Coffee Break #34 with Leah Tsirigotis | S4E54 bonus

Living Well with Multiple Sclerosis

Welcome to Living Well with MS Coffee Break #34, where we are pleased to welcome Leah Tsirigotis as our guest!

Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people.

As always, your comments and suggestions are always welcome by emailing [e-mail]. Leah has a unique perspective on the OMS community as a partner to an OMSer. Given the importance of a strong support network, Leah provides fresh insight on whole family experience of being on the OMS journey. We hope you enjoy this episode’s conversation with Leah, coming to you straight from London.

Leah’s Bio:

Leah Tsirigotis explores her and her family’s life as the partner to OMSer Alex Tsirigotis. Discussing how her family approach living day to day with MS and incorporating aspects of OMS in their lives, alongside what she would reflect on for those new to the program or diagnosis, are ways in which she is invested in the OMS experience.

Enthusiastic about living a fulfilling, informed, and happy way of life, Leah discovered new passions following her husband's diagnosis with MS 9 years ago and is now a natural living and natural health advocate, natural skincare advisor, trainee naturopath, as well as a mum to two kids and full time COO of a management consultancy in London.

Questions:

• Leah, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. You’re a bit of a departure from our typical Coffee Break guest in that it’s your husband who is on the OMS program. We think it’s a vital perspective to understand what it’s like to be the partner of someone with MS, especially when they are making significant lifestyle changes that may affect their spouse and family. Can you tell us a little about your day-to-day life as a partner to someone on the OMS program?
• From a spouse’s point of view, how did you deal with your husband’s initial diagnosis? I imagine it was a big pill to swallow, so can you share what your initial reactions were and how you managed?
• At which point did the OMS Program enter the mix? How was that experience for you and your family in terms of the changes you’d all have to make to support your husband’s efforts at adoption?
• What are some of the challenges you and your family faced at first in adopting the OMS Program, namely from your points of view as the support system to someone with MS? How did you overcome them?
• When did you first start to see any kind of positive results your husband experienced in following the OMS Program, and what were these? How did this measured progress make you feel as his closest family member? Has it all been worth it?
• On a related but different note, you’ve recently contributed a chapter to the newly released Overcoming MS Handbook, the latest book from Professor George Jelinek, this time acting as a co-editor rather than author. Your chapter is about prevention. Can you tell us a little about the experience of working on this project?
• The subject of prevention can take up a whole episode, and will in the future, but for the moment, can you distill some key insights you’ve gleaned on preventing MS in family members?
• Leah, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience as the spouse of someone with MS and being part of a family that has embraced the OMS-recommended lifestyle specifically, can you share a nugget of wisdom that would help the closest family or supporters of someone with MS ease into and better adopt the OMS program?

Three Interesting Facts About Leah (in her own words):

• The beginning (diagnosis) was terrifying for me as a partner to someone with MS and with a young family on the way. This feeling lasted for several years. Time, knowledge, and perspective really helped and whilst there are daily challenges to being a partner of someone with MS, there has also been a lot of learned from the experience that serves positively in other aspects of life.
• My advice for a partner or someone with MS would be to inform yourself, to understand what is happening to the body, explore the options that are available to support it positively, and always try and go with what resonates with you (your gut) when making often at times large and life altering decisions.
• Take each step day by day, and be open to the sometimes-daunting prospect of un-learning and re-learning continually on your personal journey.

Leah’s Links:

• Check out Leah on Instagram
• Learn more about Atoms
• Leah like the OMS Strava Club

Coming up on our next episode:

Is the medicinal use of cannabis “high” on your list of topics to learn more about? Then tune into the next episode of Living Well with MS, premiering July 27, 2022, and meet Dr. Mikhail Kogan, a leader in the newly established field of Integrative Geriatrics and author of Medical Marijuana, an evidence-based guide to the health benefits of cannabis and CBD.

Don’t miss out:

Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 48 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing [e-mail].

S4E54b Transcript

Coffee Break #34 with Leah Tsirigotis

Geoff Allix (00:01):

Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix.

Today, you'll meet someone living with MS, from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people.

You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform, so you never miss an episode. So, get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break.

Welcome to Living Well with MS Coffee Break #35, where we're pleased to welcome Leah Tsirigotis as our guest. Leah, welcome to Living Well with MS Coffee Break.

