S3E2 Coffee Break with community member Luke Johnson

Geoff Allix  00:01 

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community. Our guests will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life, you can check out our show notes for more information and useful links, you can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So, get your favorite drink ready and let’s meet our guest. Joining us on this episode of The Living Well with MS Coffee Break is Luke Johnson from Massachusetts in the northwest of the United States. So welcome, Luke.  

 
 

Luke Johnson  00:59 

Welcome. Thank you for having me. 

 
 

Geoff Allix  01:02 

Our audience wants to know a bit about you and your life. So could you share some background info about your family, personal life, where you’re from what you do to give listeners a sense of who you are?  

 
 

Luke Johnson  01:16 

Well, I live in Western Mass. I work in this sort of changed for me, I went to graduate school for a few different things, and then when I got MS, that changed, I had to kind of pivot, big time from that and it was a couple of years after getting diagnosed and I was diagnosed about eight years ago and that will be in like a few days actually. It was a couple of years of that and in conjunction with finding the OMS protocol that I decided to pursue a career in basically fitness and wellness. So I was kind of I was sort of trying to walk the talk and that kind of gets overused, but I really wanted to do that. You know, my diagnosis was like many it was very quick, I mean, I had an MRI, a spinal tap all this stuff and then I’m learning that I have MS and I felt like I needed to pivot into something that was going to keep me moving, keep me focused and the kind of work I was doing before it just didn’t seem, I was working for years in wilderness therapy program. 

 
 

Geoff Allix  02:26 

Yeah, in the UK we call a spinal tap a lumbar puncture, which is a shame because “Spinal Tap” is my favorite film. 

 
 

Luke Johnson  02:36 

Stonehenge, it’s one of my favorite Spinal Tap songs. 

 
 

Geoff Allix  02:39 

I’ve actually seen Spinal Tap at Glastonbury Festival, they came on and they had Stonehenge. So when did you come across the OMS program? And what was your experience? And why did you start following OMS? 

 
 

Luke Johnson  02:57 

Yeah, so it was about about two years in and I was going through what a lot of people with RRMS will go through, I was kind of cycling through some of the meds trying to figure out what was working best for me. I was on Betaseron that failed for me, then I hopped on Copaxone and it was around that time I learned from my partner I learned of OMS and she’s you know, she is like a bonafide scientists she works at local college and I think she was very important for me because she was able to kind of distill it down and call the data, look at the peer to peer reviewed literature, kind of get a better sense of whether this was something that was I could take very seriously and she convinced me and I started it you know I started it immediately. I had a pretty good discipline around my health and exercise and such before so to see that it was something I could do that you know, we were just talking about this the way I looked at it was, you know, sort of worst case maybe my MS doesn’t shift in the direction I needed to but you know, I’m sorry best case it’s like I actually have some improvement of MS and worst case I am already on a very very robust diet that would actually benefit my health in big ways. So I was looking at it like a win win no matter what. So I started it immediately and I think very quickly I could understand that it was like, I could have a real kind of attitude a shift around like what I could do to actually improve things for myself. You know we had this real kind of take your medicine and wait and see attitude around MS with my neurologist and I really wanted something I can do with more agency, right? So for me, the OMS protocol was something I could do, just kind of I can kind of add more to like whatever it is, you know, I wanted to do to actually improve my own chances and the trajectory of MS. So, I think very early on, I looked at it like, you know, every little bit of flax or fish oil at the time, we’ve kind of shifted towards flax more, or at least I have, which I’m thankful for. But veggies and cheeseless nights, all that was, every time I kind of did that, I could look at it as taking a positive step towards my own health. Whereas taking the medicine for me, that was that was also good and I felt like I had some sense of security around that. But to me, that felt more passive, whereas the OMS protocol felt like a much more, because it was a more personal agency, I felt like it was a more aggressive tack for me and that was important. 

 
 

Geoff Allix  06:06 

And what did you find hardest to implement of the OMS protocols? 

 
 

