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S2E16 Coffee Break with community member Johanna Lahr

Listen to S2E16: Coffee Break with community member Johanna Lahr

Welcome to our sixth installment of Living Well with MS Coffee Break, where we welcome Johanna Lahr as our guest! As you now know, we decided to do something a little different in expanding the range of content we produce here at Living Well with MS. To honor the community that forms the beating heart of Overcoming MS, this special series called Coffee Break features short interviews with members of the OMS community talking about their personal journeys adopting and staying on the OMS 7 Step Program, the challenges they encountered and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these intermezzos between our regular episodes, and as always, your comments and suggestions are always welcome by emailing [email protected]

If you post something concerning OMS and COVID-19, especially if it’s a bit of good news during this rough patch, don’t forget to use the hashtag #positivelyOMS.

Transcript

Episode transcript

Geoff Allix  00:02 

Welcome to Living Well with MS Coffee Break. I’m your host, Geoff Allix. We decided to do something a little different in expanding the range of content we produce here at Living Well with MS. Since our community forms the beating heart of Overcoming MS, we are commencing this special series called Coffee Break, which features short interviews with members of the OMS community, talking about their personal journeys, adopting and staying on the OMS seven step recovery program, the challenges they encountered, and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these brief chats between our regular episodes. And as always, your comments and suggestions are welcome by emailing [email protected]. That’s [email protected]. And don’t forget, if you enjoy these and other Living Well with MS podcast episodes, please leave a review on Apple podcasts or your favorite podcast listening platform. This episode of The Living Well with MS. Coffee Break is with Johanna Lahr. Johanna is not only the OMS ambassador in Berlin, but has been running a Facebook support group since 2013, which now counts more than 4000 members. So welcome, Johanna. And can you tell us a little bit about yourself, your family, your life, where you live, and anything about yourself that you’d like to share? 

 
 

Johanna Lahr  01:28 

Thank you. I’m Johanna Lahr. I’m married. I have a daughter. Big one already. She will be 20 years old end of the year. I was born in Venezuela. My parents come from Chile and I’m living in Berlin since the last 20 years almost. What else can I tell you? I still work full time in a company in the medical field. I have been working there for the last 18 years. I have several hobbies, I’m a passionate gardener. I love to play golf and I love to travel, especially to warm places. 

 
 

Geoff Allix  02:16 

And when were you diagnosed with MS and how long have you been following the Overcoming MS seven step recovery program? 

 
 