Leah Tsirigotis (01:18):

Thank you.

Geoff Allix (01:21):

And did I get the pronunciation? I've met your husband, but did I get the pronunciation of your surname right?

Leah Tsirigotis (01:28):

You did. Yeah.

Geoff Allix (01:28):

We're so pleased to welcome you on our program. The purpose of the Coffee Break series to get to know some of the diverse members of our community from around the world. And today, you're in the hot seat. So this is a bit of a departure from a typical Coffee Break, in that your husband is on the OMS program, rather than yourself, but we do think it's a vital perspective to understand what it's like to be a partner of someone with MS, especially when they're making the lifestyle changes involved with following OMS and how that affects their spouse and their family. So could you tell us a bit about your day-to-day life as a partner of someone on the OMS program?

Leah Tsirigotis (02:10):

Gosh, okay. Yes, I can. So I guess, to be very frank, Alex was diagnosed nine years ago. And so to be a part of someone on the OMS program is quite natural to me. I can't really remember life before it and it just seems very normal, but it doesn't feel particularly out of the ordinary, but I would say day-to-day life is get up in the morning, get the kids ready for school. And Alex, my husband, [inaudible 00:02:50] for a morning run and then we go to work. He often ends his day with some yoga or meditation, and I wouldn't say the world we live in right now, but that's particularly unique to live your life that way and maybe it was 10 years ago when we first started.

But it's quite standard. I guess, to maybe answer more specifically OMS or being a partner of someone with MS, I guess it can be very varied and there's days when maybe more is required for myself, for him specifically. So he might be having a day where he's struggling a little bit with more fatigue or some brain fog. Specifically, some of his issues are centered around vision and balance. So he might be having a day where his head's just quite full of stuff and I need to step in a little bit more there, fill gaps around the house, like help sort the kids out or making meals. And having empathy, I think, is one of the things that comes in day-to-day, this isn't just him being unwell or something. It's something that he's struggling with day-to-day and trying to battle through. And for yourself, that can sometimes be, I have a very busy job, we've got two kids, so could be quite busy. Sometimes you yourself feel a bit tired. You want to chill, you want to do all of that. And sometimes you have to suck up a little bit more, but I'm quite used to that. It feels like we've been living this way forever. So it doesn't feel unusual.

In terms of OMS specifically and where that plays in, I've never known Alex with MS and not on the OMS program. So we were quite fortunate when he was first diagnosed, I think within 48 hours, we found the program. I don't think we really slept for about two days and did lots and lots of research and kept coming across things around diet, lifestyle, being really, really important. And then navigated somehow to the OMS program. It was just something that really resonated with Alex specifically, but I also resonated with it as well.

OMS has definitely shifted the direction in which our lives have gone, both with MS and without MS in terms of the path it's taken us down, like our values, how we look at life and how we look at taking care of ourselves has definitely shifted. We didn't have kids when Alex was diagnosed. So our kids have been brought up in that world as well, and know very little different to, I hate saying this, living a normal life. What we do is very normal to us, but as a family, it wasn't something I adopted right at the beginning, but myself and the kids, I wouldn't say we follow the OMS program, but we have a lot of synergies.

So we also have chosen not to have meat and dairy in our diets, but we do eat things like the whole egg. We will have things like coconut and things like that, where Alex might not, but generally, we eat together really well as a family. And we cook from scratch. We also eat prepared food sometimes. We eat out, we've both got jobs, we've got a lot of stuff going on with our kids. We've got an active social life, lots of friends and community of people and lots of self-care activities. Alex specifically does a lot of meditation and exercising. Running is something that he took up after MS diagnosis. Yoga, sleep, we watch films, listen to podcasts, read. And it's also spurred on interests that we have that we didn't have before.

So, I mean, for me specifically, I really started exploring maybe more natural ways of living and really starting to connect to self and the body and listening to the body and how we treat the body. So I've done studying around things like homeopathy and nutrition. I'm currently studying naturopathy. Our daily products that we use, I've become an advocate for natural skincare. And I work with people in that realm as well. All of these things are completely new and things that we never thought we would be doing. And I would say all of that has stemmed from both being a partner to someone with, sorry, on the OMS program, but that has just really shifted how we've looked at taking charge of our health and our lives. So, yeah-

Geoff Allix (02:10):

I certainly-

Leah Tsirigotis (02:10):

... sorry. Long answer.

