Living Well with Multiple Sclerosis
Welcome to the Overcoming MS | Living Well with MS podcast. In each episode, your host Geoff Allix will explore a different aspect of the OMS 7-Step Recovery Program in greater depth. New episodes will be published approximately once per month, and will feature interviews with scientists, fitness specialists, diet experts, stress reduction professionals and OMSers themselves. The podcast will also feature inspirational, real-life stories from people with multiple sclerosis about the daily challenges and small victories of successful lifestyle modification.
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Coffee Break #31 with Nigel Bartram | S4E51 bonus
05/16/2022
Coffee Break #31 with Nigel Bartram | S4E51 bonus
Welcome to Living Well with MS Coffee Break #31, where we are pleased to welcome Nigel Bartram 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 . Nigel is a special member of our community – a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We’ll dive more into that shortly, plus we have a very special surprise for you, so stay tuned. We hope you enjoy this episode’s conversation with Nigel, coming to you straight from Paris, France. Nigel’s Bio (in his own words): I was born in London but moved around the UK as a child. After a 1st degree in History and then an MBA, my career landed mostly in marketing in the financial sector. In my last job in the UK, as Sales & Marketing Director of a retail stockbroker, following spectacular growth from start-up, I helped lead the company through a heavily oversubscribed IPO onto the London Stock Exchange. Aged 43 I upped sticks to follow Caroline, my wife, in what was planned to be a temporary career move for her to France, along with our two young children, and my rubbish French. I became a house husband, looking after the kids, improving my ‘null’ French, and helping build a house in our Paris suburb (with stunning views towards the city. Temporary morphed into permanent. A joyful adventure, imbibing the beauty of our surrounds and French gastronomy became altogether more serious. Settling in France permanently meant I had to find a job. I retrained as a teacher of English, set up a language school, and taught part-time as a university Associate Professor. All that was a breeze compared to a body which inexplicably started to go haywire. Overnight, out of nowhere, I lost 90% of the hearing in one ear (which happily came back of its own accord, more or less). In my long-gone student holidays, I worked as a tree surgeon, so heights held no fear for me. So how come I found myself sick with panic driving very slowly along the magnificent Gorge du Verdun with Caroline and the kids on board in 2003? I was petrified by the sheer drop into the ravine, something I’d have relished the challenge of scaling up in yesteryear. I suffered in silence of course. I wasn’t diagnosed with MS for another six years, time enough for my ‘flappy foot’ and drunken sailor swagger to become my trademark walk. Bit by bit, bucket loads of other symptoms intruded into my daily life. Time enough also for MS to land me in plenty of challenging situations, some of which, even though they may have been difficult at the time, were clearly comic book stuff. The idea of the book crystalised a few years later when I was on an OMS retreat. To my great surprise and delight, I realised that MS hadn’t robbed any of us MS suffers of our senses of humour. Indeed, it had given us a rich new vein of experiences to mine and chortle over, so important when up to half of people with MS experience depression at some point. The deal was sealed when the retreat facilitators, Dr Keryn Taylor and Dr Craig Hassed, a world-renowned expert on mindfulness, warmly embraced the idea of such a book for the morale boost it would bring to people with MS, and those close to them, by presenting an altogether lighter side of the condition. Off I went to write down a few of my own stories and harvest those of other people with MS. What a job the latter proved to be! Questions: Nigel, 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. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? You mention in one of the 3 key things to know about you, which can be found in the show notes, that OMS may have saved your life. That’s powerful. Can you speak a bit about that? Let’s shift gears a little bit and talk about a very exciting project you’ve just completed and are about to launch. You’ve written a book called ‘MS A Funny Thing’, which is an illustrated collection of humorous essays you’ve written through the years about your experience with MS. Can you tell us a bit about it? How has humor helped you deal with the challenges of MS? Another special thing about this book is that you’ve dedicated all the proceeds to several nominated MS charities. What compelled you to model the project this way? This book is illustrated, and I understand there is an interesting backstory to how you came to collaborate with the illustrator. Can you share a little about that? Since we have whet everyone’s appetite about this book, we have a very special treat for you. Nigel is going to read one of his essays from the book! This is very exciting, Nigel. It’s the first author reading on this podcast. Please take it away and perhaps share its title and a little context on the piece you’re going to read for the next few minutes. Wow, that was fantastic. Thanks so much, Nigel. How can people get their hands on your book? Before we ask Nigel one final question, I want to remind our listeners that May is Mindfulness and Meditation month at OMS. To mark that, tune into a special webinar on May 17, featuring a live meditation session with Phil Startin. If you’re listening to this episode after May 17, don’t worry, you can view a replay of this or any of our webinars at any time. Details on registering for this free webinar, as well as a link to replays of past webinars, can be found in our show notes. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day. Nigel, 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Praise for Nigel’s Book: “There are three things I'd like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you! Second, all proceeds go to worthy MS charities. Win-win! Third… now what was that third thing? I need to take Nigel's sage advice and stop nominating how many points I am about to make, don't I?” Professor George Jelinek MD, Honorary Professor, Melbourne School of Population and Global Health and Founder of Overcoming Multiple Sclerosis Three Interesting Facts About Nigel (in his own words): I’m physically pretty handicapped, with an EDSS of 7, but still live a fulfilled life. I haven’t given up hope of getting some lost physical function back and am working hard to do that and making some early progress. I’m certain but can’t prove that the OMS regime saved my life, getting me through a flirtation with the grim reaper three years ago. Until fairly recently, we who’ve continued deteriorate physically despite following the programme religiously, have been a real OMS Cinderella, as though somehow, we're an aberration and should be ignored. This view is shared by quite a lot of my OMS friends who have similarly failed to experience any recovery. We nonetheless continue to adhere to the programme believing it to be a force for good even if it doesn't do what it says on the tin for us. Nigel’s Links: Nigel’s book MS A Funny Thing is officially released on May 30 (World MS Day), but you can purchase early Check out the Nigel has written on the Overcoming MS website Check out Nigel’s , where you can get a taste of his writings Register for the OMS meditation webinar with live meditation session, taking place on May 17; if you’ve missed the live webinar, catch the replay Coming up on our next episode: On the next episode of Living Well with MS, premiering May 25, 2022, meet , Tai Chi instructor, storyteller, and author of the new book, . Learn how Arlene deploys the ancient practice of Tai Chi to help manage chronic pain associated with MS. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 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 . S4E51c Transcript Coffee Break #31 with Nigel Bartram 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 . If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to 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 #31, where we're pleased to welcome Nigel Bartram 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 me 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 welcome by emailing . That's . Nigel is a special member of our community, a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We'll dive more into that shortly; plus, we have a very special surprise for you, so stay tuned. We hope you enjoy this episode's conversation with Nigel, coming to you straight from Paris, France. So Nigel, welcome to Living Well with MS Coffee Break. We're very pleased to have you on the program, and the purpose of this series is to get to know a bit better the diverse members of our community from around the world, and today you're joining us from Paris, France. So could you tell us a little bit about your day-to-day life? Nigel Bartram (02:27): Yeah, thanks very much for having me. It's a great pleasure. First of all, a little correction. It's not your fault, but we actually don't live in the center of Paris, or actually in Paris itself, but in a very leafy suburb, with a forest on one side and the river Seine, you can see the barges going past from our bed in the morning, we're about 20 kilometers outside the center of Paris. Geoff Allix (02:51): That actually makes it sound more idyllic than living in Paris now. Nigel Bartram (02:55): Well, it is. And I think in common with what's happened in the UK and many countries post-COVID, people are beating a path out of big towns and cities to go to places where there are spaces which during confinement, as they called it here, are a bit more pleasurable than being cooped up in a rabbit hutch, which is many people's place in Paris. But yeah, so my everyday life, it's I think largely unexciting. I'm fairly handicapped, so I don't get around very much, but I spend quite a lot of time writing on my computer and doing blogs for OMS and for other MS charities, and it's one of the reasons I had time to create the book. One of the great delights of living here is the gastronomy, which is a reason why we stayed and not went back. So lots of delicious meals, all conforming to the OMS guidelines, or as we called it on my retreat, legal food. And incidentally it's easier, I think, in the UK to eat out than it is here. People, with the exception where they get to know you very well, look incomprehensibly at you when you say, "Well, I can't have this, I can't have that, can't have that," and the rest of it. So they give you a plate of mushy green beans or something quite often. I exaggerate, but anyway. Geoff Allix (04:34): No, I've been to France a number of times since following OMS diet, and I would say it's one of the more challenging places I've been to. We did eat a fair amount of pizza, because anywhere that does freshly made pizza, it's fine. Have pizza without cheese. But yes- Nigel Bartram (04:56): I think that one of the saving graces actually is fish, because the French eat far, far more fish and seafood than in places in the UK. So even in a brasserie, you'll find fish on the menu, and they'll deign to not fry it or whatever, then you're okay. Geoff Allix (05:19): And so when were you diagnosed with MS, and could you tell us a bit about that diagnosis and how that went? Nigel Bartram (05:23): Yeah, I was diagnosed in 2009, but the first symptoms started appearing in 2003. And the reason for the delay was, I guess, twofold in the diagnosis. Firstly, that my GP, while I wouldn't expect him to have been able to diagnose MS, really ignored things that were happening to me, and just sent me for more and more physio, which of course did nothing at all. At the time, one of the big symptoms was what I call the floppy foot, drop foot. And so that was one cause of the delay. The other was that courtesy of SNCF, the French train company, I had a big accident so I was laid up for over a year and ended up suing the rail company. So that totally disrupted life, including getting on the trail of whatever it was that was causing the problem. So I was diagnosed in 2009, as I said. Immediately after diagnosis, I had to go back to the UK for a week and left my wife, and the neurologist sent the results through. And in French, MS or multiple sclerosis is called sclérose en plaques, SEP they call it, for MS. And my wife is really, really bilingual, but you can only ever be totally bilingual, or you can only be bilingual to the extent you've lived in the two languages through the same life experiences. So of course, she's never had any cause to know what SEP or MS in French was, so she immediately Googled and was appalled to find out what it was that was wrong with me. And I think it's a fairly common phenomenon that it's often tougher for the partner, for the wife or for whoever it is that's the bystander in this, than it is for the person themselves. Because I mean, we're helpless to some degree, although if you haven't got primary progressive MS then there are meds now available. They just haven't the faintest clue. And for me, it was actually a welcome relief, because I'd had this bag full of things happening over the preceding six years and I now had an explanation for it. That wasn't good news, obviously, but at least I had some rationale to explain what had been happening to me. Geoff Allix (08:12): That's true. And for me personally it was like, I haven't got a tumor in my brain, or something. You start thinking, "What else could it be? It's something going on neurologically." And so it could have been worse, there is that. Nigel Bartram (08:28): Yeah. Well, I think your imagination is better than mine. I didn't even think... What on Earth is causing the incontinence, whatever's causing my foot to drop and me trip up everywhere. Geoff Allix (08:43): And when did you come across OMS, and how did that go? Nigel Bartram (08:49): Yes, I came across OMS courtesy of... I don't know if you know the magazine New Pathways. Geoff Allix (08:54): Mm-hmm. Nigel Bartram (08:57): I can't remember how this happened, but anyway, I was in contact with the editor of New Pathways, and he told me about an event which was taking place in Brighton, where [inaudible 00:09:11] and Craig Hassed was there as well and was giving a conference in the Amex center there. So I went along, that was in 2014, and I absolutely bought what I was hearing. And I was nowhere near on the OMS program, but I found over the course of the preceding years that I probably did the shopping most of all, more than my wife. And I found I'd gone off red meat almost totally. And so the family are complaining, "Why are you giving us all this chicken?" None of them liked fish, so I didn't stick my neck out that far, but the things my body was telling me that it no longer wanted. So actually the food side of it really didn't give me a big, big problem, because I was mentally and physiologically unconsciously heading that way in any case. So that's how I came across OMS, and then the following year I was lucky enough to go on a retreat, a weeklong retreat in Ammerdown. So that's my OMS story. Geoff Allix (10:25): And you mentioned in one of the three things to know about you in the show notes that OMS may have saved your life. So that's quite a powerful statement, so could you tell us about that? Nigel Bartram (10:43): Well, a powerful statement made by a non-medic, non-scientist. You have to take it with the caveat. Yeah, it was coming up on three years ago, I was admitted into A&E; well, twice actually, so they bundled me out the door at two o'clock in the morning the first time. And it turned out to be pancreatitis, which is probably caused by a gallstone escaping the gallbladder. I got septicemia, and I got a couple of other things. So I was six weeks in intensive care. And it's my honest belief, but I say it's an untestable thing to say, but that my body wouldn't have been strong to withstand all that. The surgeon who subsequently took out my gallbladder to avoid any repetition with gall stones, he said... Because I was questioning whether, because it was the first time anything like this ever happened, whether it was necessary. And he said, "Well, about 50% of people who get pancreatitis like you die. So you're lucky to have escaped that. And then you had septicemia on top of it." And so that's my belief that it was some inner strength that really got me through it. It was very challenging to keep to the...