Johanna Lahr  02:24 

Yeah, I have been living with MS since 2008, which came rather unexpected. In 2006, so two years before I got sick. And in the end, I was diagnosed with viral meningitis. And when it was very bad as you can expect, but at some point I got better. And at first glance, it looked everything like it was okay that I came back to normal and there were no serious effects from this disease. However, within the next two years, I started to develop a series of autoimmune disorders. And MS was one of them. There is no history of autoimmune disease in my family actually. But due to my work, at the time I was working in the biotech department of my company, I knew a lot about MS. I got very interested in this disease because of how multifaceted that it is. And this got my attention, the kinds of symptoms that I started to feel. So in the end in 2008, I got diagnosed and the next two years were actually very quiet from the MS perspective. I had this force relapse but didn’t have any really serious effects from it. But it was in 2010 when I had an optical neuritis and this time was really the trigger of many other strong symptoms I was plagued with. I think what many people with MS knows, very painful symptoms, fatigue, which I found really so debilitating. I had difficulties to coordinate really very simple functions like to swallow and to breathe at the same or not really at the same time. I don’t know in the right sequence so that you could do it without trying to kill yourself. I had bladder problems I had really a lot of problems and it was, I think four months later after this very strong relapse, that I got really, really worse I had, again a relapse on my eyes. So on my left, I was attacked again, and I lost 80% of my sight. And three months later, after that, I left already the hospital, I had a relapse on my right eye. And this one got really bad, too. And just few months later, I had again on my left, and to close this wonderful year, I had a relapse that paralyzed the left side of my body, leaving me in the end with a very weak left leg. So it was really a very, very shocking start with MS. And still, I was struggling with these other diseases that I had. So psoriasis and some other respiratory problems that I had. It was actually a very, very scary time. And I was on medication, but I don’t, I had a feeling there has to be more that I had to do. And since I’m more like a solution oriented person, I started to dig, so what kind of thing I could do more to improve my situation. And I started to read the things that I had available. So we have, from my job I have access to many online studies on MS. But also other studies from other companies and institutions. And actually, it started to appear like a very clear picture, in which direction I would go. And I realized I needed to do like a lot of big changes in my life. I was I have to confess, workaholic, ideally, a very healthy type of lifestyle. And I started with a vegan diet, and I started supplementing with vitamin D. But it was I would say a few months later, I can recall how long in between that I visited research institution here. And there I met someone who was working with me in the past. And it was this doctor who told me, he was just passing by really, on the whole of the of the hospital, told me check out the work of Jelinek in Australia. So I just wrote the name because then it wasn’t so familiar to me, and did exactly that. I got home, I started to read what was available on the website, from the OMS charity. And yeah, for me, everything makes so much sense. And I was very gratified that it was really supported not only from the studies that Dr. Jelinek was using in his books, and in his research, but also on the things that I read previously. So I felt like very encouraged to follow this way. And it was like one minute decision, I decided this will be my way, I ordered the book, but it started immediately with following the OMS, first, of course, like many of us with diet, in my case, I started a 100% plant based diet. And not long after after that I got some actually two more diagnosis from some other autoimmune diseases. But it was OMS actually, that has helped me, not only for my MS condition, but to all others. And today, I would say almost, if I count correctly, nine years later I am living without any medication for any of my diseases, control 100% with OMS lifestyle and fasting. 

 
 

Geoff Allix  09:40 

So it’s more than just an MS treatment, it’s actually helping you for your whole health. 

 
 

Johanna Lahr  09:51 

Definitely. That’s why I really recommend so much for anyone, actually anyone who suffers from an autoimmune disease of inflammatory source that follows a program like this, if it’s not 100% OMS, it has to be following at least the cornerstones of this program, because I had like, a very aggressive start of every one of my diseases. And some of them, I brought them completely to a stop. 

 
 

Geoff Allix  10:30 

And so, apart from that its helped you with numerous conditions, what’s your favorite thing about the program? And what do you feel has made the biggest positive impact? 

 
 

Johanna Lahr  10:41 

There’s so much I could say about the program,that I have benefited from that I fear, I might sound like a raving lunatic. I know we are talking about MS. But I have to give you an account of these other diseases. The first things that improve for me was psoriasis. And psoriasis is not only painful, it’s so visible. So, it has this, this component of, I don’t know maybe a little bit even of shame that you look. So I don’t know, like you don’t care about yourself, if people don’t know about it, right. And I have to say, so the psoriasis disappeared within the year. And until today, it was really completely gone. I had like an asthma induced reaction from my immune system. And this was very debilitating, because I was, every single year since 2006, in the hospital, because I had pneumonia. And my pneumonia stopped in 2014. And I never had it again. I never needed to go to the hospital, I don’t need any kind of medication for this, nothing at all. And I think something as elementary as this. Its like so incredible, that you can regain something like that. After you have been, I don’t know, having this ordeal for so many years. And, well I could tell you about dermatology, arthritis, and so on. But now regarding to MS. The first things that went, or improved, were my sensory symptoms, I had burning on my skin very strongly, this was extremely painful. I was really suffering of MS hug, very badly. They were all gone really gone, I would say these kinds of, let’s say soft symptoms went away within the first 18 months. And the most impressive was the improvement of my eyes. This took several years. And even though my doctors actually gave it up, because normally your body would not continue regenerating on a cellular level after 24 months. Normally, you cannot really expect much after that. And my eyes were still very bad. But I didn’t lose hope, I followed my program and did my fasting. And today my eyes are actually almost normal. I don’t have sensitivity of light, I can see very well, I can read everything. Sometimes I need things a little bit bigger than everybody else. But other than this, I can see very well. For me, I think this was also something that impressed me a lot. So the capacity, or the potential that is behind these kind of lifestyle changes, that you can trigger your body to start or continue regenerating parts where you normally think would have given up. 