Luke Johnson  06:13 

Well, I think because, and I think this is probably, you know, in my interactions with people who have explored this protocol that, you know, we have, at least here in the States, we have an attitude, a lot of times around wanting things quickly, you know, I work in fitness and wellness, I have clients, and when their goals are on strength, or weight loss, or what have you, they want things quickly, and it’s frustrating that it takes time, and I think was something like MS especially when you’re several years, when you were just saying that you were, you know, kind of many years into your disease before you got diagnosed. I think for people who are many years in it can be very frustrating that, you know, you have X number of symptoms, right, and you start with your flax, and you start with, you know, adhering to the protocol, you’re you know, you’re avoiding cheese, you’re avoiding, you know, heavy Omega 6 things and week one goes by, a month goes by and you’re not feeling any better, right? That’s hard. You know, people want things quickly and for me that time in, you know, we mentioned the the oil tanker analogy, and that, it takes a lot of time to kind of turn where the battleship, you know, turning the battleship around when there’s momentum, it takes time. And for me, that time was like two years and that was very hard to deal with, you know, but after four or five months, I’m like, alright, well, I’m not getting worse, that’s good. But I wanted to see some improvements, but those improvements didn’t come around for me for a couple years. But I mean, I remember the day where I’m out biking, and I’m like, “Oh, I didn’t even have this awareness that my left hand wasn’t numb.” I was shifting, I was playing fetch with my dog, like, things were feeling better and wow, when I had that realisation, it just, you know it was like, it felt like, you know, there has been, I had crossed, like, the Rubicon or something like it was a big deal for me.  

 
 

Geoff Allix  08:12 

I found similar in it. I had double vision was one of my symptoms and because I didn’t have it all the time, then I didn’t really notice when I wasn’t having it and it was only after a while, I thought, hang on, that hasn’t happened for weeks. And normally, it would happen probably daily and then I didn’t really notice because it didn’t happen every day. I just didn’t notice it sort of started to go from, you know, almost daily to, or maybe twice a week to maybe weekly to oh, it hasn’t happened in weeks, weeks, weeks. Oh, and then it just carried on and it has never happened since. And so it was, yeah, it was a slow thing and, it was actually my neurologist, in a way who convinced me that OMS was doing something because he said, You’ve got over relapses, you know, once you got over a relapse, another year down the line, you don’t normally see improvements. So he said those improvements are coming because of something you’re doing to improve your situation. It’s a progressive condition, so you shouldn’t really see improvements. 

 
 

Luke Johnson  09:18 

Yeah, and that’s, I’m sure that yeah, that flew in the face of what he had learned and my neurologist sort of, you know, he was had the algebra like, he was interesting, because he was pretty Pollyanna about it when I first got it. He was like, you’re going to be fine, you’re going to be fine and I said, I hope so, but, you know, I knew he was just saying, you know, you’re a young guy, you’re fit, you’re going to be good, I see much worse than you and you know, it was very early days and I knew that, you know, even though he was being very positive that that was not going to necessarily be my outcome at all. And I really wanted to do some things to kind of, you know, to mitigate the progression, but you know, one thing that really drives home for me with this protocol, and you know, it took years to get better. And then when I started getting better, I started to realize that before I was actually diagnosed things like fatigue, heat sensitivity, things of that nature, were always present, I just didn’t quite understand it, it was always kind of lurking under the radar. But after years on it, and I’ve been on in about five and a half, six years now that a lot of these things kind of they just cleared up for me, you know, my, my fatigue and things like that. And I never had like super debilitating relapses, It was,  you know, it was fatigue, it was my left eye, things of that nature. But, you know, one thing I want to stress was that there’s a podcaster, I really like who, he’s a vegan athlete, and he’s in recovery, and I’m not in recovery. But he throws around this, this notion that the road gets narrower and I find that very interesting, because what happened for me was, you know, first you’re making these changes around your diet, and then you start making these changes around your exercise schedule, you know, you started having earlier nights, things like that, maybe you’re re-evaluating and you’re kind of you’re taking a more introspective, look at your own life. You’re interrogating aspects, like your friendships, maybe your relationship with work, your relationship with stress, all these things start happening and that happened, because I chose a path like OMS, that wouldn’t have happened for me, If I was like, alright, I hear about this OMS thing, I’m just going to take the best drug I’m aware of and that’s okay, if that’s what someone wants to do. There’s no, I’m not saying that is what you know, one has to do, but for me, personally, taking the OMS protocol and for me, that was like, I was able to confront a lot of, you know, sort of delusional behaviors I had around my own health that, you know, I could get away with being really active, but also, you know, eating you know, a bunch of, you know, food that might not have been so healthy for me, or maybe being more stressed out with my job, maybe having kind of relationships with people that weren’t weren’t good for me. So it was like this kind of radical change that happened, that I don’t think would have happened if I had only taken a kind of a drug that I had confidence in, like, does that make sense? Like, I was able to do so much more, because this was a very lifestyle focused change. And not just, you know, taking a drug that I thought was going to help me. 

 
 

Geoff Allix  12:38 

Yeah, so many side benefits as well. I mean, just the mindful side of things. Yeah, I’m really consciously I’m getting stressed out and I know that stress is going to cause my symptoms to get worse that’s almost instant. So I use mindfulness techniques, like just like micro mindfulness, if you like, just try and just use my breathing. And that’s just a good thing, you know, just start to be getting stressed and it annoys my wife sometimes, because sometimes she wants to have an argument. Something like I didn’t put the bins out or something and she’ll be wanting to have an argument, she’ll say, you’re just doing that breathing thing again aren’t you and chilling yourself out. 