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Ask Jack #7 | S4E51 bonus
05/04/2022
Ask Jack #7 | S4E51 bonus
Welcome to the second season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to . Introduction Welcome back for this season’s second installment of Ask Jack, and have we got a ‘meaty’ topic for you today. This episode’s topic: meat replacements. Jack has carefully curated several questions around this topic, and we have solicited some directly from the OMS community. With summer around the corner, at least for those in the northern hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences? Thanks to Jack McNulty, we are about to get some answers. Happy to chat with you again, Jack. We’ve got an audience hungry for advice on this episode’s topic, so let’s dig right into our first question. Questions Jack, some people can give up meat itself, but not the taste or texture of it. Are meat placements OK in general within the OMS program? Also, if one does choose to use meat replacements, what should they be on the lookout for in the ingredients? Are there specific ones to avoid? Do you have any fun ideas for creating meat-like yet OMS friendly foods with ingredients like seitan and tofu? Jack, what is your absolute favorite type of veggie burger, and how can our audience source your favorite recipe for it? Switching gears to hear from some specific members of our global OMS community, Linda from Germany has taken to using soy crumbles which have to be rehydrated, making them like chicken or meat. Are they OK to use or are they too processed? And jumping continents but on a related note, Vickie from the US has another soy question. She’s curious about your take on soy curls. She’s not sure if you can access them everywhere, but her understanding is they are extruded and dehydrated soybeans. Can you explain the differences between Soy Curls and TVP? Here’s a question from Leissa: there are so many different types of vegan meat alternatives. It’s often easy to use these alternatives when cooking for a mixed crowd or for the family when you’re tired and need a quick meal. Can you recommend specific options for a quick, easy, OMS friendly, meat alternative meal? Nicola from Canterbury in the UK had a saucy question… about Bolognese. She wanted your best advice for a good ragu. She’s used red, green and brown lentils, but others suggest finely-chopped mushrooms or crumbled tofu. What are your thoughts, Jack? Finally, Jack, I know you’ve been vegan for a long while, so meat has been nowhere near your radar. When one makes a health-based or ethical choice to forgo meat, do you think it’s a good idea to even find substitutes that taste similar, or just leave it behind and explore the bountiful world of other delicious options that are nowhere near the same flavor profile? Thanks for another illuminating episode, Jack. And I look forward to having you back in the thick soup of more questions on the next episode of Ask Jack, which will premiere on July 6th! About Jack McNulty: Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack has operated his own catering business and cooking school, while also finding time to write about cooking. He is currently operating his own subscription-based providing instruction and recipes supporting a vegan lifestyle. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the , and authored the Eat Well chapter in the . Jack’s Links: To get the veggie burger and grilled tofu recipes Jack mention in this episode, click . Visit Jack’s website for mouth-watering OMS-compliant vegan recipes, ingredient information, and to learn useful vegan cooking techniques. Be sure to check out Jack’s weekly international newsletter – – written with the aim to inspire people to cook healthy plant-based food. Jack’s social media links are all here: . Coming up on our next episode: On May 16, “travel” to Paris to meet Nigel Bartram on Living Well with MS Coffee Break #31. Nigel is from the UK and has been a member of the OMS community since 2014. His latest project – publishing a book of humorous essays on his experiences with MS. You’ll want to smile after hearing his tongue-in-cheek impressions of life with MS, so please tune in! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 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 . S4E51b Transcript Ask Jack #7 Geoff Allix (00:00:02): Hi, I'm Geoff Allix, host of Living Well with MS family of podcasts from Overcoming MS. Jack McNulty (00:00:07): Hey everyone, Jack McNulty here. Welcome to another exciting new season of Ask Jack, a special Living Well with MS Podcast series. I'm excited and honored to answer food and cooking related questions from you, the Overcoming MS Community. Geoff Allix (00:00:22): To submit a question for future episodes of Ask Jack, please email us at , that's . Please check out this episode’s show notes at and dig into additional information and links on what we'll cover. Geoff Allix (00:00:41): And now let's rev up our culinary curiosity and Ask Jack. And have we got a meaty topic for you today? The episode's topic is Meat Replacements. Jack has carefully crafted some questions around this topic and we've solicited some directly from the OMS community. With summer around the corner, at least for those in the Northern Hemisphere, we expect people will be cleaning off their grills and readying them for action. But since research shows that meat is a no-fly zone for people with MS, how do you capture that texture and flavor without the negative health consequences? So thanks to Jack McNulty, we're about to get some answers. Happy to chat with you again, Jack. And how are you? Jack McNulty (00:01:21): I'm doing great, Geoff. Thanks. It's certainly good to be back. I'm really looking forward to our conversation today and to answer as many questions as we possibly can get to about meat replacements. Geoff Allix (00:01:32): And I think this does come up a lot, doesn't it? I think on other topics we've touched on it because these are questions that do arise very often. Jack McNulty (00:01:42): Yeah. I was just reading some studies earlier today as the billions of dollars that are just being poured into the industry worldwide in terms of creating these vegan meat replacements. It's really astounding how much money is going into it. Geoff Allix (00:02:01): And even if it's not a meat replacement as such, synthetic meat is coming up now? Jack McNulty (00:02:07): Yeah, exactly. Geoff Allix (00:02:08): It’s more than just our health on the line here. We're also talking about climate; we're talking about deforestation. Jack McNulty (00:02:20): Yeah. Animal rights, those sorts of things. Geoff Allix (00:02:22): So yes, absolutely. And so yeah, if people are going to eat meat, then if that can at least not affect the planet, then that's another benefit. We're not talking about that. We're being selfish and talking about ourselves. Jack McNulty (00:02:35): That's right. Geoff Allix (00:02:35): The health benefits. But yes, I don't want to say it is an evil thing, there's certainly benefits to not chopping down huge amounts of Amazon rainforest. Geoff Allix (00:02:46): So we've got audience hungry for some advice on this episode's topic. So we'll dig right in. Jack McNulty (00:02:52): Mm-hmm (affirmative). Geoff Allix (00:02:53): So Jack, some people can give up meat, but they really want the taste or the texture of meat. So are these meat replacements okay in general with people following the OMS program and if someone does choose to use meat replacements, what should they be looking for in the ingredients? Are there specific ones they should avoid? Are there good go-to meat replacements they could use? Jack McNulty (00:03:21): Yeah. I think meat replacements can have a positive role in an otherwise healthy OMS lifestyle and diet. Obviously and pretty much like most everything else, there's a certain degree of personal responsibility involved. And that begins with a thorough understanding of a few things, ingredients, serving size, that sort of thing when you're purchasing something off the shelf in a supermarket. And I think that there are some reasonable factors to consider, for instance if you're looking at the nutritional content in the labeling, I think one of the first places to look is the sodium content. Like any processed or convenient type food, sodium is a big problem. And as we know from the HOLISM studies that have been done, high salt intake is not necessarily a good thing for people with MS, it should be a lower sodium intake. And so I always look at the sodium amount if I'm considering buying something off the shelf. Jack McNulty (00:04:34): I like to aim for on a per serving basis, anything that's certainly less than 400 milligrams per serving. Now that's taking into consideration, otherwise healthy lifestyle, and diet, which I do follow. And generally I have a very low sodium intake anyway, and so that's my top amount there. Per serving would be about 400 milligrams. Jack McNulty (00:05:04): I take a look at the saturated fat, obviously that's a big consideration for anybody following the OMS program. And so for me again, if anything is less than say two grams per serving, I'm generally okay with that. And that's again with the caveat that, that's for someone that's following an otherwise healthy lifestyle and diet where your saturated fat intake is relatively low. Jack McNulty (00:05:33): Fiber is another thing to consider. Most of these products are pretty low in fiber. A lot of that's been stripped out. Some of them are better than others. I like to try to find something that's going to be greater than four grams. I think it's also important to understand that a lot of times, because this is a protein replacement in the diet, and a lot of times you're replacing fiber rich foods in your diet with something like a meat replacer. You're not eating your tempeh or legumes or lentils or something of this nature and replacing it with something else that's going to be much lower in fiber. And so I take that into consideration. So if I do that I either combine it with something that's fiber rich, or I choose a product that's going to have a higher amount of fiber in the first place. That's just something to consider. Jack McNulty (00:06:27): I also take a look at binders and emulsifiers. Now these are common ingredients in any meat replacer, or any sort of convenient product. The problem is there's not a lot of information that's been done, not a whole lot on the scientific side anyway that I can find that states whether these products that are being used are, "What's the long-term ramification for human health?" That question is still out there. So while that's dangling, I tend to say, maybe my intake should be a little bit less in those particular areas, so that's certainly a driving force in any decision I'm going to make. The lower the amounts of those binders and emulsifiers the better. Jack McNulty (00:07:17): I think it's also important to understand that meat replacements can work as a pretty good transition for some. So, some people that are new to the lifestyle, they're going to be coming basically to the program or possibly with a meat centric, dairy centric, convenience food centric, kind of diet. And to change that from that, to going into something full-blown plant-based that's going to be fiber rich, that's going to create some problems. That's going to create some digestive problems, that's going to create some bloating in the system and that sort of thing. And it's really recommended that the transition to help your microbiome should be three to six months, that sort of timeframe, and smaller portions as you ramp up as far as the information I've been able to find. And so, during this phase, sometimes these meat replacements really work as a nice transitional product to help get you on the right path towards plant-based. Jack McNulty (00:08:37): When you do have a lot of problems and you switch over to a plant-based diet and you have this bloating and discomfort, that is a put-off to a lot of people and they walk away from the diet and say, "I don't want to do this sort of thing because it makes me uncomfortable." Understandably so, but maybe it's just you need to allow for a little