  

Geoff Allix  14:37 

For me, my eyesight as well. I had double vision for a long time and that was completely resolved. But then I still had a blurriness of vision that I mentioned to an optician and he said that’s nothing to do with MS. You’re 49 years old. So you think everything is MS. But sometimes you have to accept that actually, you get to a certain age and you need reading glasses. 

 
 

Johanna Lahr  15:10 

You know, one of my doctors said exactly the same to me. I told him oh, maybe something is happening with me, do you think it is MS? And she looked at me really straight in the eye. And she told me, well, you’re really not the youngest person. And then she told me really don’t worry, this is just you are, you’re not so young anymore. 

  

Geoff Allix  15:35 

The same if I have a bad back. 

 
 Johanna Lahr  15:37 

So, it was actually rough. And under normal conditions, you would really be shocked. But we are happy about it. If you hear something like this. 

  

Geoff Allix  15:47 

And so you’ve had huge successes with the program, but what’s been your greatest challenge in adopting the OMS program? 

 
 Johanna Lahr  15:55 

Yes, so at first, it was diet, definitely. I told you before, I started my vegan diet. But I was still doing some exceptions. I was eating Parmesan cheese, just sometimes, but anyway, and I was eating Italian ice cream that I found so delicious. 

 
 Geoff Allix  16:20 

And you live in Berlin, which is the home of sausages. I think, I shouldn’t say that. Because I’m from England. Yeah, well, you have a lot of sausages. 

  

Johanna Lahr  16:30 

That’s really, that’s really true. Hundreds and hundreds. It was a hard step. Like to, not to allow any kind of exceptions. So, I just, you know, started like to train myself, mentally, I repeated to myself, every time I felt the urge to eat some some kind of, let’s say bad food, no food tastes better than my ability to see and work on my own. And this was so sobering, every time, every time. This became actually my life motto until today. And I think with time this became better, you learn to cook different, you learn other foods that you maybe didn’t eat before. And at some point, I have to say, since years, I don’t miss anything, I do not even miss my beloved Italian ice cream. So from this point of view, this was like a first difficulty. But that could be overcome really, very efficiently. And I think later on, and sometimes even today, still a difficult thing has been the mental aspect. So this necessity to let go of things. So to think that you can, for instance, physically master something, let’s say some level of yoga, and then you get thrown back because I don’t know something is debilitating me or if there is any, any other thing. So this is sometimes difficult. I don’t try to put too much weight on it. But if you ask me today, nine years later, this would be something that I wouldn’t say maybe struggle, but something that I every time have to work on. It doesn’t come easy all the time to let things go. 

  

Geoff Allix  18:50 

Okay, and two steps forwar and one step back is okay, you’re still going forwards? 

  

Johanna Lahr  18:55 

Exactly. It goes much slower. Exactly. And sometimes it’s not only that,  sometimes there are things that you just can’t simply do anymore. I was practicing figure skating. And when my daughter was old enough, she started too, and this was something that I was really enjoying, we were doing it, the three of us and I had to give up this completely. And so there was no alternative to it. And so these kinds of things. These are minor things in the big picture right. So what I do is I try to focus on the positive, on the things that I can do. And my overall goal right, to be able to work, to be able to take care of the things I like, my garden, I like to travel and to enjoy with my family. In the capacity that I can, if they want to do let’s say ice skating then I come along, I put on the pictures, and I enjoy it anyway. And yeah, that’s what I do. 

 
 Geoff Allix  20:07 

Um, you’re very active in the OMS community, and you’re the ambassador for the OMS circle in Berlin. So could you tell us a bit about OMS circles? And how that has changed your journey with MS? 