Geoff Allix (08:14):

No, no, it's great. I certainly think increasingly, I know a number of people with other conditions from Parkinson's to cancer and all sorts. And if they are shown a holistic approach, it's often so similar and you just actually start to realize, and in fact, something my neurologist said to me as well when I said, "What do you think about me following this?" And he said, "Well, actually, it's just healthy for everyone." And he said, "Actually, all the stuff like mindfulness, definitely." Now, vitamin D, the NHS in the UK are now saying everyone should take vitamin D, which is completely counter to when I first started doing it, when a GP said to me, "Oh, you shouldn't take extra vitamin D." But now, they're actually saying that it's official guidance.

The whole food-based diet absolutely is good for everyone. So much now actually, that you think, well, this is almost, it's not even just an MS thing. It's almost getting to the point of, it's almost mainstream. Like, this is good for you, so.

Leah Tsirigotis (09:20):

Yeah. And I think that's why it feels so normal to us now. I mean, when this first started, he was very active, and explaining it to people was really challenging and they really struggled to get their head around it. And we struggled to explain it. And it was very much from a perspective of, well, Alex has MS And this is very specific to MS, this very specific diet and lifestyle. So much so that for quite a while, I didn't adopt any really, practices myself of any of this at all, because this was very specific to MS And I didn't have MS, so I didn't need to do it. And that thinking very much changed in the first two years, I would say, where I actually started doing that connection and research and informing and reading around health in general, where I actually realized, oh, actually, it's not just specific to MS at all. It's exactly like you say, it's specific to so many autoimmune conditions and other diseases.

And it's about, well, for me anyway, just incorporating as many of these things as you can. It's not about being perfect. And go off to a restaurant and have all the chips and do you know what I mean? It's about enjoying life as well, but it's just about doing the best that you can and being informed and making good choices so that not only do you reduce your risk to something like MS, if it is something that you are potentially predisposed to with family connections to that, but also so many other illnesses as well that are just rampant as people get older. Trying to reduce that and learn how to manage something like that if you were to be posed with a diagnosis or something like that. So, yeah.

Geoff Allix (11:17):

And for another question, so we talk quite a lot about diagnosis and how that feels, and it's quite unique, I think to people, how they feel when they're first told that they've got MS, but what we don't talk about is how it is for the spouse. And I think I'm certainly conscious of that, because my wife was with me when I was diagnosed and you're thinking, how you feel, but also, it's a huge thing for the partner as well. So how did you deal with your husband's diagnosis and what were your initial reactions and how you managed that?

Leah Tsirigotis (12:02):

Yeah. This is something that still feels like it was yesterday. It's really fresh. I don't know if I'll ever forget it, but I remember exactly where I was. And I was five months pregnant at the time. It was our first child, we just found out we were having a girl a week or so before. And I knew that Alex had been having, he'd been like, "Oh, I'm struggling with my vision." Or different things, but it wasn't a continuous thing. It was just soft and he was just mentioning it. And in my head I thought, "Oh, vision, migraines. My mom used to have migraines. It used to affect her vision. That's probably what he's experiencing." Didn't think much more of it.

He'd been having physiotherapy at the time for, he used to play a lot of football, three, four times a week in the amateur leagues. And he'd had an injury, an ACL injury. And so he'd had an operation and then he had been out, recovering for probably three or four months and then had started getting back into football and would come home and be like, "Oh, I fell over a few times when I was playing football and I kept missing shots." And it was just passing things. And he was getting frustrated with how long it was taking him to get back to the level that he was before.

And never in a million years did I personally think that there was anything untoward going on. What I didn't realize was that he did in his head, but he hadn't really communicated that and I think it was because I was pregnant or whatever, but in his head, he was thinking something a lot more severe. He had a friend who'd recently been diagnosed with a brain tumor and things like that. So in his head it was quite deep. So anyway, I was five months pregnant, at home after work. He was like, "Oh, I've got an appointment for another checkup with something." It wasn't important enough for me to go along. Didn't think it was going to be anything. And he called me and he said, "Oh, I've got great news. The doctor told me what he thinks might be wrong with me." So I said, "Oh, okay." He's like, "I don't have cancer or anything like that. So it's fantastic." He's like, "Yeah. Yeah. He just thinks I've got something called MS."