bit of time into transition into it. Jack McNulty (00:09:02): I think the bottom line really Geoff, it's not a meat replacement diet we're talking about, you have to look at this more in micro terms. It's more of a single use replacement. It works sometimes, especially if you're looking at products that have acceptable levels of sodium, saturated fat, fiber, use minimal amounts of binders and emulsifiers, that's probably going to be okay when viewed in context of an otherwise healthy diet. Geoff Allix (00:09:37): When we say meat replacements here, we're talking about things that use the trade names, like Beyond Meat. Jack McNulty (00:09:45): Exactly. Geoff Allix (00:09:47): We're not talking about soy, seitan, those sort of single- Jack McNulty (00:09:52): No, not necessarily although, some of those products used for convenience matter. Geoff Allix (00:09:59): Yes. Jack McNulty (00:10:00): You have to just imagine walking into a grocery store and every time I go into a grocery store, I look at the expanding array of offerings in the vegan section, which once used to be in the corner of the supermarket, now is pretty prominent and it's growing. Geoff Allix (00:10:18): Mm-hmm (affirmative). Jack McNulty (00:10:18): And so if you look at those things and you see sausages, you see schnitzel, you see the Beyond Meat products, the cheeses, the vegan butters and on and on. It's basically all kinds of foods that are being replaced just more on the convenient side. That's what I'm talking about. Geoff Allix (00:10:40): And I would say actually from looking through those fairly extensively, the majority are not healthy on the OMS diet. They're- Jack McNulty (00:10:50): That's right. If you look at the sodium, saturated fat, and fiber, that's going to eliminate 75, 80% of the products available today anyway. Geoff Allix (00:11:02): Yeah. Jack McNulty (00:11:02): So that's a very good way to just sort of weed out all the things that aren't going to work for us. Just look at those three things, that's usually going to be enough. Geoff Allix (00:11:15): And it is possible to find some things. I mean, I have to say there was one recently I found it was actually in the frozen vegan section. They had veggie burgers, really if you think the original vegan burger from back in the 60s, 70s, mostly those contain huge amounts of ingredients, probably a lot of oils, but actually there was one that I found, which was really good, it was basically vegetables and because it was frozen, they weren't worried about things to prolong its life. And actually it was sort of held together because it was frozen. So you could grill it from frozen and the numbers were all good. And actually I thought, okay, there's a number of ingredients, they're all vegetables so if I'm going to eat a fast-food burger, that would be a convenient food that I think actually there's not too much wrong with that one. Jack McNulty (00:12:22): That's right. And as a chef, I'm just naturally curious about a lot of things anyway. I'm curious about making things myself, but I'm also curious about what's going on in this space, are some of these things really worth it? And as an example, just a couple of days ago, I was in there and I saw a new product that was basically a schnitzel that was made out of pea protein and that sort of thing. It fits within the guidelines of OMS, right? And the sodium content was relatively low. And all these factors I considered, and I thought, what the heck, I'm going to just try it and see how it is. And I came home and I prepared it and ate it. And I was just highly disappointed. I mean the breading fell off, the texture wasn't right, the flavor wasn't there. And so I thought, I can do this better myself using a kohlrabi schnitzel or a celeriac schnitzel or something like this, that's way better than something that's purchased off the shelf. So many times that's going to occur as well. Geoff Allix (00:13:34): And I think we [crosstalk 00:13:36], we mentioned taste and texture, and I think that's important as well, because if you were to eat a burger from McDonald's, Burger King, Wendy's, Five Guys, wherever, certainly the basic burger from a McDonald's or Burger King, I don't think it'll be very pleasant on its own well, not unpleasant. It just wouldn't taste of an awful lot. The flavor is coming from the other stuff that's in with the burger, their sauce, the vegetables, the salad, that's where the flavor comes from. Jack McNulty (00:14:09): [inaudible 00:14:09] also, yeah. Geoff Allix (00:14:10): Yeah. So actually we can still do the elements that make a burger nice. We can add a nice sauce, we can add tomato, we can add lettuce, we can add all these things and some pickles and whatever, all fine. And then it's the texture. So, it's not just taste, it's actually a lot of things like a burger may not have much taste, there's not an awful lot of taste of chicken. There's not an awful lot of taste of a basic burger. A lot of these things don't have a lot of taste and they're just vehicles really, but it's got that chew. And that's really what we're aiming for is the chew- Jack McNulty (00:14:46): That's right. We've become very used to the idea of meat in our food that has a certain mouth feel, has a certain texture, that has a sort of umami-type taste that comes from the cooking of the meat, which is the teenager proteins. So these are the things that if you just break it down and look at that, you can think of ways, "Can I replace that in a healthier way without having to turn to that meat or without having to turn to some factory produced product?" Jack McNulty (00:15:30): And that really becomes the key or the crux. And I think that it's far more important to develop this excellent eating and cooking habit or this understanding of ingredients, than it is to worry much about, how am I going to replace meat in this recipe that's calling for ground beef or something like that? There are tons of ways to do that....
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MS Hope – A Conversation with Mathew Embry | S4E51
04/27/2022
MS Hope – A Conversation with Mathew Embry | S4E51
Bio: Mathew Embry is an internationally recognized documentary filmmaker and advocate for people and families dealing with multiple sclerosis. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS on . Questions: What are the core principles of the MS Hope approach? How does that align with Overcoming MS? What does a typical Matthew Embry day look like? How often should you exercise? I’ve heard you say, “No cheat days”. Does this apply to exercise? How do you measure progress? What type of exercise is best for people with MS? What about people with mobility problems? What about people with heat issues? More weight or more reps? One last question. For someone newly diagnosed with MS what would be your key piece of advice? Links: Learn more about Mathew’s nonprofit organization, Check out MS Hope on Follow Mathew on Follow Mathew on Watch MS Hope videos on Watch Mathew’s documentary, Coming up next: Tune in on May 4, 2022 for the next new episode of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer answering food and cooking questions from our community that inform their healthy OMS lifestyle. In this instalment, Jack devours a topic many of us grill-loving folks are hungering to learn more about – meat replacements. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within about 72 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 . S4E51 Transcript MS Hope: A Conversation with Mathew Embry Geoff Allix (00:01): Welcome to Living Well with MS, the podcast 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. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at or in whichever podcast platform you use to tune into our program. 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. Have questions or ideas to share? Email us at , or you can reach out to me directly on Twitter, @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Geoff Allix (01:05): And now let's meet our guest for this episode. Welcome to today's episode of the Living Well with MS podcast. On today's episode, I'm joined by Mathew Embry. Mathew Embry was diagnosed with MS in 1995 and is now living relapse free, which he attributes to lifestyle modification, following recommendations from his father, a research scientist. He created the documentary Living Proof, available worldwide on Amazon Prime, to discuss his life story. He also has the MS Hope website, which includes resources about his recommendations for lifestyle modification. Although there are some differences between the MS Hope approach and OMS, there are many more similarities. So welcome to the Living Well with MS podcast, Mathew Embry. Mathew Embry (01:51): Thank you for having me on the podcast. I really appreciate it. Geoff Allix (01:55): And for any of our listeners who aren't aware of who you are, and it is in the show notes about your documentary, Living Proof on Amazon Prime, which I'd definitely recommend. But if they are unaware of you, could you just tell us a little bit about yourself? Where you're from, your life, and MS in your life as well. Mathew Embry (02:17): Yeah, sure. I mean, again, my name's Mathew. I live in Calgary, in Canada. I'm 46 years old now... Or sorry, 45. I'm turning 46 this year. Geoff Allix (02:29): It's my birthday next week and I'm 51 next week. Mathew Embry (02:33): Yeah. And I was diagnosed with MS in 1995, when I was 19. And what I've done is, over the years and over the past decade, I guess, I really tried to share my journey with people all over the world, and how I've implemented science-based nutrition, exercise, and vitamin D and just different strategies to be able to control my MS. And it's been really interesting because my job is, I'm a filmmaker. That's what I do. I'm a director, producer. So I've been able to integrate both my journey with multiple sclerosis and my craft as a filmmaker to be able to share information with people that will hopefully make their lives better. Geoff Allix (03:21): What's the main name of the approach? MS Hope approach, would you call it? I know you sort of have the name of the diet and you have the… Mathew Embry (03:30): Yeah. Well, the diet's actually called the Best Bet Diet, and that was created by my father, my dad, Ashton Embry. He is actually Dr. Ashton Embry but he's a research scientist... He's not a medical doctor, he's a research PhD. He created that diet back in 1995. And the diet is... You can find it on MS Hope.com. And MS Hope.com is kind of an outreach website. It's one that we tried, I tried my absolute best to distill the information to make it as easy for people as possible to learn about it and to be able to implement it into their lives. Geoff Allix (04:09): What would you say are the core principles then of your approach? Mathew Embry (04:14): The core diet principles are dairy free, gluten free, low saturated fat, low sugar. We don't have beans in the diet either. Eggs are limited. And for sure, we ask people, make sure people get their... If they're allergic to eggs checked, things like that. And lots of vegetables, lean meat, fish, lots of fish, if you can get it. And then we have a whole list of supplements, high dose vitamin D and then regular vigorous exercise is part of the program. Geoff Allix (04:54): Okay. So I think, yeah, there is a lot of overlap between your, the diet, and the whole MS Hope approach and Overcoming MS, certainly. And I would say to people who are new to these programs, I think those overlaps, and I hope you'd agree... Those overlaps, things like dairy, they're the big hitters, really. Well, exercise is one, you really... And that's a classic thing. My father who had MS, he was told not to exercise. So the approach has drastically changed. I'm trying to think of other things because there's so many overlaps really. And the diet's quite similar, low saturated fat, low process or no processed food. Definitely no dairy. Vitamin D's in both of them. Exercise, both of them. What's your thoughts on smoking? That's one didn't come [crosstalk 00:05:47]. Mathew Embry (05:46): No, no, no, not at all. Smoking's not... A no go. Geoff Allix (05:48): I kind of assumed that because it's just bad