 
 

Luke Johnson  13:24 

You know, the road is long, kind of like. There’s, you know, you start doing something like you’re vegan with fish, you’re being very careful on your diet, and then you incorporate mindfulness, you know, and for me, like when I started this diet, I couldn’t metabolise alcohol, so, you know, I like to have a couple of beers, sometimes, that actually became a little bit more difficult. I didn’t feel so good, I didn’t sleep as well as like, alright, well, maybe I’m not really drinking too much anymore. And these things kind of happen for me. And then you start changing relationship around work and stress and all that, as we said, and I’ve really appreciated that aspect. Because, again, I confronted a lot of things around my own life and stress is a big one, too, right? I mean, you know, I think, you know, when you start eating differently, you have a different relationship with those foods and that kind of takes time, but when you when you start confronting stress, that can kind of seep into a lot of aspects of your life, right? And it’s critical for something like for something like MS, of course. 

 
 

Geoff Allix  14:33 

So we’re recording this in early 2021, which is obviously an unusual time because of COVID-19. So have you had to adapt your daily healthy habits to realities of COVID-19 and how have you managed with following the OMS program in these times?  

 
 

Luke Johnson  14:52 

I mean, for me, because I work at a college, I have a staff faculty position teaching and running a facility there at a college locally here and right when COVID hit, I was furloughed. So I’ve pretty much been in that kind of limbo state since. So for me personally, I haven’t had to do a ton to change my lifestyle beyond well, I mean, that’s kind of ridiculous. I’ve had to do a lot of things to change, but as far as like the diet itself, you know, I’ve made that, you know, number one priority. But I’m not, I’m not exposing myself to people, I’m doing things like we’re doing here, I’m Zoom chatting with friends, 

 
 

Geoff Allix  14:52 

And how are you managing with exercise?  

 
 

Luke Johnson  15:42 

Exercise has been a little bit trickier and that’s a good question. I liked going to gyms because of the social connection there, I enjoyed, I liked seeing people, I think that’s as important as the exercise right, in interfacing with people and getting the kind of oxytocin blasts from having those connections. For me, I’ve actually taken a lot more of a compassionate route on my own exercise. So I’m focused on hiking with my dog, walking, I’ll get on the exercise bike occasionally. But a lot of these things, and I’ll ski sometimes too, but a lot of these things are not open to me, because I can’t go to the gym, right? So I’m trying to get into some strength work, I do some, some yoga, on TV, you know, whatever I can get. But I think what’s you know, beneficial is, when you have the foundation of a really good diet, I feel like you have a little bit of flexibility there. Like, I’m not feeling like I’m constantly fighting against exercise, so long as I get a good solid walk in a day with my dog, things of that nature.  

 
 

Geoff Allix  16:51 

And for a bit of a left field question, do you have any unusual interests or wacky hobbies that you could tell us about? 

 
 

Luke Johnson  16:59 

Wacky hobbies? You know, I think you know, we were talking before we started recording, I think one thing that I do a lot is the cold exposure stuff, but that’s probably pretty, that’s probably not too wacky in the OMS world. So I do a lot of stuff like that I do a lot of mindfulness work. You know, interestingly, before I got sick, I had just done a 10 day silent retreat and that was very rigorous; no talking, no texting, no phone, no exercise, no nothing but meditating and not even looking at people for 10 days. And right after like two months of that I get sick. So it was kind of in this sort of, I don’t know, maybe that was really important for me in terms of getting my head wrapped around this the enormity of something like getting MS. Because that is like a that’s like a sea change for anyone, right? 

 
 

Geoff Allix  18:04 

But that’sl pretty full on 10 days. That’s just 10 days of just meditating. No, literally not speaking. 

 
 

Luke Johnson  18:10 

Yeah, it was interesting, I signed up for it, and then I gotten laid off from a job and I wasn’t gonna be able to take it, but because of that, I was able to take the retreat and so I did it. And then, you know, two months later, I got sick. So I was like, Wow, this the timing of this is kind of surreal. But no, I don’t, you know, my hobbies are probably  fairly pedestrian. And I like a lot of like, I read a lot of like, the ancient Stoics you know, things along those lines. I have like a copy of Marcus Aurelius on my bed, you know, on, you know, my nightstand. I read that. So I mean, things like that, I guess. 

 
 Geoff Allix  18:58 

And just to wrap up, is there one piece of advice that you would give to anyone who’s new to the OMS program? 