At which point I re-questioned, "Sorry. Did you say, 'He said he thinks you've got MS?'" And he was like, "Yeah, yeah. Brilliant." And I just broke down instantly on the phone. And my experience with MS was limited but was not a positive one. He wasn't expecting that, and he really understood my reaction, but then he then had a 45-minute journey home. And I was a bit of a mess initially to deal with that. And I think the next few days, so I don't think we really slept that night. My instant reaction was, I will find a cure for this and we'll overcome this. Obviously quite naively, but didn't sleep, stayed up all night, doing a lot of reading.

Went to work the next day as normal. Both of us did, didn't stop. Went to work, got on with the day, came home, carried on researching. He was diagnosed on a Thursday night. I think by the Sunday night he had made the decision to go with the OMS program. We'd actually, I mean, as I said, we did a lot of reading, but there was actually serendipity on the Saturday, an article in a newspaper that was talking about the OMS program. And it was a whole full-page spread about someone who had MS. And it was one of those things where you were like, "Wow, how has this happened two days after I found out about this?"

And it was actually an article, I think George and OMS have launched maybe that year or the year before. And he was coming over to do the first conference, I think in Brighton either that weekend or the weekend before. So there'd been some news about it. And we read about this and we'd already seen it as part of our research. So we went back to the website, ordered the book, read through it. And Alex just really connected with it. I think there were maybe some stories, I think potentially mainly George's, but a few stories on the website at that time of people who were living well and had adopted this program and had been living with MS for a few years, quite a lot of years following this type of lifestyle. And it just was something that he just decided to adopt instantly pretty much.

So by the end of that weekend, he'd adopted it. And I think, I mean, that was the initial diagnosis. The next six months plus were really tough. I think mentally, he was going through a lot. Well, we both were, but him specifically, and I think it's hard enough going through something like a diagnosis where you just don't know what's going to happen in the future and wanting time to speed along so you can see what's going to happen. But also, when you decide to make a decision like going down a route of quite radically changing your life at that time, that's a huge thing for anyone as well. And to be doing both at the same time, it was going to be a real challenge. So I just stepped in and stepped up at that point and just tried to allow him the space to be able to just process what was going on without having to worry about some of the basic things of life.

So started taking lots of different vitamins. I'd get all those out for him, make his meals, make packed lunches, try and take his mind off, "Oh, I'm really hungry. What can I eat? What can't I eat?" And make that really simple for him. Supported him with learning how to meditate. And he came to realization, he wasn't going to be able to play football anymore. And that had been such a huge part of his life. And there was a real mental health aspect of this that I think at the time was overlooked and thankfully seemed to become, again, more mainstream. People are talking about it a lot more, but it was really difficult, I think, for a male at that point to be going through something like that and not knowing what to do with those feelings. So really just trying to step in and hold him together and try and positively take each day as it comes whilst also wanting time to speed up so that you can see what happens.

Geoff Allix (19:00):

So in adopting the OMS program, so specifically, well, I mean for you, but more actually for having a young family, what are some of the challenges that you've had to overcome with Alex adopting OMS? I mean, it's got to be... because kids are fussy enough anyway. So in terms of eating and things like that, how do you deal with the challenges? I mean, is it just like, they don't have a choice? Or how do you deal with that?

Leah Tsirigotis (19:35):

Interesting one. So specifically with kids, so fortunately, our kids weren't born when we adopted this. So it is somewhat really natural to them, but obviously as they grow up and they're at school and they see, oh, this person eats that or does that, or whatever, you get questions. And we've always tried to be just really honest and open with them and not try and take away a choice from them but educate them around why we at this stage in our lives feel it's appropriate for us to carry out certain activity or be mindful of something or eat a certain food. And thus far, they've been quite open to that. They never look at it as, "Oh, I can't have something," or "I'm doing something completely different."

I think kids are quite, they listen, they ask a question, you answer that question honestly and openly and they're just like, "Okay. Makes sense." That said, it is a challenge. They are children. Lockdown, I can't remember how many times they've asked, "What can I eat? What snacks? Are there any snacks?" And sometimes you can feel, I definitely did at the beginning. Like, "Oh, they're going to miss out on this stuff or the other." I think it can be a challenge sometimes to get them to eat a variety of food. When they were younger, it was easier. As they grow up, they start developing their own opinions about what they like and what they don't like.

