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S4E8 Coffee Break with community member Linda Boueke

Listen to S4E8: Coffee Break with Community Member Linda Boueke

Welcome to Living Well with MS Coffee Break, where we are pleased to welcome Linda Boueke as our guest! Linda in an artist and singer who lives in Hamburg, Germany and follows the Overcoming MS program.  

Watch this episode on YouTube here. Keep reading for the key episode takeaways.  

Topics and timestamps:

02:24 Can you tell us a little about yourself, where you live and anything about yourself, you’d like to share? 

03:25 How about your experience with MS? Could you tell us a bit about when you were diagnosed? 

05:25 At which point did you come across the Overcoming MS Program?  

10:07 What are some of the challenges you faced at first in adopting the Overcoming MS Program, and how did you overcome them?  

12:17 When did you first start to see any kind of positive results in following the Overcoming MS Program, and what were these?  

15:13 You’re the ambassador of the Overcoming MS Circle in Hamburg. Can you talk to us about the Overcoming MS Circles experience, and what that’s meant to you?  

18:32 You conduct seminars about Overcoming MS principles in Germany, trying to raise awareness about the positive aspects of lifestyle change for people with MS.  

20:51 One of your guiding principles is the concept of flow. Can you tell us a little about that and what it means to you? 

25:40 That’s a good segue into things in your life in which you find “flow”, such as singing and dancing. Can you share a little more insight into your creative passions?  

28:04 If you tap into your experience with MS for a nugget of wisdom that would help people ease into and better adopt the Overcoming MS program, what would that advice be?  

Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. 

Transcript

Read the episode transcript

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 #29, where we are pleased to welcome Linda Boueke as our guest. As always, your comments and suggestions are welcomed by emailing [email protected]. We hope you enjoy this episode’s conversation with Linda from Hamburg, Germany. 

 

Linda was diagnosed with relapsing-remitting MS in 2014. She immediately changed her diet and after attending an OMS seminar in 2016, she started to adopt the OMS program completely. Since 2017, she has served as an ambassador for the OMS Circle in Hamburg, and she sometimes holds seminars in Germany to help inform others about OMS. In 2019, she has started a second career as a solo singer and performer. Following her dreams has become easier because OMS has helped her regain strength and focus. So she’s incredibly thankful to have found OMS so early. 

 

So Linda, welcome to Living Well with MS Coffee Break. We’re very pleased to have you on our program. And just to explain the purpose of this series is to get a better understanding of the members of the OMS community from around the world. And today you’re in the hot seat. So could you tell us a bit about your day-to-day life? 

 

Linda Boueke (02:24): 

Well, thank you, Geoff, for having me, and yes, I’m honored to be guest of your show today. About my day-to-day life, I’ve spent many years at home raising four boys and after working in marketing for a time, but then I got my diagnosis and I struggled to find some new balance really because obviously sort of a midlife crisis was culminating with the empty nest syndrome and with a diagnosis. And what happened was I had to walk a long way of reflecting and orientation, what I wish for in my life now and putting myself first after many years to remain as independent and healthy as possible for myself. Yeah. 

 

Geoff Allix (03:18): 

And was it an easy diagnosis? Was it obvious you had MS? And did the doctors diagnose you quickly? 

 

Linda Boueke (03:25): 

Well, it was a bit tricky really. In 2010, I had swine flu, which is a virus which happened to be here in Germany. And I had stomach problems and fatigue, even had to have household help for some time because I couldn’t cope. And I had many lesions in my brain really and took lots of tests, but I didn’t get the diagnosis then. I had speech problems and couldn’t write on the keyboard properly. And still the neurologist said it could be different things and sent me home like that. 

And in 2014, I had another relapse probably with tingling in the body, probably known to our audience. And I got the diagnosis from the radiologist really. It was quite a shock because he said, “Well, what else should it be if not MS?” 

 

And yeah, well then, I tried to find a way to cope with that. And I had the immediate feeling. I had to do something about that myself and got the impression this illness picked the wrong person to surrender to some future of doom really. And I got a feeling like Hermione in Harry Potter, she always goes to the library. So I turned to reading lots and lots of things and found out all I could, because I didn’t want to be out with it by others and let alone doctors just here to tell me what I had to do and wanted to become an expert for this condition and to be able to make the right choices for myself. 

 

Geoff Allix (05:21): 

So when did you come across the OMS program? 