for you, but you don't mention that. Yeah. Overcoming MS, they do say no smoking, straightaway. Definitely. Not just on the fact that it's a really bad idea for everyone, but actually specifically for people with MS. So what does a typical Mathew Embry day look like? Mathew Embry (06:10): I get asked that question quite a bit and it's... I don't want to come across like it's boring, but it's certainly routine. And I think, yeah. I've got two children, I've got two dogs and I manage a career as well. And for me, I try to... It's very routine. I get up, I have a breakfast that's in line with the Best Bet Diet. And then 90% plus of the time, I exercise right away. And if you get ahold of me and if you want to work with me, you'll often get an email from me saying, "Well, I'll meet you after 10:30 or I'm available after 10:30 in the morning." Because that time for me is work too. It's getting to the gym, it's doing runs. It's getting some activity. And it's a huge part of my process. Just, it's major. And it's somewhat non-negotiable. If I can't get that workout in the morning, sometimes you'll find me on the... Downstairs, on our elliptical trainer at 10 o'clock at night. It's so, such part of the fundamentals of my program. Geoff Allix (07:14): So it doesn't have to be morning? It's flexible around lifestyle? Mathew Embry (07:19): It is. And I really try to share with people, if you follow me on social media, things like that, I try to share with people how to do that because it's not easy to be able to find that time. So I try to share tips and strategies that I've learned to be able to make that time daily. And that's about eliminating things in your life, but it's also, to be able to add it. Because that can be really hard for people. And then the remainder of my day is, like most other people, I work. I have to do my job. You know, I have to have my responsibilities with my family, family responsibilities. Mathew Embry (07:52): I try to make time for prayer and meditation, these mindful pieces. And that can be walking too. But definitely time to be in my own head, and training that mind to control negative thoughts, which is... That is not an easy process. Geoff Allix (08:10): Yeah. We are recording this a few weeks before it actually goes out, but we're right in the middle of the Ukraine war, really. Which I mean, especially over here, it's very easy to start doom scrolling through news and that's another thing. I mean, it's a core part of OMS. One of the pillars is meditation and mindfulness, which you just touched on there. But I know that's... It's not, again, it's not really mentioned, but would you say that's an important aspect? Whether that be traditional mindfulness or meditation, like audio, or it could be prayer, you mentioned. It could be... I mean, I think walking. Why we say mindfulness rather than meditation I think is, you can be mindfully walking. You can be mindfully riding your bike. Mathew Embry (09:02): Yeah. I agree. Geoff Allix (09:03): You don't have to be sitting there with your fingers in the right pose and doing some yoga mantra. Mathew Embry (09:10): Yeah. I totally agree with you. And I think that those practices are really personal. I don't feel like I should, that I have the right or anything to tell someone how to do that. I just think that there's a lot of ways that you can access that. Well, it's tough because you have to make the time. Right? So once you make the time, then it's about implementing a practice. And I agree with you. Going for a long walk in nature or even just finding that space mentally to be able, just to stop. Try to tune out the negativity, and just... It's training the mind. And that's how I see it. I see it like it's a discipline thing. Diet's discipline. Exercise is discipline. And the mindfulness is being disciplined with what thoughts you're going to entertain and how you're going to learn to control those two streams, almost. Like the good and the bad thoughts coming at us. It seems to be a little uncontrollable. Geoff Allix (10:01): Yeah. I think it was someone, it might have been Jon Kabat-Zinn or someone like that who said, "If you can't find half an hour for mindfulness every day, you need to find an hour for mindfulness every day." Which I think is a pretty good quote. Geoff Allix (10:15): So, talking about exercise then. You're sort of saying you exercise every day. I mean, I've seen things where they've said actually... I've looked through loads of exercise programs really just to sort of advise people. I've tried to sort of dip into most of the big ones, whether that be the MS Gym, Gretchen Hawley. You know Gretchen and- Mathew Embry (10:41): Yeah. Geoff Allix (10:41): ... Gretchen does a lot of stuff with us, and a lot of those MS specific exercise things, and some of them are very much like, oh, no more than five times a week. Some of them seven, some of them even down to three, I think. But I think you say every day you do some exercise, is that right? Mathew Embry (11:02): Yeah. Yeah. I do. And again, I'm not an expert or a doctor, so I'm not giving advice for people to do this. Geoff Allix (11:12): This is the advice of a filmmaker. Mathew Embry (11:13): I don't want to come across... Yeah. This is what I do. And I think that I share that journey where this is what I do every day. I try my best to exercise every single day. And I think people have posted on my thing, "Oh, you need a rest day," or "You got to give your body a break." And I just don't buy that. I just don't, because there's been too many times in my history and the last 20 years where I've been, let's just say fatigued, where I'm just super tired, and mentally I get some brain fog. If I would've taken a rest day, I would've sat down, but I have gone to the gym or gone for a run and I feel a hundred percent better afterwards. I've like restarted my day. And so I had to learn that in my process, but I mean, there's just too many times that that's happened. Geoff Allix (11:54): But can you adapt what you do? So, I mean, like... So personally, today I have a weekly session with my, we have this neuroactive thing, which is we have a neurophysio and she does a weekly session with us. It was quite a muscle workout. You know, I was doing a lot of dead lifts and my legs are feeling it definitely. But then tomorrow I would be like, okay, tomorrow's going to be more of a cardio day. I'll probably go on the bike. I'm not going to work the same muscles. I'm going to be looking at... So. Mathew Embry (12:32): Sure. Yeah. That makes sense. Geoff Allix (12:34): Does that work? Is it like, okay, well, if I've done a lot of cardio today, I could do a lot of strength tomorrow or swimming or something different? Mathew Embry (12:46): Well, yeah. I mean, again, I'm not an expert in this, but one thing I have learned over the years is I just kind of listen to my body. And my body will give me cues for what it almost wants to do. And I just kind of listen. I'm like, all right, you want to do this today? Let's go do this. So people post, "Can you set up a regimented workout plan?" I'm like, "Well, I can't really, because I don't really know what I'm going to do." Mathew Embry (13:04): I know I'm going to the gym. I know I'm going out to nature, but once I get there, I kind of change it up. And that's also part of my process that I share. Sometimes that changing it up is an internal dialogue that's happening while I'm doing it. And I think that's another part of the process. Where, I get to the gym, I'm only going to be here for 20 minutes, but then 15 minutes in, I'm renegotiating with myself to go a little bit further. Geoff Allix (13:30): Yeah. Mathew Embry (13:32): And if I'm too structured, then I find, I can't have that same, listening to what the body wants. But I wouldn't overdo anything if that makes sense. Geoff Allix (13:42): Yeah. So you're not going to injure yourself. Mathew Embry (13:44): No. Geoff Allix (13:45): Yeah. There was an interesting... A guy in the UK, Scotland, I think, called Graeme Obree, who was a cyclist. And he had the one-hour record for a while and he was quite an in interesting character because he made his own bikes. And they made really weird, structured bikes and they ended up banning all of those because you have to use a normal bike eventually. But one of the things he said was that he would go out, he'd get fully in his cycling gear and he'd go out, get on his bike and be on the road before he'd allow himself to say that he ate too much to go cycling. He'd go through all the prep. So you wouldn't have that excuse of... He'd be there, he'd be on his bike and then say, "No, my legs are really sore. I really shouldn't be doing it, and I'll get off." But he had to make himself, even if he knew he was [crosstalk 00:14:31]. Mathew Embry (14:30): I understand. Geoff Allix (14:31): And I thought, "Yeah, okay, I get that." You've kind of... And then once you take that first step, you're like, "Yeah, actually it's nice. It's outside and it's yeah." Or make yourself run in the rain. You know? If it's raining, I'm still going to go out running. I'm just... Because once you do it, it's okay. It's all right. Mathew Embry (14:47): Once you do it. And then the question is that conversation is daily and that's... I also try to share with the people, I've been in this for over 20 years. I still get it. I get it. You know, yesterday morning I woke up and it was minus whatever, here in Canada. I don't want to run outside. But as soon as I get going, then I'm like, let's go. Geoff Allix (15:04): Yeah. And so one of the things I've seen, sort of hashtags and things, and the saying you have is, "No cheat days." So does that apply? Is that for everything? Or is that for exercise, for diet? What do you mean by... When I see your hashtag, "No cheat days," what does that mean? Mathew Embry (15:25): Again, this is in response to so many people asking me if I've had a cheat day. That used to be one of the most often asked questions. So I'm like, "Well, no, I don't." And I think that's... The part of this program is the vigilance and the discipline. And I try to really share that with people that there's no kind of off switch here. Let's say when it comes to dairy, there's been recent science that's come out to demonstrate how problematic dairy could possibly be. Well, if you're going to have that once a week, I think that works out to about 15% of your life. You're going to be having dairy. Well, don't expect to be at a hundred percent if 15% of your life you're eating things that are detrimental to you. Mathew Embry (16:07): So then, well, and if that's your level, if 85% is as high as you want to get, okay, then that's as high as you want to go. But you're only going down from there, in my opinion. So then the question is, okay, with no cheat days, well, every single day is an opportunity to reach and pursue optimal health. And it's up to you. As each choice comes in, each meal you have, each time you exercise, each opportunity you take to be positive and do these types of things, how high you want to take your life? Geoff Allix (16:35): And how would you measure progress for people? Let's say specifically with exercise, how would you measure someone's progress? Because it's, we're not typical of the general population. I've got MS, you've got MS. So how do you measure your progress with exercise? Because I've come from a background where I ran, I did marathons. I did a lot of sports and stuff and my kids are crazily sporty. So it's all about times, it's all about distances, all about weights. But how do you measure progress now? Mathew Embry (17:11): For me it's still, it's incremental. And I try to share that with people. I mean, I'm doing things too that are quite, whatever that would mean, at a level where they're competitive, but for me it's still... It's incremental shift. So if someone's struggling with disability, like with disabilities, okay, can you walk to the end of your driveway today? Well then, can you walk to the end of your driveway plus a little bit down the block and get back? And it's like, you've got to be able to find those. And I think your point to make, to find those measurables is really important because how do you know if you're getting...