We try to eat as much as we can, the same food at the same time, I think that's really helpful. I try and educate, our daughter is older and I think she understands quite a lot more about making healthy choices and understanding what's a healthy choice and what's not but having the choice to make that choice within the realms of what we eat. I think another thing, as a family, eating very similarly means we don't have food in the house that no one can't eat. So everything in the house is open to everyone. And I think that's really helpful. I think it would be a struggle if you had [inaudible 00:22:10] that were out of bounds for specifically children as well, because then they do feel like something's being pushed on them, but we're just quite open to anything. If they like something, they eat all of it, if they don't want something, then they choose not to eat that.

I try not to put too much pressure on food. I think there can be a lot of negative connotations around that, "You can't eat this. This is bad for you. This is really good for you." And just allow them to come to that experience on their own. When we make new meals, sometimes I might just sit and eat a new meal on my own and they might have had something else. And then actually they come over and they're like, "Oh, what's that? That looks really interesting." And then they'll try it, they'll be like, "Oh, next time. I'll have that." Without putting this pressure on, "You have to sit and eat this meal."

And that thus far has worked, they're not perfect at all. As I said, Alex is definitely the healthiest out of all of us, in terms of the foods, but they'll have crisps, there's plenty of vegan biscuits, but definitely not the healthiest choice for any children, but there are. And I think having that there as well, lets them know they're not missing out on anything and it's not something they have all the time. And if you restrict anyone from having anything, they want it more. So you keep it open. And they're very good at asking questions when they're with other people as well. Like, "Does this have this and that?" If they say, "Oh, it's got milk in it," or something, they're like, "No worries. I won't have that." It's not a big deal. And I think we're really fortunate with that. I imagine it'd be harder if they were 10 and we were all of a sudden sitting down and being like, "We're radically changing your diet."

Geoff Allix (23:54):

Yeah. That was more where I was at with my kids because they were that age. And I think that idea of just educating them, because so where my kids are at now, my son will be going off to university. So we'll have no control over what he eats. He actually is away Monday to Friday or was when he was at school. So then he could do what he wanted really, but they're educated into why you're doing this, but we are not scaring them and saying, "You are going to get MS." Because they still have a very low chance even as a family member, but it's like, "Well, even if you don't, this is good for you and you are massively reducing your chances of getting MS." And so just educating them and because I know that he's going away next year and he could eat any sort of rubbish.

Now there is an element. Yeah. Like as you say, Alex is the healthiest and I probably am in my family. I think he's certainly well aware of, he'll look on a packet and go, "Look, it doesn't have any dairy and it's no saturated fat." And I'm going, "Yeah, but it is entirely made of sugar and chemicals."

Leah Tsirigotis (25:14):

Yeah. Processed foods that you can't go buy off the shelf.

Geoff Allix (25:18):

It's like, there is an element of, "That's not good for anyone." So he sometimes gets that a bit wrong, but, then it's so much healthier than what I, I mean, I'd imagine what I ate when I grew up. And-

Leah Tsirigotis (25:29):

I often revert back to that and think I've got to where I am now, so I can only trust that my kids will do the same. And it's trust, but I think you're completely right. It's the education point. If someone understands why they're doing something or is informed about something, then they're making an informed choice. Whether that choice is the best choice or not, at least they know the outcomes of that. And for me it's, I try and teach the kids about connection to your bodies and connection to the food. So if you're eating something, let's take MS out of it. But if you're eating something and it makes you feel a certain way, so a negative feeling, like it makes you feel really bloated, you need to go lie down or it makes you feel sick or gives you a headache or something, connect with that and be aware of that and try and identify what it is that's doing that.

Certainly, if you eat something and it makes you feel like you've got loads of energy and gives you really positive side effects, recognize that as well. And you'll start making choices that work for your body as well. And again, I think that's probably one of best things as well, because the reality is all these processed foods and everything, they aren't naturally around. And I'm never going to say, "Actually, you can't eat this, this or this, because it's not a banana. It's not a whole food," but actually they'll start realizing, "Actually, do you know what? When I eat that I get the satisfaction immediately, but after I just feel really this and that, and then it means I can't go off and play with my friends in the park as I want to," or "I can't do this or I can't do that."