  

Johanna Lahr  20:25 

Yes, I created the first circle in Berlin, actually the only one in my city in 2018. And our group is rather small, we are above 20 people. And it was actually a very different experience from what I had before, where I had mostly actually, almost exclusively online contact with other OMSers. Right. So this was already like an eye-opening thing, like to see it with people that are doing the same that you do. They’re having, like, maybe the same questions that you had, maybe not at this point, but like, when I was at the beginning. So from this point of view, it has been a very, very nice, and for me, definitely very gratifying experience. And from the group dynamic point of view, I think, where we know each other already, since a little while, so there is also friendship. So it’s, it’s really nice, we meet where before there is like there is like in many, many things a time before and after Corona. So before we were meeting, every three months, and then we try to meet every two months, then came corona inbetween, and there was a little break. And since then, we decided to use some tools to organize meetings online. And this has worked actually very well. So we usually have a topic of conversation that we want to focus on. And we normally kickoff the meeting, let’s say with this, an element of OMS, or some adjacent topics, like for example, our last was the effects of high intake of salt and MS. So things that are, let’s say OMS, directly or OMS friendly topics. And before we were enjoying nice food together, and now we just, well, we have the possibility to see each other on a screen. And it has have also the positive effect that our group has also grown. So over the border of Berlin. So we have a couple of people that are coming from four other cities. And we decided that we will keep online meetings, not only of course, but after everything normalised, that we will keep it so that we could include these people in our community, at least until they have their own circles.  

 
 

Geoff Allix  23:22 

So you mentioned that online approach. And you also run a support community on Facebook, which has over 4000 members. So could you tell us a bit about that, and the impact that you feel this group has had in helping people with MS, both in Germany and worldwide? 

 
 

Johanna Lahr  23:42 

Well, after I got better, I started to reflect on my luck. My luck by finding OMS especially in Germany, where the program wasn’t yet so popular. And I felt quite grateful and fortunate actually, and decided that I wanted to help others, to learn about the program and to get into it. And yeah, I decided to create a community and I wanted this community also to be, let’s say different from the standard communities that are so gloom and I don’t know, people are just talking about the things that are missing or things, but things that are happening. I wanted our focus to be different. So the same energy that I got from the program, of this possibility of progress and the possibility, the chances, I wanted in this community and with this focus. I joined a couple of other people and we started this Facebook group. 

  

Geoff Allix  25:01 

So could you tell us the name of the Facebook group? 

 
 Johanna Lahr  25:04 

Yes, our group is called Overcoming MS Lifestyle Support. And it has actually, well we have grown to over 4000 people, we are a very active group. So we help each other, we are very restrictive, I have to say, have been also topic of conversation with people from the OMS charity. So we focus exclusively on OMS topics and OMS friendly topics. So we don’t, I don’t give room in this community, let’s say to discuss other methods, or if this is better, if this is what this is, this is not what we want. And this is not what we are about, we want to help people to start with a program and to stay in the program. And everything that that entails, like, helped me out to learn a new, I don’t know, maybe meditation program, or helping out to make this recipe OMS friendly. So every kind of topic that we need to stay in the program to stay true to the program is what our group is about. And over the years, we have developed into really such a source of wisdom, I would almost say. We support each other. And we are really, I think able to help everyone in the community. It’s really a very nice, very nice group, I get a lot from this group. So from this, to see how people get better, and how people change from this initial fear that I think we all have, after such a diagnosis, to having like a purpose initially for your own health. And, and then, yes to show also the achievements that you have gained along the way. So it has been, I think, a very positive experience for me. Definitely. And I think and hope for these 4000 people too. 

  

Geoff Allix  27:33 

And is it a public group? 

 
 Johanna Lahr  27:35 

No, it’s not a public group. This is a closed group, so you can find us, but if you aren’t a member, you are not able to read anything about it. 