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Coffee Break #30 with Tessa Jane Miles | S4E50 bonus
04/18/2022
Coffee Break #30 with Tessa Jane Miles | S4E50 bonus
Welcome to Living Well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles 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 . Tessa Jane will paint your day in colors galore discussing how she uses art to raise awareness about MS. We hope you enjoy this episode’s conversation with her, coming to you straight from Devon in the UK. Tessa Jane’s Bio (in her own words): My name is Tessa Jane, and I am an artist. My best days are the ones when I forget I have MS. My body tingles with the joy nature bestows – the birdsong, the warm light, or fresh wind on my face. I have an inner glow of happiness and capturing that and applying it to paper, cloth, or any surface continues that delight, taking me to a world of imagination and beauty. It’s a release. I don’t focus on fear or anxiety. My body is clear of pain, words trip off my tongue elegantly. I can balance and am full of energy. I have clear, present thoughts which spur me on, and I am happy. The only trembling or shaking is because of excitement and laughter. My body is light, and spirit lifted. Following the Overcoming Multiple Sclerosis (OMS) program has brought me more of these days. Learning to be mindful, present, and to meditate has reduced stress and lightened a heavy heart. I do not sit cross-legged, humming. I walk amongst trees, or around my garden. I float in water, or I draw and create. Gardening, writing, sewing, and knitting are all mindful activities which help to reduce stress and lower life’s adrenaline. I watch and listen to birds, taste my food, and listen to the rhythms of the day. I look for small joys on the bad days. A steaming coffee cup. The light on a golden leaf. Or frost patterns on a car roof. A warm fire or a bowl of tasty soup. Being part of OMS and belonging to an OMS Circle is a comfort blanket. They have become my family and will help shoulder the weight, give good advice, and make me laugh about the detritus that living with multiple sclerosis brings. My walks, creativity, and time in nature is my mindfulness. I’d like to encourage you to find your ways of being present. I’ve pledged to raise £10,000 for 10 years. I can’t do it alone but can with help and support from friends and family. Not all of us can run, but many can write, whittle, knit, sew, crochet, or paint. Join my 10 for 10 campaign and get in touch to find out how (see links below). Questions: Tessa Jane, 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 and I are neighbors in Devon, and part of the same OMS Circle, so a very special welcome indeed! Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? How do you feel the OMS program connects with people of varying abilities? For example, how might someone who faces more physical challenges relate to the program? Can you share any insights from obstacles you may have faced in adopting the OMS program, how you overcame them, and how this experience might help others? Let’s shift gears a little bit and talk about your art. Can you tell us a little bit about your background as an artist, and your relationship to art? You’re a big proponent of using art to raise awareness about MS, and moreover people with MS using creativity as one of the tools to boost mindfulness and manage their condition and their health. Can you share a bit about how you see that working? Putting that theory to work, you’re involved in a very special event happening in May, I believe – the Delamore Arts exhibition. Overcoming MS is a charity partner for this event as well. Can you share what this is all about, and how it represents your philosophy about art as healing in practice? Going a bit deeper into the creative rabbit hole, I understand you’re quite interested in brain scan-based AR. That sounds futuristic! What is that all about and how does it relate to your linked interests in art and MS? Tessa Jane, 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Tessa Jane’s Links: Check out Tessa Jane on Instagram and , all about raising MS awareness through art. You can follow Tessa Jane on Twitter . Have a look at Tessa Jane’s art on Facebook and . Learn more about . Coming up on our next episode: On the next episode of Living Well with MS, premiering April 27, 2022, please join us for a very special conversation with Mathew Embry, an internationally recognized documentary filmmaker and advocate for people and families dealing with MS. After being diagnosed with MS in 1995, Mathew is currently symptom-free of MS and freely shares the science-based strategies he uses to control his MS through . You won’t want to miss this inspirational interview! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 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 . S4E50b Transcript Coffee Break #30 with Tessa Jane Miles 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 . 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 #30, where we are pleased to welcome Tessa Jane Miles as our guest. As always, your comments and suggestions are welcome, by emailing . Tessa Jane will paint your day in colors galore, discussing how she uses art to raise awareness about MS. We hope you enjoy this episode's conversation with her, coming to you straight from Devon in the UK. Tessa, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program. The purpose of this series, to explain, is to get to know some of the diverse members of the community from around the world and today, you are in the hot seat. You're effectively neighbors with me, because I'm in North Devon in the UK and you're in South Devon. We're part of the same broader Southwest UK OMS circle. So, a very special welcome from the Southwest of the UK. Could you tell us a bit about your day-to-day life? Tessa Jane Miles (02:11): Hi, Geoff, thank you. Yeah, hotspot. Well, I'm sat here with my coffee and my day-to-day life has changed slightly with the new addition of a dog. I tend to get up and take him out, which I'm finding quite exhausting, because I'll often have a slow start. I find that if I get up when I wake and my body is ready, I have a better day than if I try to force things. So, I've been falling asleep in the afternoons and evenings, much to my husband Adrian's amusement. I don't get to see the end of any program because I'm asleep before it happens. I try not to have fixed days, but that's kind of the key thing. It usually revolves around art or my garden or being outside. Geoff Allix (03:03): About MS, when were you diagnosed with MS and how was that? Tessa Jane Miles (03:10): Oh, it was really terrifying actually. I'd separated from my previous husband and I was on my own with the girls. We'd had an amazing time getting ourselves resettled and then suddenly, I started to have problems with my sight and it was deteriorating. It reminds me of The Matrix with Keanu Reeves, where it all started to pixelate and do strange things. By November 2008, I wasn't safe to drive. I couldn't see properly and I ended up having to stop teaching, because I wasn't safe in the classroom. I'd been to Royal Eye Infirmary and they’d said, "Well, there's three possibilities. There's a brain tumor, you could have an infection which we can't treat or it might be multiple sclerosis." I'm thinking, "I don't really want any of them, thanks. Is there not a fourth option?" So, I went through a very difficult six months, which I know now, from experience, I was lucky. Because many people are what we call no man's land, in that they've had one relapse or they've had one sclerosis and you are called CIS or it's just one incident, but then it happened again in April 2009. Then, I got the full diagnosis and I'd learned that it was optical neuritis. There was nothing wrong with my eyes. Started to learn and understand what was happening with MS. Life changed dramatically. I stopped teaching and I found myself alone and scared and bored, with no focus. I was playing Farmville and my sleeping hours were all over the place. I was harvesting my crops at two o'clock in the morning because I couldn't sleep. It was all pretty rubbish, to be honest. I didn't really know who to turn to or who to talk about it with. So, yeah. Geoff Allix (05:37): I think there is, because we live in the same county, I mean, I've felt that there really aren’t people around, are there? We live in quite a rural county. I mean, the OMS Circle has meant that I've met people. Until the OMS Circle, I hadn't met anyone with MS. They're few and far between, just geographically. Yeah, you don't really feel connected, do you? Tessa Jane Miles (06:10): No, and people have very different ideas of what MS is. I mean, I'd come out of one relationship and I met Adrian. How do you explain to somebody that you've got MS? I can remember someone saying, "Well, yeah. If you were married, you'd just get on with it. But who might want to commit to somebody who, do they need all that? What's their experience of it?" Yeah, it was tough. I liked to dance. I was doing salsa dancing and I found that that helped keep me fit. I had quite a good diet before, but I didn't know anything about it really. I'm an artist and a designer and I make fabrics. One of my real joys is to take something that's been discarded and make it precious again. Which is a bit of a metaphor, really, for myself, in that I felt discarded. Whereas OMS has helped me to feel precious again, but we'll come to that a bit more later. But the important link is that I needed to make was buttons. I went to meet an upholsterer who had a machine to do them. His name is Bruce, Bruce Jacks, and he's in our OMS Circle. He's not fully OMS, but he values being able to feel connected, which is something else that we are aware of as ambassadors. That there is a degree of difference between purists and people trying to build up or trying to find a balance that they're comfortable with. Then suddenly, he just blurted out about having MS and I was gobsmacked. He said, "Oh, I haven't told you that before, have I?" I said, "Well, no. I'm gobsmacked because I have it too." It created a bond instantly, and this is something else that we find on our Circles. That, because you have this commonality and you have this understanding, this innate understanding of what it is like to have MS, that you don't have to explain that, because we all get it. That's really, really important. But it was him that took me to The Merlin Center at St. Austell, which is one of the specialist centers we have in Devon and the Southwest. I met Jeremy Hobart, or he was Dr. Hobart then, and I learned about the OMS program. I met Colin Bannon and he said, "Well, we've got a group in Plymouth. You can come." But also, very importantly, this lovely lady stood up holding the book, saying how she couldn't walk and now she was walking with sticks. How it had changed her life. Her name was Angela and she's also in our Circle. So, it's kind of drawn all these threads together and tied knots and helped… Geoff Allix (09:19): What was the key thing that tipped you into thinking, "I'm going to follow this program"? Because I mean, there's some doctors fully supporting of it. But generally, there's a, "Well, yeah, healthy diet's good for you." But, full-on support of OMS is unusual, to say the least. Tessa Jane Miles (09:46): Yeah, it is, isn't it? I just thought it was a no brainer, in that it's good for you. There's nothing in it that suggests that it would be bad for you in any way, shape, or form. It's a lifestyle choice, it's not a quick fad thing that's going to fix you. You do it and you're on it and that's for life. Yeah, I just thought, "I'm not going to lose out here. It could help me." The scientific evidence was obviously incredibly important because it felt like that there was real substance behind it. As I say to anybody that asks me about it, I say, "Well, it's not hard to give up something which might mean that you have a better life. Longevity, physicality, mental, all of it." I was really struggling with fatigue and energy and strength. I thought, "Well, if this helps those things alone, that's going to be good." So, I had a big last supper. I had my roast chicken and my potatoes and everything that, at the time, I thought I wouldn't be able to have. But, as you get better with the diet, you learn ways around it. Yeah, and then I started, cold turkey. Within the first week, I was in tears, missing so many things. Had the wrong attitude in my head about what I could have. I didn't chuck everything out. One of the things that the book suggests is you chuck everything out that's not OMS friendly. I couldn't afford to do that, it wasn't practical. So, we've sort of used things up a bit, but overall, I embraced it. Geoff Allix (11:45): We are actually quite lucky, in that we do have a neurologist in Devon. Professor Hobart actually does give out the Overcoming MS books. Tessa Jane Miles (11:54): Yeah. Geoff Allix (11:54): So, there are some neurologists out there who are very, very positive for that. I mean, he's not my neurologist, but I'm very aware that he's very pro Overcoming MS. This may be somewhat ageist, which I shouldn't say as someone in their fifties, but the older neurologists might be more set in their ways sometimes. [inaudible 00:12:16] that a newer generation is coming through that's accepting of lifestyle factors. They seem to get more and more press these days. Tessa Jane Miles (12:25): Yeah, and I think also that they're beginning to realize that the medical profession as a whole is far more positive about holistic medicine and combined medicine. At no point do they ever say, "Don't have your meds." It's a combination of things and that's very powerful too. Although obviously, we've got examples of people who've been able to give up their meds. Because they've been on it long enough and they feel that they've got control of it and they are living a very different life. I know, probably six years now I've been doing OMS, that I am stronger. I am fitter. My fatigue is improved. I mean, we all have bad days, don't get me wrong. There are days when I don't want to step out the door and can't face the world, because I feel that you tend to put up this facade. People will say, "Oh, how are you?" I once stupidly told them exactly how I was. I watched their face completely go blank and drain of color. I thought, "Ah, right. This is one of those British things." Like you say about the weather, "Oh, weather's good, isn't it?" "Oh, I'm fine." We've got a bit of a joke in our family that fine means Freaked out, Insecure, Nervous and Emotional. It comes from The Italian Job, with the Minis. She'll say, "I'm fine." I'm thinking, "Yeah, I am fine." And that… Geoff Allix (13:52): Yeah. For people who are not from the UK, probably the most common greeting is, "How are you?" It's almost not intended as a question. Tessa Jane Miles (14:02): No, they don't actually want to know how you are. Geoff Allix (14:06): Yeah, it's just a greeting. It's just almost like saying hello. Yeah, you're constantly being asked that. I always think that "Are you actually asking how I am or are you just saying that?" Because sometimes they are asking how you are, because you say, "Oh, yeah." Or just not even really answer it and they go, "No, but, how are you?" [inaudible 00:14:23] Tessa Jane Miles (14:24): Sometimes I'll say to people, "Is that a real how am I, or do you just want to check that I'm okay?" Then, some of my closer friends will say, "How are you? No, really, how are you?" Then it can become a more involved conversation, but it's not very often that happens. It's usually, "Yeah, I'm fine." Geoff Allix (14:43): One thing I wanted to ask is how you feel the OMS program connects with people with differing abilities. For example, how might someone who has more of a physical challenge relate to the OMS program? They maybe have difficulty walking, for example. Tessa Jane Miles (15:01): Well, this is my big project, my big thing at the moment. I realized, through listening to Alison Potts, and mindfulness, it's the thing that, after the diet, I found the most difficult to do. So, I've really been focusing on mindful activities and I'm aware that, or I feel that people with more physical disabilities could feel more on the outside. As we see lots of things about being strong, MS fighter. Anything on social media, it's about, "Oh, I've done this and I'm beating that." I've watched various TED Talks and I'm focused much more on mindfulness and understanding the power of that. I'm just doing an amazing painting course with an artist at the moment and it's so mindful and it's so meditative. Today, we were doing taste and...