And I think that for me is the main thing to probably teach anyone, but definitely what I've been trying to go through with my kids, so that they just have that connection so that when they get older, whatever choices they make, they're making the right choices for them and their body.

Geoff Allix (27:20):

And on a more positive note, did you start to see positive effects of a healthier lifestyle for Alex and also for yourself?

Leah Tsirigotis (27:31):

Yeah. For Alex, it probably felt like a longer search. It felt like quite a long time to see benefits, I guess, of the whole program, but also food as well. So he was given an initial diagnosis by the neurologist. He then said, "Okay, well, we now need to go and do a few other different tests," lumbar punctures and all that, I think. But he obviously started OMS a few days after that initial diagnosis. And then as part of the next few steps, I think two months after, he had an MRI and it came back and it had two more lesions and it just felt like, "Oh, he's been doing this diet for two months and his lifestyle and he's got more lesions, it's really frustrating. It's obviously not working for him," and all of that.

And that felt really weird at the time. And looking back now, it's just quite clear that you can make a change overnight, but the effects of 30 years of the way that you've been treating your body, doesn't take a day, 2 months, 24 hours, maybe it can. Certain things do change very quickly. So it did feel like a really long time. And it was also clouded by the emotions of everything that was going on. But a year after that, he had an MRI and he had no new lesions. The year after that, again, no new lesions. In the third year, it was no new lesions. Plus some of the lesions had disappeared. And after four years, it was the same. And so it was like, "Oh, wow, this is doing something," but it can be frustrating in those first years, which feel like the longest ever, to see, I guess, pure science on an MRI.

In terms of physically and day-to-day, probably earlier than three, four years. I think the first 18 months were very up and down and tough. He in some ways became a lot fitter. He started running and really developed that and was getting, he wanted to use speed as a metric, was getting faster and faster as he was going. And so that was a really positive. He wasn't a runner before this at all. I think he'd done that one running event that I'd seen him at before and really struggled. And he started doing 5Ks, 10Ks, and then built himself up to marathon and then started doing a few marathons and was getting faster. And they were becoming easier to him. Before he used to run and then after he finished the run, he would just collapse and he would stop that collapsing and he might just need a few minutes to get his vision back and it would be good. So they were really positive steps that we saw.

Another thing that really helped, actually not necessarily direct to do with diet, but very OMS related was he went to a retreat in Austria, probably about two years after diagnosis. And that was hugely transformative. For him, it was a huge turning point mentally. And I think that his mindset really shifted. And I think that was quite a big burden that came off of him that had been pulling him down. Meeting other people in exactly the same or not exactly the same, but a very similar situation to you, who are approaching things in a very similar way. And seeing people who have just been diagnosed versus people who have been on this program and diagnosed for 10 plus years and seeing how different people are coping and managing. And that was really, I think, huge for him. I don't think before that he'd met too many people who either had MS or were taking an approach that he had taken.

And a huge level of positivity returned into his life. And I think at that point, life started really returning to, what I would say, normal, but a positive step forward where we weren't necessarily thinking about MS every single day. And all of that is just down to time. It's a huge mental challenge when you're diagnosed with something like that.

Geoff Allix (32:09):

I think that the community aspect's really important as well. That's not part of any programs, is not part of the OMS program that you need to have community, but when you're diagnosed, you're diagnosed as an individual or possibly with your family, but certainly not with other people with MS. And I know I don't see anyone else. I see my MS nurse and I see my neurologist. And so there's no form of... because it's private, isn't it? So you never go to a doctor and see, "Oh, here's the other people who've got flu." You see them on your own, so there's no community. And so you are on your own. And you live in London, obviously quite a lot of people there. And so even then, you're still quite isolated. And so who do you talk to?

That community has been really important to me, where you start to get, whether it's an OMS community or broader. And actually, because my neurologist runs weekly exercise courses and that's been really good there for people with neurological conditions, but we quickly work out who's got what. It is not just people with MS, because we've all got similar symptoms actually, but there's a sort of community there, but that's the only purely medical side where actually we have that group of people. So the OMS Circles have been really beneficial in that you actually have a community where I can talk to people. And they know what you're going through. Although I say it's unique to each of us, but we understand that as well. So there's an understanding there.