 

Linda Boueke (05:25): 

Actually, I took a little detour. I first found Sven Becher, who’s a journalist in Germany, who has MS as well. And he wrote the book, which I had read in the spring of that year. And on the backside of the book [inaudible 00:05:45] there was a message, like he has MS and now he’s, yeah, getting along fine with it. And I wrote emails with him. So I tried to find out what he had done and what he had found out. And he was very helpful and sent me his, yeah, sort of script. And later on, I bought his book as well. And there were many hints to OMS. Because he has many, yeah, sort of similarities to OMS in his approach. 

 

And six weeks after my diagnosis, I read the OMS book obviously. And I changed lots of things. Yeah. I like the approach, do whatever it takes to stop the progression. And still I struggled because the quality of life you think you have in your life, you have to sort of find a way to, yeah, optimize your quality of life, even though you will change your diet and do a lot of for your health, you know that. 

 

Geoff Allix (06:55): 

Are you in an area of Germany where there’s very much dairy consumption? And I mean, honestly, I haven’t been to Hamburg. I’ve been to Munich. I’ve been to Berlin, but it does seem to be the German diet does seem to be quite heavily meat based, dairy based. Is that the case where you are, is it difficult to make a transition further? 

 

Linda Boueke (07:19): 

Yes, definitely. I had some help for my stomach, really, because in that year I had so many stomach problems before so when the diagnosis came, and I realized it was better for my stomach problems because it was for really like a chronic inflammation of the stomach at the time. And so I had already decided to cut out dairy a lot. Yeah, it was really hard in the beginning, I think. 

 

And I think the main problem is you never individually know, which sort of measures lead to which outcome. And you cannot know for sure if the lifestyle or medication choices you make are definitely the cause for your wellbeing or for possible relapses. And it’s a marathon. And so you have to sort of jump on the train someday to decide if you are going with the lifestyle choices or not. And you can never be sure if it’s this measure or that measure [inaudible 00:08:32] 

 

Geoff Allix (08:32): 

No, it’s like medications. If there was one medication that we could take and it would cure us and everyone took it and it would be fine, but there’s so many because they affect different people in different ways. And yeah, it’s a very varied condition. Isn’t it? 

 

Linda Boueke (08:46): 

I had read something about happiness from a German author and he talked about seven areas which can lead to more happiness or not. And I realized eating is not one of them. So that was sort of, yeah, a relaxing moment because I thought, well, if that’s what studies say, eating is not part of it, then it’s only really family and friends, which is a part of being happy, which makes it so difficult because you have to sort of yeah, communicate with your family, with friends when you change eating that much. And that’s what’s really hard in the beginning, but it’s not eating itself that’s causing so much trouble for your happiness. 

 

Geoff Allix (09:31): 

So going for a meal can make you happy. But the actual eating part, it’s the social part rather than the eating the food. That makes sense. 

 

Linda Boueke (09:38): 

Yeah, and what I found out is that I can be very happy with this diet, and I wouldn’t change it back really, even if they got a pill against MS, because I’m so happy with my new lifestyle at this time that really this struggle was life changing. [crosstalk 00:09:56] 

 

Geoff Allix (09:56): 

So was that the biggest challenge you had in adopting OMS? In other words, were there other parts of the program that were difficult to adopt? 

 

Linda Boueke (10:07): 

Yeah. I struggle a little with meditation really. I rigidly stick to it. I do my 30 minutes of meditation each and every day, but I must admit, even after seven years now, I’m not an expert. I realize that some days I’m getting there, I’m getting calmer. And I come to a state where I think my brain’s relaxing, and perhaps healing is possible or something, but many days I can’t, I think my brain is overactive. I always have these many thoughts and it’s just, yeah, I can’t. 

 

Geoff Allix (10:47): 

Yeah. I mean, I do know some people who like yoga instruction and things like that, and they can just do it without listening to any soundtrack. They just go, well, I just sit and meditate, but I still need to have some sort of guidance, but even though some of them actually have quite long periods of silence. And so I’m listening to nothing, but so why does, how does that work when actually I can’t sit here and just be here, I don’t know. 

 

So for me, I tell you sometimes I can kind of get it where I’m doing it without it being guided, but I would hope by now I could do that, but, yeah, I find it a lot easier to be listening to guided mindfulness sessions. There are so many available now, which is brilliant. So at least there’s that, yeah. 

 

Linda Boueke (11:34): 

I listen to guided meditation I made up myself because I read so many books about meditation that I thought I bring it all together with visualization and healing meditation, and breathing meditation that probably even there, I wanted too much and put it all in one tape. And so I listen to that every day and [crosstalk 00:11:56] come the way. 