  

Luke Johnson  19:07 

Yeah, I mean, sort of beyond what I was saying around, you know, having appropriate expectations. That’s, I think that’s huge. I do think driving, you know, this home, I think, when I first learned of the OMS protocol, and I was a few years in, and I was feeling good and I had this first awareness, like wow, I’m actually my health is getting better and I knew some people locally who had MS and I couldn’t wait to tell them about this. And it was interesting, because one was excited, and one was like, “No, thanks, I have no interest in that” and I think that was hard for me because I had this like attitude like, wow, how could you not want to do this and you know, I had kind of some reckoning there and I think what occurred to me there is that, you know, she wasn’t ready to embark on a challenge like this, you know, because it is challenging to make a big radical change like this. But I think if you decide that you want to do something, like, follow this protocol, and you’re willing to put in the effort to make those changes, and to be really compassionate with yourself, it is there’s an awesome kind of responsibility to have the belief like, for me, I decided early on, like, I think this can make a big positive change and there was a lot of pressure there for me, you know, because every time I slipped up, like six days, I was A Okay, and then, you know, then one day, I’m non compliant, and I sneak in a few handfuls of corn chips, and then I’m 10 handfuls of corn chips, and I feel awful about myself, like I’m having a relapse, right? That was very, that was, that attitude attitude can be a little bit disruptive. So I kind of came around, like, it’s okay, you know, I’m taking in that, you know, think about a week, I’m taking six positive steps forward, I’m taking one step back. And after a while I got, you know, fully compliant, and I did make mistakes, and I was, I was happier about that. But I think I think compassion is a huge piece here and you need to be okay, with not being perfect from the, from the running, right? Because it’s hard. I mean, for some people, you know, maybe don’t already have a really rigorous relationship around their food and exercise, there’s a lot to be asked for to incorporate, you know, 30 to 90 minutes or something of exercise a day and then, you know, doing all these giant dietary lifestyle switches.  

  

Geoff Allix  21:40 

I think when you read the book, that each chapter, if you like, they talk about how much improvement statistically you can get and you think well, okay, if I do this, I could get 20% less chance of having relapses and so if you’re doing, you’re doing mindfulness, and you’ve given up saturated fats, you’re maybe still eating chicken or something. It’s like, okay, you’ve done a lot of things that everything you do. It’s not just an on or off thing. So I think if people are coming to OMS, and they think, well, I can’t make. Yeah, you’re still doing, you know, if you do 75% of OMS, then you can actually, you’re still massively improving your potential future disease course. Obviously, it’d be ideal if you’re fully compliant. But certainly, I mean, it is massive. I mean, I just went full on. I mean, I think it’s just the way I am and I just sort of did it 100% day one. But equally, I have not made deliberate mistakes, but I did have a pizza that I thought had vegan cheese on it, and they mistakenly gave me real cheese. Now I just don’t have any cheese, because I’m not really keen on vegan cheese it turns out, and the restaurant was horrified because they thought they’re gonna kill me because they sort of probably gonna have an allergic reaction or something. But then I didn’t I feel there’s no point of stressing about it. Because like you say, you know, if I’m having six good days and one bad one, and I kind of think about, it’s like rolling the dice. If you roll a double six, and you’ll have a relapse, well, all you’ve done is you’ve just rolled the dice once, ideally, stop rolling the dice. But if your dice occasionally, what are the odds of getting double six? pretty low, and yet, I wasn’t getting a relapse every day, no one is so. So ultimately, yeah, you’re and if it’s Progressive MS, you’re not actually each day, you’re not getting markedly worse than the day before, if you can try and, you know, reduce the days where the chances of getting a bit worse, are there then great. I think, if you’re starting out and doing what you can. 

 
 

Luke Johnson  23:53 

Yeah, you know, and I work, I work in the world of new year’s resolutions, right? And I see that and people are very hard on themselves with creating, you know, sometimes unrealistic expectations. I think rare is the person who can say, I need to do these 9 to 10 things and just turn it over the next day that I mean, that’s pretty rare. So for someone to be able to get a right six days out of seven, or even four days out of seven, at least for a few months, and then starting getting better. You know, that’s okay. I think it takes time, but I think it’s easy if you have the expectation that you are going to get it 100% right away, that it’s easier to quit, you know, quit the process and I think there could be obviously, you know, as someone who supports this, I would think that would be pretty bad. 

  

Geoff Allix  24:54 

Okay, with that. Thank you very much for joining us, Luke Johnson. 

  

Luke Johnson  25:01 

Thank you for having me. Appreciate it. 

  

Geoff Allix  25:03 

Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode show notes at overcomingms.org/podcast you’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at [email protected], 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 overcomingms.org/donate. Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world’s leading Multiple Sclerosis healthy lifestyle charity. We are here to help inform support and empower everyone affected by MS. To find out more and subscribe to our E-newsletter. Please visit visit our website at overcomingms.org. Thanks again for tuning in and see you next time.