Leah Tsirigotis (33:44):

Yeah. And I think that was what, one of the first books we bought. We bought the original OMS book and then there was Recovering from MS, personal stories book. I think the OMS book with all the science was great because it really actually helped to understand, "Why am I doing this?" Which I think is really important to understand when anyone decides to start doing any change that they might struggle to stick with. It's actually understanding, "What is it that I'm doing this for? And what is it going to do to my body?" Otherwise, it's easy to just be like, "Oh, I don't see immediate changes," and therefore not continue. But the Recovering from MS book was just the perfect pairing with that book, because it put it into real life people, these people exist.

Some of the stories in there are people who've really been at rock-bottom at the point of diagnosis or even before they were diagnosed. And seeing their journey and the steps that they took and where they got to. And that was so positive in terms of reading that and thinking, "Okay, this isn't just some program that may or may not work that I'm just going to give a try. It's something where someone wasn't doing something, they were experiencing X and they started incorporating these pillars into their life and their life changed." And that was really, really helpful early on, when you didn't have a community of people to go and talk to. And to be able to read those stories and think, okay. It just gave you a level of hope and it helped that whole feeling of wanting to know what's going to happen in 3, 4, 5 years’ time from now. It suppressed that a little bit and he thought, "Well, actually, I'm just going to get on with this. And hopefully I'm experiencing similar things that hundreds of other people have experienced as well."

Geoff Allix (35:40):

So talking of books, the most recent Overcoming MS book, the Overcoming MS Handbook, which was this time edited by Professor George Jelinek rather than written by him. Or he's co-editor and has a number of different authors. And you are actually an author of a chapter on Prevention. So could you tell us a bit about your experience working on the project for that book?

Leah Tsirigotis (36:11):

Yeah. Yeah. Yeah. So I've written a personal story that goes alongside a chapter around family and MS and well, at least I think that's what it's called, I should know, but it's definitely to do with families. And then, I just woke up one morning to an email from George, inviting me to write a personal [inaudible 00:36:35] for this new book. And then it outlined everything about the book. And it was really interesting to read through the concept of the book and in its infancy at that point and see how it was designed to fit with the newest version of the OMS Handbook that I think came out towards the end of last decade.

And actually, the book I've just mentioned was one of the books that, the recovering stories and this felt like a good pairing with the new book in the same way that had felt like a brilliant pairing with the original version of the OMS book, which was to have people with MS writing these chapters from a personal perspective. That can be quite uplifting and helpful to people who are newly diagnosed or new to the program. And just looking for the hope and that kind of.

I was a bit skeptical as to whether I could deliver or live up to the pressure I was putting on myself to do with this. And I'm not sure I achieved that, but it was quite an overwhelming sense of responsibility, even just to write, I think it was 500 words or something. To get as much into that as possible, to just potentially connect with another husband, wife, partner, whoever of someone who's trying to hold it together for their partner, because maybe their partner's really struggling and they're like, "I've got to step up," but they need to know that there's other people out there who've experienced the same and what have they done and how have they come through it.

And as I said, I don't know that I achieved that necessarily, but it was a lot of pressure, but it was really exciting to be part of it and seeing emails going back and forth and seeing all the different people involved. They're all people from the community within OMS, who are living day-to-day with MS, all in different ways and all focused on their specialist areas as well, which was, obviously very honored to have been chosen or thought of but tried my best.

Geoff Allix (39:05):

And could you, just very quickly, because this could take up a whole episode, but so preventing MS. It's not a sort of on-off switch, but things you could do to prevent MS for family members. What would be some of the key things that would be worth considering?

Leah Tsirigotis (39:30):

I think education is a key one, which I know we've spoken a lot about. So really understanding MS and what it does to the body and what options there are in your control for you to be doing and understanding why you would do those. So I think being informed is really, really important. Understanding that genetics do play a part, but not everything. And I think, I don't want to misquote, but I always have this number in my head. So don't take this as a quote, please go off and do your own research, but I think it's something like genetics play a 30% part in the role of you potentially developing something that you are genetically predisposed to. So it's not everything. And the other 70% is everything else around that, which is basically lifestyle.