 
 

Geoff Allix  27:46 

So anything anyone posts on there is private. Because there’s medical things and some of the symptoms that we all have, they can be embarrassing. 

 
 Johanna Lahr  27:57 

It’s very personal. Of course, this is a vote of trust that you give, the moment that you open up to a group like this, but I have to say over the years, now we have been running the group seven years and we have never had any kind of problem and so we trust each other, and we are really a very nice community. So nobody has ever had a problem with this. 

  

Geoff Allix  28:26 

You mentioned Coronavirus before and how that’s affected your circle. So this is in the midst of the Coronavirus pandemic, if anyone’s listening to this in the future. So it’s different in different countries. So certainly Germany seem to have done a very good job of keeping the cases and deaths very low, certainly compared to the UK, compared to the USA. Some other countries which have done maybe less good a job but how has Coronavirus, COVID-19 affected your daily healthy habits and you’re following the OMS program? 

  

Johanna Lahr  29:14 

Yes, it has been a change, for once we are all here in the house 24/7. So this already changes your  personnel routine, right. We are all working from home. My daughter having her lessons from home. And I think, what has been a real change has been my, first my training habits, so this was in the middle, well not really in the middle of winter, but it was still winter here. The beginning of March and I think I had the first two weeks of lockdown, I didn’t really train or anything. I was like more busy with taking care of the logistics of being locked in the house. So totally disrupted my training routine. Definitely. And after that, even though it was only two weeks, it took me really time like to get into something. I remember my group was a big help, I commented this exactly that I wasn’t the only one. And we started to encourage each other. So let’s, let’s do this yoga class let’s, let’s do this. I have a member who is, I think I can say, is the personal trainer and she works with weights. So she was offering a class for us for free of course, every week that we could follow online. So with this I got started again. At least until the weather was nicer, I could just go out for a walk at least or something. So this part was definitely a big disruption of my routine. And there is also something that I still have and that is the food. I still have, of course my 100% OMS friendly foods, but they have become I would even say very, very tough because I have to cook so much. So everybody is at home and we all eat different. So we are, we have a household with one vegan, one vegetarian and one omnivore. And it has been difficult because during this Corona time, my daughter and husband had to go through surgery on the legs. So they could not walk until recently, and my daughter not even completely so they couldn’t really help at all. So it has been very testing. At least I was left with beans, soups, beans, soups, rice with tofu, like very, very boring. 

 
 Geoff Allix  32:30 

So both your husband and daughter had surgery and Coronavirus. All at the same time. 

  

Johanna Lahr  32:38 

Well they didn’t have Corona. I mean, sorry, the time yeah,  it was actually very challenging. Because, of course, because of the crisis. I could not even visit them in the hospital. I had to call to know how their surgeries went. And I could bring things and they would receive it in the front of the hospital. So one nurse would come and receive the things from me, and she would take them to them. So it was yeah, it was actually I think, under normal circumstances, a very stressful time. But looking back, I was really never never stressed. Of course, I was afraid when I knew there was an accident, and they needed surgery. But I was all in all, and all along in a very positive mindset. And I think this is thanks to meditation. Definitely, I think otherwise, I would have freaked out most likely. Yeah, definitely. Actually. 

 
 

Geoff Allix  33:53 

Yeah, it would be normal in that situation. 

  

Johanna Lahr  33:55 

Yes. But I was convinced everything was going to be okay. And they will come home soon. This will be more work. And this was actually until today. But yeah, I wasn’t really stressed. And I think I had a minimum of fear. I’m very grateful. 

  

Geoff Allix  34:16 

Now they’re home, but you have to cook three different meals. 

  

Johanna Lahr  34:20 

This is the thing. So all the cooking has been really stressful. More stressful than the accident. Yeah. 

 
 

Geoff Allix  34:30 

And do you have any other tips or tricks that you could share with our audience that could help them on their OMS journeys? 