 

Geoff Allix (11:59): 

And when did you start to see, or you were saying that it’s difficult to really say what’s caused changes, but did you see positive results, improvements in your condition after you adopted the OMS program? 

 

Linda Boueke (12:17): 

Well, yes, I can say that. I think, I mean, I had late relapses. I had one relapse in 2010 and the next one in 2014. So then in the beginning of 2015, I had one more, a really bad relapse. My right arm went numb, and I was getting really afraid because that’s a bad feeling, as you can imagine. But then it got better, and I only have a, yeah, left numb hand a bit, but it’s usually usable and so I’m very happy with that. But what was better then was the stomach, which was inflamed. And I have almost no problems with that nowadays. 

 

And I had some eczema and hay fever, which is part of an overreacting immune system as well. And I could really see that subsiding. So I haven’t had any problems with that anymore. So that’s part of seeing how the body gets less inflamed I think, that’s for me what’s the sign. 

 

Geoff Allix (13:33): 

Yeah. I think when you were saying that you’d carry on with the diet, even if they had a pill which cured MS. I think because there’s so many other things, I think it’s just healthy for our bodies. And certainly my neurologist said this, he said, “It’s going to reduce your risk of heart disease, reduce your risk of cancer, diabetes, or all these things.” And so actually, yeah, I agree. I think it’s just healthier to live eating a whole food-based diet. It is healthy. 

 

Linda Boueke (14:00): 

Yeah. People kept telling me you’re looking so very healthy with what you’re doing. So something must have changed really. And it’s a good feeling in the body. And my doctor, he says, “I’ve got the best cholesterol reading.” Cholesterol? 

 

Geoff Allix (14:18): 

Cholesterol, yeah. 

 

Linda Boueke (14:20): 

Cholesterol profiles [inaudible 00:14:21] it’s more patience. 

 

Geoff Allix (14:21): 

I get this all the time. I just had a load of tests, like some annual tests done last week. And they’re always saying, they say, “Oh, you’re really healthy.” I’m like, apart from the obvious reason that I’m here, I mean, clearly, I’m here because I have MS. I go, yeah. Well, apart from that, you’re really healthy. So yeah. All my blood pressure and all the tests, everything, so, oh yeah. So that’s good anyway, because you don’t want to have comorbidities. I mean, if we had diabetes and MS, that would obviously be more problematic. 

 

So as much as anything, I think it is healthier. And if they did cure MS, I agree I’d carry on as much with the program. So you are involved in the OMS community, and you are the ambassador of the OMS Circle in Hamburg. So could you tell us a bit about OMS Circles and your OMS Circle? 

 

Linda Boueke (15:13): 

Well, yes. I think it was in 2017 that the OMS Circle program was launched because OMS, the charity, wanted to sort of spread the word worldwide and sort of install a community where peer to peer support is possible. And when I read about that, it certainly hit me and I thought, well, I have to be part of that because I had visited a one-day seminar in [inaudible 00:15:45] in 2016 and was really enchanted by the community I met there, and I was really sad because in Germany nothing was happening in regard to OMS. 

 

And I was feeling really lonely at the time because I hardly knew people with MS and let alone people who followed OMS program and so I was craving to meet people who were on the same journey in a way. And I wanted to pay back somehow and yeah, help spread the word about what OMS has to offer and help people who want to be, yeah, helped. 

 

Geoff Allix (16:33): 

And how have you found the Circle with COVID restrictions? Has that continued? 

 

Linda Boueke (16:41): 

Yeah, before we had meetings here in real life every four to eight weeks. And when COVID started, obviously that wasn’t possible anymore and we changed to online meetings, which is, yeah, partly good thing because my Circle is quite large. As I was the first ambassador in Germany, people from all over the country sort of gathered in my Circle in the beginning. Now we’ve got, I think, 10 Circles in Germany and some still remain in my Circle. And so we can gather with people from many kilometers away online, which is fine, but it’s not the same as meeting in person. I’m really looking forward to being able to host an offline meeting these days. Yeah. 

 

Geoff Allix (17:41): 

Yeah. We have just started where we are. We had one, about a month ago we had our first sort of actual face to face meeting, and it was really nice. I mean, yeah, it’s nice talking to people, but actually there is something about being there physically and everyone they brought so much food. It was ridiculous. Because I was like can everyone bring something and then we’ll have a lunch. And everyone, I think, because it had been so long thought, right, we’re going to bring lots of food. And there was just a huge feast, and it was great because we could eat everything. And so they had really gone to town, and it was like amazing. So it was really nice to meet up. 