So if you have a family member that has MS and will take [inaudible 00:40:29] that this will be relevant for so many different conditions, depending on that family connection that you have, something like a sibling is probably one of the highest because you've got the closest genetic makeup, but if you have a parent and so forth, your risk of developing something like MS will be higher than potentially someone who has nothing within their family. Although I say that, we're not aware that Alex had any family in his, sorry, anyone in his family who had MS, that your risk will be higher, but knowing that that doesn't have to be everything. And so therefore I think this whole, which is the view that we took with our kids, is that, yes. Okay. MS is probably higher on the list than maybe something else for them.

And so therefore we're going to look at how can we help and support them to build a good lifestyle for themselves, including, not just food. And I think food gets looked at as the first piece, but our kids know how to meditate and they don't look at that as anything weird or obscure. Our daughter knows if she's getting stressed about anything or is feeling anxious about anything, exactly what she needs to do with her body to go do that. For her, she goes up and does 20 cartwheels. She knows that movement's going to help her do all of those things. And so we've just been, we don't sit down and teach the kids, but we just lead by example, specifically for our kids, but also food, just the way that we live our lives. And being active is really important for us.

Being mindful of the fact that they can go on, just like you said, your son's about to go up to university. So you are going to have very little control and maybe have had little control since he's been quite a bit older. I'm fully aware of that, but I'd like to give them a really strong foundation and platform to build on from the beginning and the education for them to understand any kind of condition. There's a lot of control that you can have if you go off and understand what's going on. And there's a whole load of benefits to specifically the OMS program, as we said at the beginning, on different conditions.

So I think heart disease is the number one leading killer in the world. Whole-food, plant-based diets are proven to support things like that, as well as lots of other different conditions that are out there. So, yeah. Sorry. I don't know if that necessarily answers your question, but I think education is always a really important part. And having someone understand that it's not just, like you said, "You can't have this," or "You should do that." Educate them as to why, is a really big thing for me.

Geoff Allix (43:04):

So Leah, thank you so much for joining us on the Living Well with MS Coffee Break, to let the community get to know you a bit better, but we have one last question which we have as a bit of a tradition for our Coffee Break guests. And that is specific with you. If you tap into your experience as being a spouse of someone with MS and part of a family of someone who adopted the OMS approach, could you share a piece of wisdom maybe for people who are newly diagnosed or newly following the OMS program, how you could make it easier to adopt the OMS program?

Leah Tsirigotis (43:45):

Yeah, gosh. Hard one, but I think taking it day by day and try your best and know that that will be good enough and don't put too much pressure or worry or overthink things too much. If one week you achieve nothing else but meditating for five minutes every day, that's a step forward from the week before. Next week, try and incorporate something else. And if you get to the end of one day and you've missed something or you ate something that you wish you had eaten, or you didn't intend to eat, don't obsess over it too much because the stress of doing something like that isn't worth it. It'd be worse than having gone off and eaten something incorrectly or missed the meditation anyway. And I think that's really important.

And probably the other side is just really understand and connect with why it is that you are doing what you're doing. So don't just do it because you've read in a book that's what you should do, do it because it feels like it's the right thing for you to do and understand the implications of doing it well. And then potentially doing 50% of it and make sure that you are happy with whatever choices that you're making with all of that. And start connecting with your body, it's condition, the symptoms that you're experiencing, how you respond to an activity or food, whatever it is, and how you feel with all of that.

And build your own individual OMS program that works for you. This is a guideline of things that you can do. So if you want to do something that's not on there and it feels good to you and you get benefits, go do it. If you try something that doesn't work for you, that is in the program, then you don't have to do it, but it's never going to be sustainable if you try and do something that doesn't feel natural. So always reconnect back to what feels right for yourself.

Geoff Allix (45:45):

Okay. Thank you very much for joining us, Leah Tsirigotis.

Leah Tsirigotis (45:47):

No. No, you're welcome. Thank you for having me.

Geoff Allix (45:51):

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at [e-mail]. We love to hear from you. You can also subscribe to the show on your favorite podcast platform, so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate. To learn more about Overcoming MS and its array of free content and programs, including webinars, recipes, exercise guides, OMS Circles, our global network of community support groups and more, please visit our website at www.overcomingms.org. While you are there, don't forget to register for our monthly E-newsletter so you can stay informed about the podcast and other news and updates from Overcoming MS. Thanks again for tuning in and see you next time.

The Living Well with MS family of podcasts is for private, non-commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.