 
 Johanna Lahr  34:39 

Yes, I would say so. If you just learned about the program and you’re thinking this could be an option for me. I would say just, it’s really this program, it’s not only for MS. This is so holistic, and it will help everyone, everyone in your household and so it is really like the first step to a better health, a better improvement of your MS symptoms, but improvement in general of your health. So, start with the program, how do you do it is really of no relevance, you could start step by step, taking one thing at a time, or just go cold turkey, however you want, what’s important is that you find a sustainable way for you. And the sustainable way is, it’s something very personal, right. So that’s why this has been my experience is really of no relevance, there is no one single method, how to do it. And join our support community, this is so important check, if you have the possibility to join a Circle in the place where you’re living, and if it’s not, then join an online community like my group or on the forum of the OMS website. This is very important. 

  

Geoff Allix  36:19 

And you mentioned fasting earlier. Do you think that’s had a positive benefit to your MS? 

 
 Johanna Lahr  36:26 

Yes, definitely. And this is actually, not even particular, let’s say a subjective opinion, it was also measured. In 2013 I signed in as a subject in a study, in this study they wanted to test the effect of fasting for MS patients and welI, I started it, this was therapeutic modified fasting so not 100% water fasting, you would add some little things and this would go along in total for 11 days. And of course before the fasting and after the fasting, they made like a full check of your coordination capabilities, how much you could see the quality of the measuring of your nerves, really all possible things, whatever you can imagine, this was tested before and after. And already of course being at home several days into the fasting course I already started to feel improvements, especially in my eyes. And when I came back to the clinic to do the second round of tests, so after these 11 days, I got it confirmed, so I had improvements in everything what I was feeling, so the strength of my leg, so this weak leg that I had. How much better I could see, I could read everything they put in front of me, even the tiny tiny letters and I think there was a very long time that I couldn’t see anything on this you know this typical screen of technologies and yeah I got so much better I was also saw so impressed about how, in such a short time, you can gain so much benefits that I have been doing this ever since. So I did it two times with the hospital and since, I don’t know, end of 2014 maybe I continue doing it alone, until last week. I actually finished it last Tuesday, my fasting course and of course now I cannot tell you exactly what is happening because I’m not measuring inflammation markers or any MRI or anything but fact is that I haven’t had any relapse since many years. I don’t have any MS activity in my brain, neither in my spine. I had some lesions that are much smaller and some that even completely disappear after several years of being very big and very visible in my scans. So I would say that the combination of OMS lifestyle and fasting has been fantastic for me. It has given me a level of life quality that I could never even hoped for. So not even the most positive and optimistic of my doctors could ever imagine that I would be where I am today. 

  

Geoff Allix  40:30 

And we should probably say to get medical advice before fasting. It’s not suitable for absolutely everyone and you should just check out yes, definitely nothing medically. Yes, definitely. Thank you very much for that. And I’d like to thank you very much for joining the Overcoming MS. Living well with MS. podcast. Thank you, Johanna 

 

Johanna Lahr  40:53 

Thank you for the invitation. 

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Johanna's bio:

My name is Johanna Lahr, I live in Berlin, I am married, and I have a daughter. I work as a Senior Product Data Manager in a company in the medical field. I have been living with MS since 2008, with MS being one in a long string of autoimmune diseases. I have been following the OMS program for about 9 years. Today, I look back and even though my journey was very bumpy and at times seemed to be hopeless, I am grateful for the hope the OMS program has given me. It gave me not only the strength and confidence to believe that things could get better even though nobody around me believed it, but more importantly, the OMS program has given me all the tools I need to succeed, not just with MS but with all the other autoimmune conditions I’m contending.

I am actively engaged in several support initiatives. For almost 7 years, I’ve been involved with Overcoming MS Lifestyle Support, a Facebook group dedicated to supporting people with MS following the OMS program. In 2018, I created the first OMS Circle in my city and at work, together with another colleague, I created an employee-driven initiative that strives to build an inclusive workplace and enable access and career opportunities for people with disabilities. These groups not only became a way for me to help others, they have given me the opportunity to meet the most amazing and inspiring people I know.