advice would you give to people thinking about starting OMS?

 

Alex Tsigigotis  21:01

I think you have to ask yourself, why you’re doing it? Why do you want to go on an OMS program? And what are the the options available to you? And on the OMS website you can see all the different pillars, and you can see the reasons behind it. And I think then you have to asked yourself, is this something that you want to take on? Do you want to go through the OMS approach, or not? Maybe it’s not for you. Maybe it’s, you know, you want to just carry on with another approach. But I would recommend visiting the website listening to what is on offer, and take what you feel from there.

 

Geoff Allix  21:44

I think it’s important for me the, the belief in it. I mean, I’ve read the whole book, and it was that, you know there were no doubts. So I was thinking, Okay, this is very evidence bases, huge amounts of resources, endless references at the back of the book and it was that knowledge that actually, because there are a lot of other approaches out there, especially when you’re saying about the internet. There’s a lot of people who are quite happy to take lots of money from you, but with limited amount of evidence. It was that trust, I think.

 

Alex Tsigigotis  22:23

I think you’re right on there and then what it’s nice to see now, because OMS has been going now you’ve got almost a track record. You’re seeing other people who have gone on the same path, and making that as their way of life and seeing results and you’re getting a lot of positive affirmations that what you’re doing is correct. There’s a great book, I remember reading when I was first diagnosed; Recovery Stories, that i dont know if you’ve read that Geoff? I think reading that and seeing what people are doing and taking on and seeing it for themselves, I think is a real vindication that this approach works and it could work for you too.

 

Geoff Allix  23:10

I should add that the main OMS book is available from the overcomingms.org website and it’s freely available to the UK, Ireland, Australia and New Zealand and there’s also a free ebook available to the United States. For anyone else that is available on Amazon, Barnes and Noble and other booksellers. Think about exercise, is there any advice you want to give to people?

 

Alex Tsigigotis  23:35

I think that just, you know, the hardest step is the first step, start exercising, do whatever you can, and then the next week, try and do something a bit more.

 

Geoff Allix  23:46

Okay, so just take it step by step. And then you tend to find that then the week after you can do a little bit more than that and…?

 

Alex Tsigigotis  23:54

I think that, when it comes to exercise, for example, the first thing to do is stop comparing yourself with what others can do and it’s all about your own journey, and what you can do. So I think that, I mean, if you look at running as an easy example, I guess you will see people who are much faster than you, you’ll see people are much slower than you. What’s important is how you’re doing and how you compare to what you were yesterday.

 

Geoff Allix  24:17

I think personally, not comparing myself to me, from 10 years ago, is a difficult thing because I did run a marathon, I did rock climb, I did go mountaineering and all these different things and I have a tendency to judge myself against the old myself.

 

Alex Tsigigotis  24:40

You are only as good as your, your benchmark should be your last activity.

 

Geoff Allix  24:44

That’s a good point, so just base it on that. So can I just ask why you’re doing all these marathons and what’s next in your journey?

 

Alex Tsigigotis  24:57

That’s a good question. If I guess for me, why I do the marathons, it’s a kind of a test to myself to show that I can still do this, but also to give some vindication to other people as well to show them that actually, if you go down this approach you can still do running, even marathons you can achieve things where your neurologist may have said, from day one, when you were diagnosed, this isn’t going to be possible, this can be possible.

 

Geoff Allix  25:32

And have you got any plans for the future?

 

Alex Tsigigotis  25:36

Immediate plans, I’ve got I’m doing the York marathon later on this year, so I’m currently training training for that.

 

Geoff Allix  25:46

So thanks very much, that’s very inspiring stuff and thank you for joining us on the podcast.

 

Alex Tsigigotis  25:51

Thanks for inviting me on.

 

Geoff Allix  25:56

With that, I’d like to thank you all for listening to this episode of Living Well with MS. Remember that there is a wealth of information at overcomingms.org including show notes, and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, connect with other OMSers in your local area through our OMS Circles program, and learn about the latest research going on in the MS world generally and related to OMS specifically. I encourage you to register on the site, and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode and please feel free to share it with others who might find it of value. Let us know what you think about the podcast by leaving a review and if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website; overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and Living Well with Multiple Sclerosis. I’m Geoff Allix And I’ll see you next time.