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Introducing Lifestyle Change to Your Healthcare Professional | S4E50
04/06/2022
Introducing Lifestyle Change to Your Healthcare Professional | S4E50
Bio: Mitzi Joi Williams is a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who serves as the Founder & CEO of the Joi Life Wellness Group Multiple Sclerosis Center in Newnan, GA. Dr. Williams is considered a subject matter expert in Neurology, Multiple Sclerosis and Health Disparities. She has over 15 years of experience in the field of Multiple Sclerosis. She received her undergraduate degree in Neuroscience and Behavioral Biology from Emory University in Atlanta, GA, and received her Doctor of Medicine Degree from Morehouse School of Medicine also in Atlanta, Georgia. She completed her Internal Medicine Internship, Neurology Residency, and Multiple Sclerosis Fellowship at Georgia Health Sciences University (formerly MCG) in Augusta, GA, where she received numerous accolades and served as Chief Resident of the Neurology Residency Program. Dr. Williams has spearheaded and participated in multiple steering committees and work groups to further research in underserved populations with MS with a focus on the African American population. She has recently joined efforts to increase diversity in clinical trials and educate the community about the importance of research participation. Through collaborations with national and international committees, she advocates for people living with MS to share in the decision-making process with their healthcare teams to combat this disease. Dr. Williams is the author of “MS Made Simple: The Essential Guide to Understanding Your Multiple Sclerosis Diagnosis.” She continues to live out her mission to provide personalized Multiple Sclerosis Care delivered with expertise, compassion, and joy. Questions: Welcome to the program Dr. Williams, and thanks so much for joining us on Living Well with MS. Let’s dive right in. Your background is stellar. You have established quite a prestigious career as a neurologist and MS specialist. Can you share a little about your background as a medical professional? What inspired you to focus on MS in your training and practice? Let’s chat about Joi Life Wellness Group. That’s the MS center you founded and lead in Georgia. What are your core principles in this practice? Given that you see a steady stream of people with MS, you must encounter certain common obstacles people have in dealing with their diagnosis all the way to sound MS management and treatment. What are these in your view, and what’s your take on overcoming them? As you may know, the organization behind this podcast – Overcoming MS – promotes evidence-based lifestyle modification for better health and MS management. What’s your take on how lifestyle factors fit into treating MS? Our content theme for April is ‘advocacy’, so in that spirit, and in your experience as a neurologist specializing in MS, what are some key strategies people with MS can use to discuss lifestyle factors and effective lifestyle modification with their healthcare professionals? What if someone encounters resistance from a doctor or other healthcare professional – how should a patient approach that, or handle that? Do you have any essential tips for people who are newly diagnosed and just entering the complex world of treating their MS in the medical arena? On another note, you’re also quite involved in researching MS’s impact on the African American community. There is much to learn about the prevalence and penetration of MS in different communities. Do you have any insights to share about your work to date? Finally, what is your vision for how you’d like your practice and work in the MS field to evolve and grow? Thanks so much for being our guest on Living Well with MS, Dr. Williams. We are excited about and grateful for the amazing work you’re doing in the MS community. Links: Learn more about Dr. Williams’ practice, Check out Dr. Williams’ Facebook alter ego, Follow Dr. Williams on Learn more about Dr. Williams’ professional background on Watch some of Dr. Williams’ informative videos on her channel Coming up next: On April 18, unpack your curiosity about our diverse global OMS community for the premiere of Living Well with MS Coffee Break #30, where we travel to Devon, England to meet , an artist who raises awareness of MS through her creative oeuvre. You’ll also learn about Tessa’s involvement in the exhibition, for which OMS is a charity partner. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within about 72 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 . S4E50 Transcript Introducing Lifestyle Change to Your Healthcare Practitioner Geoff Allix (00:01): Welcome to Living Well With MS, the podcast 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. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at or in whichever podcast platform you use to tune into our program. Geoff Allix (00:39): If you enjoy the show, please spread the about us on your social media channels or leave a review wherever you tune into our podcast. Have questions or ideas to share? Email us at , or you can reach out to me directly on Twitter @Geoff Allix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Geoff Allix (01:05): Now let's meet our guest for this episode. Joining me this week on the Living Well with MS podcast is Dr. Mitzi Joi Williams. Dr. Williams is a board-certified neurologist and fellowship-trained multiple sclerosis specialist who serves as the founder and CEO of the Joi Life Wellness Group Multiple Sclerosis Center in Union, Georgia, USA. Geoff Allix (01:30): Through collaborations with national and international committees, she advocates for people living with MS to share in the decision-making process with our healthcare teams to combat this disease. Dr. Williams is the author of MS Made Simple, The Essential Guide to Understanding Your Multiple Sclerosis Diagnosis. She continues to live out her mission to provide personalized multiple sclerosis care delivered with expertise, compassion, and joy. Welcome to the program Dr. Williams, and thank you so much for joining us on Living Well with MS. Dr. Williams (02:01): It is my absolute pleasure to be here with you. Geoff Allix (02:05): To dive right in, you've got a very impressive background and listeners can get more detail of that in the show notes. You've established a prestigious career as a neurologist and MS specialist. Could you share a bit about your background as a medical professional? Dr. Williams (02:22): Absolutely. I've been an MS specialist for upwards of 15 years, really because I have a passion for helping people to kind of navigate this journey. I like the fact that I have close contact with my patients, so that I grow to know them and their family, so almost like I'm a part of their family. I like that and that was one of the reasons that I chose MS as a subspecialty within neurology. Dr. Williams (02:48): As my career has evolved, I've really found that there needs to be a focus on education. I began to focus on teaching people about the disease process, because I found that many people would come to see me and they still wouldn't know what MS was, even after they had it for like 10 years. They couldn't really articulate what they thought it was and what it was doing to their body and why they were on the medications they were on. That really started my passion for educating about the disease process, and also in empowering people to do the things that they can, to help their brain health and help their overall health as well. Geoff Allix (03:26): Why MS as a specialization? What got you to particularly pick MS? Dr. Williams (03:32): I get that question a lot. I think for me, it's the challenge that I like. It's the challenge as well as my fascination with the neurologic process. In many other aspects of neurology, people would have damage to the brain or to the spine, and there was really nothing that we could do to modify that disease. Dr. Williams (03:54): The thing that I loved about MS is that every person was different, which made it a bit challenging, but that there also were things that I could do to potentially modify the disease or affect change. Since I started my career, those options have grown exponentially. It's a whole different ballgame now than it was when I started practicing. The other thing that I like is that I really felt like this was a full focus of medicine that was really on the frontier of the scientific exchange. Dr. Williams (04:26): Meaning, it wasn't something where everybody had it figured out down to the receptor, like diabetes or high blood pressure, that there was still a lot more to discover. That's also what attracted me to the field of neuroscience, but specifically to MS. I love the patients. I love spending time with them and getting to know them. Geoff Allix (04:43): I think it is quite an exciting time now. My father had MS and there wasn't very much treatment, but now it's just every month, there's another treatment. There's some more research being done. There's something found out about causes. It is a highly active area, isn't it, of research and change? Dr. Williams (05:05): Absolutely. Our meetings, when I first started practicing, our big neurology meetings would have maybe two or three classes about MS. You start on a Saturday with one class and stay until the next Thursday for one more class, but now, much of the conference has MS classes every day. That just really goes to show how much the science has advanced and how much we're trying to improve our understanding to help treat people with MS. Geoff Allix (05:34): To get a bit of an understanding about the Joi Wellness Group. You founded this MS center in Georgia in the USA. What are the core principles of your practice? Dr. Williams (05:47): Yeah, so really, my core principles are, I love to engage, educate, and empower my patients to make them active participants in their treatment process. By doing that and starting my own center, I'm really able to spend the time with my patients, educating them about their disease process, helping them understand, and also empowering them with tools to adjust lifestyle or to make lifestyle changes, to improve their overall health. Dr. Williams (06:17): We talk a lot about things like mindfulness, diet, exercise, yoga. I'm a huge yoga advocate. It really affords me that ability to treat people how I see fit to really spend and invest that time so that people understand what's going on and know what they can do to improve their health. Geoff Allix (06:36): With all these people that you see with MS, you must see certain common obstacles that people have in dealing with MS, all the way from their diagnosis through to the management and treatment of MS. What obstacles do you think that you see most commonly and how would they overcome those? Dr. Williams (06:57): Yeah, so some of the most common obstacles are number one, just kind of wrapping your mind around the diagnosis and looking at, kind of thinking about what the future will look like. That part is difficult because I can't predict how someone will do in five years or 10 years. Dr. Williams (07:15): But I think that oftentimes through education, and for many, through things like mental health services, counseling, et cetera. As they begin to kind of adapt to that diagnosis and maybe what that new normal is, then we can move forward with looking at treatment options and trying to make the best of the time that we have, and the function that we have. Dr. Williams (07:40): For some people it's difficult because they don't have any symptoms. They're like, well, why should I do treatment because I'm fine? Then for some people, it's just kind of the devastation of maybe having some type of impairment where they didn't recover from that first symptom, and now they're having to adjust their lifestyle or career, et cetera. Lots of psychological issues are difficult in the beginning, and at transition periods during the journey with MS. Dr. Williams (08:07): I focus a lot on mental health, stress reduction, and psychological services for those that need them. If some need medication, then we talk about that as well. I think the other obstacle, especially in a global pandemic or endemic or whatever we are calling it at the moment is isolation. That part is very difficult. For some of my patients who maybe have mobility problems or mobility impairment, and maybe different types of meetings and functions in the MS community, where it was their way of interacting with the world and now we're not able to do that. Dr. Williams (08:44): The isolation has been difficult. We deal, again, a lot with mental health services, looking at ways people can get involved virtually. Trying to troubleshoot to find ways to bring people back into the community, even though they can't physically be there. Geoff Allix (09:02): Okay. Overcoming MS, as you might know, is an evidence-based lifestyle modification charity. The tagline is whatever it takes, but with an evidence basis. It's looking at what evidence is out there scientifically, founded by a professor. Yeah, it's very much looking at that evidence base and bringing lifestyle into that. Trying to have better health and MS management through every available method. What's your take on how lifestyle factors fit into MS treatment? Dr. Williams (09:41): It's huge. Lifestyle factors play a huge part in an MS treatment plan. When we talk about, or when I talk with my patients about things like medications, I don't talk about those on an island without talking about the other things that they need to do. My motto is that medication plays a part, but you play a part. There's no medication that gets rid of the part you play in improving your overall health. Dr. Williams (10:11): There are studies that suggest, for instance, exercise can do things like boost mood, also can help with multiple MS symptoms like spasticity, like depression, like constipation. We talk about the evidence, and we talk about all the different ways that these things like exercise and diet can help aside from just helping your cardiovascular health. Dr. Williams (10:38): I think the other thing that there's a lot of attention being brought to is really the effects of stress. There's not a lot of research that we have that directly links stress to MS exacerbations like brain lesions, but certainly we know intuitively that stress can worsen a person's function overall, whether it's with MS or any other chronic