 

Anyway, you also conduct seminars about OMS principles in Germany to raise awareness about lifestyle changes for people with MS. So how is that? And why did you start doing that? 

 

Linda Boueke (18:32): 

Well, as I said, I was in marketing once and I’m probably not a shy person. So when I’m convinced of a cause, I naturally want to share that insight with others to give them the chance to benefit from the evidence and blueprint for good health that others have discovered. Isn’t that the point of human development and progress in a way? An idea spreading to change mindsets and realities and lives by interaction. That’s sort of, I like this evidence-based, down to earth approach of OMS. 

 

And I like that it doesn’t try to antagonize between natural medicine and sort of the academic medicine. And so I think this inclusive and a relatively easily applicable approach that emphasizes the self-management abilities of every single person with MS is so valuable that I felt I have to do whatever is possible for me to reach as many people with this message as possible. 

 

And obviously people are coming to my circle so I can inform them and help them as much as I can. But I sort of wanted to scale it a bit higher and reach more people who haven’t heard of it. And so I was able to, yeah, hold some seminars and webinars in the last year to inform the German community about the OMS program, which is not widely known. 

 

Geoff Allix (20:15): 

And there’s a German version of the OMS book, isn’t there? 

 

Linda Boueke (20:19): 

Yes. I think it appeared in 2019 or I’m not sure when really, but it was quite late sort of, and then you could go with this book to a neurologist and say, “Have you read this? Please read it. It’s important.” So I tried that sometimes. Yes. 

 

Geoff Allix (20:40): 

And one of your guiding principles is the concept of flows. This is completely new to me. So could you tell us about what flow is and what it means to you? 

 

Linda Boueke (20:51): 

Oh yeah. It was new to me as well. During recent years, I visited a course of complete vocal technique really to sort of improve my singing abilities a bit. And we had a seminar within that about flow. And I wondered what it was. And we met with a great teacher, Raby Lahood, who was really a singer and performer. And he’s very deep in this flow concept and research. And yeah, to put it briefly, flow is sort of, you can say it’s happiness, but you can also say it’s a nervous status, which is between boredom and overburdening. 

 

So it’s when you feel at ease, when you are doing things you like, when you forget time. Sort of really in the moment, not thinking, just doing what you do and being good at it. So that’s a concept which also some in a professional context, sometimes people like to talk about flow because they want their staff to be in flow as much as possible because they reach peak performance when they are. 

 

So when you don’t feel overburdened or stressed out and you’re not bored, you are in the perfect performance zone of your nervous system really. And when I found this concept, it was about singers and performing on stage without getting sort of too nervous to sing or without getting stuck in your lyrics or something. But it also applies to everyone, not only to singers, because when you get into this flow zone, in the actual nervous system, healing is possible and social interaction is possible. And it’s really, it’s sort of the basis is the polyvagal theory, which you can look up. It’s like, you’ve got the sympathetic nerves. I don’t know if it’s sympathetic- 

 

Geoff Allix (23:14): 

Yeah. Sympathetic nerves or similar. 

 

Linda Boueke (23:14): 

Yeah. And the parasympathetic nerves are its opposite. And the polyvagal theory has found another sort of part of the parasympathetic nerves, it’s like three parts. And only if the third part is effective, you are in flow and your system is in a good and balanced state. So what comes out for me is that I try to focus on things that bring me this sort of flow situation that I’m feeling at ease, that I’m feeling the time flow away like nothing. And that’s what happened when I sort of yeah, work with my arts. 

 

Geoff Allix (24:00): 

Yeah. So I think most people with their MS are aware that stress is not good. Because I think we are physically sensitive to stress. I think most people realize that they’re getting stressed, but you also said, boredom is the other thing. So actually, so if we are avoiding stress, but also we want to avoid boredom and we want to be in that middle zone. So we- 

 

Linda Boueke (24:21): 

That’s right. And I think I always struggled with meditation as well because I am easily bored by that. And so perhaps a different approach would be just sort of to meditate by doing something that really brings you in focus, that you enjoy so much, that you are in the here and now without thinking about anything else. So that might be a sort of meditation as well. 

 

Geoff Allix (24:51): 

Yeah. I mean, yeah this has come up with mindfulness experts and they say, that’s the difference between mindfulness and meditation. Meditation is actually meditating, but actually you can do so many things, you can go for a mindful walk, so you can go for a walk in the countryside and that can be a completely mindful activity. You don’t have to meditate if you find that it bothers you. And then that’s obviously in the right flow state, but why not go for walk? Why not go for a cycle ride as these things can be done mindfully? 