disease. Dr. Williams (11:00): We spend a lot of time also focused on stress reduction, mindfulness, meditation, things that increase their overall health practices that will help people to live a less stressed life overall. I think there is more evidence emerging, but we still have a lot of work to do where lifestyle modification is concerned in terms of having hard scientific evidence that supports it. Geoff Allix (11:28): I think if you ask anyone with MS about stress, then we all know that stress is a factor because some things are really slow to make changes. I remember early on George Jelinek, who's behind Overcoming MS, said, it's like turning around an oil tanker. Making some of these changes is very slow to have an effect. You may not notice say anything for six months, but it's slow. But stress is the one I think anyone with MS will tell you, if you get stressed, then those symptoms come back really fast, but they go away fast if you can calm yourself down, and you feel better. Geoff Allix (12:12): There is a definite ... All these things, it's like, oh, have we done double blind placebo trials and all these things? But actually people with MS say, yeah, they know that stress is- Dr. Williams (12:23): Absolutely. Geoff Allix (12:23): ... Is one of those factors. Really quickly ... If I get really stressed out, then suddenly I'm limping all over the place. I know. I can tell I'm stressed because my body doesn't work fully. Dr. Williams (12:37): Yeah. I have a lot of patients that report that as well. Again, that's why it's so important for us to continue to discuss lifestyle modification, to talk to people about it. But also for those of us in the scientific community to really kind of put our money where our mouth is and look at some of this research so we can better understand it on a biologic basis as well. Geoff Allix (12:56): Yeah, because that's the thing. I'm saying it affects me instantly, but I can solve it instantly by calming down, but equally, is it causing long-term damage or is it literally instant and it's gone? There is obviously ... Dr. Williams (13:10): There's a lot we need to understand. Geoff Allix (13:12): Yeah. The content theme for the month is advocacy. A lot about patient advocacy and so on. In that spirit, in your experience as an MS specialist, what strategies could people with MS use to discuss lifestyle factors specifically, and lifestyle modification with their healthcare professionals, because it's a very different thing depending on who your MS specialist is, and it depends where you are geographically. Geoff Allix (13:45): I think certainly in the UK, you probably have less choice about who the person is, but having said that, then it's based on how much you could afford. Different healthcare regimes are going to be different in different places. I'd say actually in the UK as well, we have less specialists. It's unusual to have an MS specialist. You would normally have a general neurologist. Maybe only if you're in a really big city. I know in London they have a few, but it's rare in the UK to have that specialist. Geoff Allix (14:20): Some of them are very old-fashioned. I know that there are some people, and they literally are told, take the pill, have the injection, whatever it might be. Nothing else you can do. Then there are more forward-thinking people who are saying, actually no, a healthy diet and lifestyle will benefit you. How would you suggest people discuss introducing lifestyle factors, whether that be diet, exercise, or mindfulness with their healthcare professional? Dr. Williams (14:53): I think the first thing is to recognize that it is okay to have an agenda of things that you'd like to discuss when you see your neurologist, whether it's an MS specialist or general neurologist, because oftentimes you get in that visit, the doctor has things they want to cover. I very much encourage people to write down the things that are very important to you to discuss at that visit. Maybe write down like your top two, because if you have 20, you're probably not going to get through 20. Dr. Williams (15:23): But if lifestyle modification is at the top of that list and they say, hello, Mr. so-and-so, how are you doing?...
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Coffee Break #29 with Linda Boueke | S4E49 bonus
03/28/2022
Coffee Break #29 with Linda Boueke | S4E49 bonus
Welcome to Living Well with MS Coffee Break #29, where we are pleased to welcome Linda Boueke 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 . We hope you enjoy this episode’s conversation with Linda, coming to you straight from Hamburg, Germany. 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 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 is incredibly thankful to have found OMS so early. Questions: Linda, 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. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS Program? How was that experience for you? Why did you decide to start following it? What are some of the challenges you faced at first in adopting the OMS Program, and how did you overcome them? When did you first start to see any kind of positive results in following the OMS Program, and what were these? You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Hamburg. Can you talk to us about the OMS Circles experience, and what that’s meant to you? I also understand that you conduct seminars about OMS principles in Germany, trying to raise awareness about the positive aspects of lifestyle change for people with MS. How’s that going and what motivated you to start that endeavor? One of your guiding principles is the concept of flow. Can you tell us a little about that and what it means to you? 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? Linda, 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Three Interesting Facts About Linda (in her own words): I find it so important to spread the word about the importance of lifestyle and the OMS 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 OMS provides evidence-based hope. I wish for many others to find the strength in themselves to change their lives for the better by adopting the OMS lifestyle and to live a full and healthy life for many years. To prevent depression, which is common in people with MS, I find it most important to listen to your 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. I love my new eating habits though it was hard to change my diet at the beginning. Even if got rid of MS today, I would not go back to the way I used to eat. I was thrilled to learn about the Concept of Flow, which I encountered during my 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 my life, that means that I try to do what I 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”. Linda’s Links: Linda loves this healthy . Linda also loves these two vegan pasta recipes from and . Check out Linda’s artwork on her . Hear Linda’s vocal talents on her and You can also check out her . Linda does Zumba at home for exercise by watching these uplifting YouTube videos by . Coming up on our next episode: On the next episode of Living Well with MS, premiering April 6, 2022, meet , a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who serves as the Founder & CEO of the Joi Life Wellness Group Multiple Sclerosis Center outside of Atlanta, Georgia. She’ll tap into her deep well of medical experience to provide a practical roadmap on introducing lifestyle change to your healthcare professional. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 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 . S4E49b Transcript Coffee Break #29 with Linda Boueke 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 . 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 . 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...
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Exercise Tips for All Abilities | S4E49
03/23/2022
Exercise Tips for All Abilities | S4E49
Bio: Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother, who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on his mother. He’s the creator of , which has been completed by over 1,000 people with MS since its launch in 2018. Questions: Welcome to the program, Dom Thorpe, and thanks so much for joining us on Living Well with MS. Let’s dive right in. Your background is quite interesting. Can you tell us a little bit about how you became a fitness trainer? What was that path like? What are you doing now in the fitness space? Tell us about your online fitness enterprise. Through Dom Thorpe Online Fitness, you seem to have a target focus on people with limitations in their ability to perform traditional exercise. How did you decide on this focus? One of your target audiences are people with MS. Do you have any personal connection to MS? As you may know, the charity behind this podcast – Overcoming MS – promotes evidence-based lifestyle modification for better health and MS management. One of these factors is exercise. What’s your take on how improving lifestyle factors such as exercise and movement may correlate to improvements in the physical symptoms of MS? Can you break down the key elements of your fitness program and how they apply to people with MS? Tell us a bit about your MS Warrior Program? And does it suit all levels of ability? If you could distill your fitness expertise into 3 key tips for people with MS of any ability who want to develop some sort of regular exercise or movement regimen, what might these be? Thanks so much for being our guest on Living Well with MS, Dom. We are thrilled to learn about the amazing work you’re doing to encourage fitness to people with MS at all levels of ability. Links: Learn more about Dom’s fitness training programs, including the MS Warrior Program, Access free MS Fitness Essentials Check out Dom’s work on and Coming up next: Join us for the next episode of Living Well with MS Coffee Break, our 29th installment, and travel to Hamburg, Germany, to meet Linda Boueke, the ambassador of its OMS Circle and one of the most dedicated members of the global OMS community. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E49 Transcript Exercise Tips for All Abilities Geoff Allix: Welcome to Living Well with MS. The podcast 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, Jeff Alex. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode, show notes for more information and useful links. You can find these on our [email protected]/podcast or on whichever podcast platform you use to tune into our program. 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, have questions or ideas to share, email us at [email protected] or you can reach out to me directly on Twitter at Jeff Alex. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform. Geoff Allix: So you never miss an episode and now let's meet our guest for this episode. Welcome to the latest episode of the Living Well with MS podcast. This week, we're talking about exercise tips for all abilities with Dom Thorpe. Dom Thorpe has been working with MS patients to help improve their lives through health and fitness coaching since 2008. He was raised by his mother who had MS for as long as he can remember and has made helping people with MS his career choice after seeing the effects MS had on her. He's a creator of the MS Warrior program, which has been completed by over 1,000 people with MS since his launch in 2018. So welcome to the program Dom, and thanks so much for joining us on Living Well with MS. Dom Thorpe: Thank you for having me. Geoff Allix: So to dive straight in, you've got quite an interesting background. Could you tell us a bit about how you became a fitness trainer and what was your path to becoming a fitness trainer? Dom Thorpe: So the fitness thing happened a bit by accident actually, because I came to London, I say came, I'm not there anymore. I've just moved out. But I arrived in London in 2000 to do university where my degree was an engineering design type thing. But my original goal was to design sports footwear. And so like with trainers and things like that, like Nike and those kind of things, but because of that, there were various units in my course that were sports specific. So they lumped us in with the sports science students and occasional lectures here and there. And so I think that was where I started learning a bit about fitness, but one of my jobs to keep me afloat throughout the university days and pay for my beer money, I suppose, was working in the gym. Dom Thorpe: And by the end of university, I think I established, I probably wasn't a great designer, but quite enjoyed the fitness industry. And so I moved from a part-time position into a full-time role, and it went from there really, but as a manager, and I don't know, if you want me to expand upon the [inaudible 00:03:21] at this stage in terms of how that went into my career, but there was a leak from gym management to wanting to run a disability specific fitness company. Geoff Allix: Okay. We'll get on to that in a bit, but that relates to what you're doing right now. So what are you doing now in the fitness space and what's your online fitness enterprise now? Dom Thorpe: Through a massive stroke of luck, I had moved entirely online actually just a few months before coronavirus actually hit or struck. So I'd been doing prior to that face-to-face personal training, just traveling around London, visiting clients with all sorts of disabilities, but the majority of those clients would be people with MS because they could see the backstory of me and my mom having MS, which was what led me into this niche, if you like. So that was where a lot of my experience came from seeing clients face to face, but the knowledge accelerated massively when I started reaching out to an online audience and speaking to a lot more people with MS. And that enabled me to launch what was my first program for people with MS, which is the MS Warrior program. Dom Thorpe: And it all coincided as a bit of a fluke, completely random stuff happening, right? I had a client who had no physical limitations at all. He was just somebody that met me from word of mouth. And I trained him for a number of years and then he stopped training. And then he called me back a few years later and said, "Oh, my wife would like to also do a bit of this exercise." And so I was training them both. And I said, "Oh, Jen, what are you up to these days knowing that she'd previously worked in charities." And she said, "Oh, I'm now at the MS society." And I was like, "Oh