 

So then you are still, yeah, you can do everything. It can fit with everything. So talking a bit about how you got to learn about flow, brought up the sort of singing side of it. So could you tell us a bit about your creative passions and singing and dancing and what you got involved with there? 

 

Linda Boueke (25:40): 

Yeah. Well, I always enjoyed, yeah, singing, dancing, and painting. I couldn’t decide which most really, and yeah, after sort of getting over the shock of the diagnosis and finding my new way with the OMS program and sort of caring for my health, I decided to sing and dance and paint as much as possible. And try to start a second career really, to do it seriously, sort of to go on stage and present a solo program with a pianist and try to write songs. 

 

And now I started with a new band, and I have painted a lot last year because obviously going in stage in COVID times is not so really easy. I had my first show in 2019 and I had some bookings for 2020 and then it all stopped. But I have found a new pianist and the rehearsals with him were definitely a most welcome help against mental stress during the pandemic, because we were able to meet and to perfect the program and yeah, after the vaccination, I also started to do dancing again, as much as possible. And I’m almost looking forward to my next MRI to see if this flow has all solutions, but yeah, I would be happy to see that. At least the MRI in 2020 was stable, so better than nothing. Yeah. 

 

Geoff Allix (27:31): 

So Linda, thank you very much for being part of the Living Well with MS Coffee Break series and allowing the community to get to know you a bit better. But one last question before you go, and there’s a tradition that we like to ask Coffee Break guests. If you could tap into your experience with MS generally, or OMS specifically, for a piece of wisdom, particularly for people who are new to the program or new to MS, to help them adopt the OMS program, what would that advice be? 

 

Linda Boueke (28:04): 

Oh yeah. I’ve got a big table in the, no, what do you call that? I’ve got many of these sort of codes on my mind, which I try to remember when I’m getting low. And one of them I read online. I don’t know who this was. Stop that silly grieving. 

 

Geoff Allix (28:30): 

Okay. Yeah. 

 

Linda Boueke (28:32): 

That really hit me at the time because I was grieving a lot for my old life. And just to realize that grieving doesn’t help at all, you just have to look forward and try to see what you can find in the future. That helped me a lot because, yeah, it was like a slap in the face stopped that silly grieving. And I am really for that, whenever I get a feeling of despair, I have to try something new, start something new. And I think new beginnings, new projects, joys in life mean a new beginning. Always that’s a quote I like. So that would be my advice, just to get out of that stuck feeling when you feel like nothing is in the future that you want to see. 

 

Geoff Allix (29:27): 

Okay. Thank you very much for that. And thank you for joining us. 

 

Linda Boueke (29:30): 

Yeah. Thank you. 

 

Geoff Allix (29:31): 

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 [email protected]. We’d 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 a 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. 

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Linda's bio:

Linda is from Hamburg, Germany, and she was diagnosed with RRMS in 2014. She immediately changed her diet and after attending an Overcoming MS seminar in 2016, she started to adopt the Overcoming MS Program completely. Since 2017, she has served as an Ambassador for the Overcoming MS Circle in Hamburg, and she sometimes holds seminars in Germany to help inform others about Overcoming MS. In 2019, she has started a second career as a solo-singer and performer. Following her dreams has become easier because Overcoming MS has helped her regain strength and focus, so she is incredibly thankful to have found Overcoming MS so early. 

She spreads the word about the importance of lifestyle and the Overcoming MS Program to enable others to live a full and healthy life even with the diagnosis. Hope is a crucial thing to fight the mental challenges of such a diagnosis, and Overcoming MS provides evidence-based hope. She wishes for many others to find the strength in themselves to change their lives for the better by adopting the Overcoming MS lifestyle and to live a full and healthy life for many years.   

To prevent depression, which is common in people with MS, Linda finds it most important to listen to her inner voice. “Find out what you really want to do and with whom and try to get rid of energy-draining things and people in your life. I write a journal every few days, and I rigidly stick to the habits of at least 30 minutes of exercise (about 6 days a week) and daily meditation.” Linda loves her new eating habits though it was hard to change her diet at the beginning. Even if she got rid of MS today, she would not go back to the way she used to eat.   

Linda encountered the concept of flow during her singing studies. Stimulating the ventral vagus nerve helps to counteract the stress response of the body and may enable you to reach peak performance and allow your body to heal. For her life, that means that she tries to do what she love as much as possible – sing, dance, meet easygoing people, paint, and write. When you don’t feel time passing, and you are neither bored nor stressed, then you are probably enjoying flow.