right, interesting." Because that's what I do with a lot of my clients. And she was like, all right, interesting. Dom Thorpe: And again, another massive fluke at that time. They were looking for a fitness instructor to present and deliver their online fitness videos. And she said, let me speak to so and so, and I wonder if we can get you in. And within a couple of weeks, they'd brought me in. We were filming in the same studios as Dragon's Den, or Shark Tank if you are from the US, filming the fitness videos and then they launched them. And I think that again helped expand people's awareness of me. And yeah, everything's online now. I don't do any face-to-face anymore. And the MS Warrior program is one of them, but they also offer a program called the Custom Fit program, which is a more customized one-to-one coaching approach as well. But again, done remotely. So yeah. Geoff Allix: Heads up Living Well with MS listeners. This month is movement March at overcoming MS. Keep an eye on our social media channels for tips, videos, and ideas on how to keep your body moving this month. And on a related note, have you joined any of our live movement sessions? Overcoming MS has partnered with Dr. Gretchen Hawley to offer our community live movement classes. Find out more on our social media channels and website, but more importantly, make sure you sign up, so you don't miss out. Geoff Allix: And so what is the connection with your mom then? So you said your mom had MS? Dom Thorpe: So yeah, my mum had MS as far back as I can remember. And she was one of these invisible illness MS people, if you like initially. Right up from when I was a teenager, I just knew she had MS, but to me, it didn't really look like anything was going on. So I was quite naive in that respect, didn't know a lot about it. Until I came away, left home and at that point, her physical condition declined quite rapidly. And within the space of about six years, she'd gone from walking seemingly fine to being in bed, unable to really move herself very much at all. So, yeah. And that was the point I'd visited her with my granddad and seen her in this state and recommended that the hospital come and collect her. Dom Thorpe: Because I thought this was not a way that someone should be able to live, she was just having a carer coming three times a day, taking her to the toilet, feeding her and stuff. And I'd never seen this before. So I just thought this is not acceptable and took her to hospital, left her there that night. And the next morning got a phone call from them saying that they thought she had had a stroke, but after lots of tests over many, many months they established that it was actually a massive relapse, which had caused some brain damage through lack of oxygen to the brain. And from that point on, she spent the next six years in her home, basically motionless being fed through a tube and we didn't really know if you could communicate with her. Dom Thorpe: We would visit, we would say, hello, awkwardly try and talk to her and tell her what's going on. But with no idea of can she hear me? Can she understand? There were occasional reflex actions and stuff. And eventually I lost her in 2012, by which point I'd already stumbled across the fitness for disabilities course that I didn't even know existed. I remember thinking at the time when I saw the course, I was thinking, well, disabled people can't exercise, what's this all about? But I went on the course, and it completely opened my eyes. It kind of blew my mind a bit. And I just thought this is something I need to do, need to get into, and that was when I was… Geoff Allix: And so she wasn't, your mother wasn't particularly encouraged to exercise when she was [crosstalk 00:09:31]. Dom Thorpe: No. That was it. As we discussed earlier back then the advice was to save your energy and not do any exercise for people with MS. She'd gone to, I think like a little local aerobics class one time or something. Now you must understand my mum was someone that had never exercised. So for her just a complete lack of understanding of what it feels like to exercise. I don't know, this a hundred percent sure, but I think what she was experiencing was like the typical muscle pain that you get with lactic acid buildup in the muscles. So the burning sensation and stuff, but because it was a numb, familiar feeling, she put it down to MS, which is something that we see quite a lot. And I'm sure you are aware of it, the question, is it MS or is it something else? And it's very easy to say, "Ah, you know, that must be the MS." So she tried it once and never did it again after that. Exercise wasn't something that she was doing. Geoff Allix: Yeah, it is a difficult one I am familiar with exercise. I'm not somebody who went to the gym a lot at university. In fact, my son is looking at universities now and is looking at the same. I went to Leeds University and he's asking about the gym there. And I had to admit that I'd never actually been in the gym at Leeds University. I had been rock climbing and running and other things. I'm familiar with exercise, but I have to say if you've got MS and it is different for everyone, but personally, certainly if I work really hard on exercise, then it will affect my balance a bit and my walking a bit more so than prior to that, where I just feel that burn and I'd be fine, but my legs would burn a bit, my arms would burn a bit. It is worse now, but that's not a relapse. That's something that you get over in a couple of hours. Geoff Allix: And I think maybe that's where historically my father wasn't encouraged to exercise that they were thinking it was sort of something that was starting out, maybe starting a relapse, but it's not, it's just your recovery is certainly worse. Dom Thorpe: Well I think that's probably to do with, you've heard of Utah syndrome? Geoff Allix: Yes. Dom Thorpe: So when you're exercising, of course the body temperature or the temperature of the core and the neurological system increases, which can exacerbate symptoms, generally legs, and things like that. The thing that I try and remind my clients and anyone that I speak to with MS is that this is, it's temporary and you are not doing any further damage. And I think that's the important thing. When someone tries that and they're like, "Oh, all of a sudden I came in there and I could walk and now I'm trying to leave the gym and I can't walk." And I've spoken to clients that have gone to gym and then had to be carried out by the staff. Because the legs, which I can imagine that must scare the hell out of you if you don't know what to expect or you are going to come away a few hours later and be back to what is your current normal, I suppose. Quite scary. Geoff Allix: So OMS promotes evidence-based lifestyle modification for improving health with MS. And one of the pillars of that is exercise. So what's your belief on how increasing exercise and movement might actually correlate to improvements in MS symptoms? Do you see improvements in clients? Dom Thorpe: It kind of goes, if I was to do a broad summary, I might say that we see improvements in how people feel symptoms and things like that. I would often put that down more to the nutrition side of things. But one of the things that we know taking MS out of the equation is, we know if exercise is done properly, structured exercise, not just like walking the dog or things like that, structured training sessions with the goal of increasing your physical ability. We know people can improve their balance, get stronger, get more supple, faster, anything like that. And although there's a massive lack of research into the effects of exercise and we're starting to see more of the effects of exercise for people with MS. The way I come from is, we apply logic. Dom Thorpe: There's no, we don't have any research suggesting that the typical thing or the common principles of exercise work any different for people with MS. We know you need to modify exercise. We know you need to be aware of things that we've just discussed, like the aftereffects of a training session, which happened for some people, not everybody, but the fundamental principles and this is one of the approaches that I take. We've got to remember that for more or less everybody whatever your condition, disability, chronic illness, the basic principles of fitness remain the same. To increase strength, you have to load the body with increased weights or resistance to improve cardiovascular fitness. You have to get your heart rate up to improve endurance, it's about doing things for longer. And the same principles apply to people with MS. In terms of scientific evidence, I've seen this time to time again with people I've worked with. We see people finishing their programs stronger than when they started or with better balance. Dom Thorpe: But personally, I think there needs to be a lot more time, money, or effort put into research in the subject, because there's a lot we don't know about how those methodologies might differ or need to vary. Geoff Allix: It's a difficult one, isn't it? Because the drug companies are obviously funding most of the research, because there's a financial benefit. Dom Thorpe: They're making some money back there. Geoff Allix: If Nike got in involved maybe in MS. Dom Thorpe: Well that's it. And the bottom line is what you get is very small studies done by people like me or like if one of the MS charities gets a smaller amount of funding that can be allocated towards this. There is hope for studies, but there are not enough people and probably not done for a long enough duration, so the data's not great and it's difficult or not even ethical to do like a sort of double-blind controlled test where you can say, right, you're not allowed to exercise, and you are. And we think the people that are going to be better off, but [crosstalk 00:16:27]. Geoff Allix: [inaudible 00:16:27] is it the people who are not exercising. Dom Thorpe: You can't exercise without realizing it. I think that to some degree, you're going to get some sort of placebo benefits of, "Oh, I feel so much better." And I think that happens as well, which is no bad thing. If you are doing exercise and you feel better, whether that's placebo effect or genuinely being better, it shouldn't make a huge amount of difference here. If something's making me feel better, it's good. But I know from working with clients that people will get stronger. And I think this is as much down to nutrition is the exercise. They will feel more energy and less fatigued if they apply the right sort of principles. Geoff Allix: And could you tell us a bit about the key elements of your MS Warrior program? Dom Thorpe: So the MS Warrior program is sort of the lower cost one, which is, it's like a DIY follow along. So it requires you having some element of motivation to stick to it. But what I give people is a series of home workout videos for those people that prefer working out at home, but also gym alternatives for those that do have a gym membership and they will vary throughout. And the idea is that the exercises become more advanced throughout the 12 weeks of the program on the assumption that people will have improved physically, they will be stronger or have better balance and capable of slightly more than they were at the start. So I give them nutrition guidance as well. And lot of that is more, a bit more focused on the weight loss side of thought. Dom Thorpe: Because I see a lot of people coming in that have gained weight as a result of their MS, largely due to a drop in activity levels. They don't really know how to address this. So I try and give them tips on that. But again, I think this is where we probably see eye to eye with OMS and my stuff is the kind of the whole foods approach and trying to make sure that you're getting plenty of fruit and vegetables into your diet. Because they...
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Ask Jack #6 | S4E48 bonus
03/09/2022
Ask Jack #6 | S4E48 bonus
Welcome to the second season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer answering food and cooking questions from our community that inform their healthy OMS lifestyle. Check out the show notes below that dig deeper into this episode’s topic. You can submit your questions for Jack anytime by emailing them to . Introduction The Living Well with MS family of podcasts is happy to welcome back Ask Jack for its second season! This episode’s topic: Replacing Eggs and Chocolate. Jack has meticulously curated several questions around this topic, and its one even non-chefs can relate to. I mean, eggs and chocolate are the building blocks of so many yummy foods and recipes. But we know from our research that they’re not particularly good for people with MS. So, let’s find out about healthy alternatives that can stand in without standing out. Questions Jack, do you have any tips on making a Tofu Scramble? I've heard they are simple to make but I've never made one. How do you replace eggs in cake recipes? Is there a single and simple substitution one can use? On a related note, one of our listeners wanted to know how much egg white is needed to replace a whole egg. Any thoughts, Jack? Courtney from Portland, Oregon, wanted to know if there is a healthy substitute for egg replacers like Just Egg, which is the closest thing she’s found to scrambled eggs. However, she’s concerned about some problematic ingredients in it, like a whole bunch of canola oil, and the high temperatures required to cook it. Any ideas, Jack? Is it possible to make an OMS-friendly custard? I would really love to know how to make a quiche and custard dessert for my family. Can you explain how to use aquafaba? I have a lot of chocolate cravings and I'm looking for OMS-friendly ways to satisfy them. Do you have any recommendations? Can I replace chocolate in a recipe with cacao/cocoa? How? On a related note, is there a difference, seemingly apart from the price, between cocoa powder and cacao powder? Can both be used for baking? Are there any interesting chocolate substitutions on the market I can use to make desserts? And here’s a question from Fran in New Zealand: can we use cacao nibs? Finally, Jack, our whole community is excited about the imminent launch of the latest OMS book, ‘The Overcoming Multiple Sclerosis Handbook’. In fact, our next Living Well with MS episode is dedicated to it, and features two of the book’s co-editors, Professor George Jelinek and Associate Professor Sandra Neate. But the OMS Handbook has numerous contributing editors, yourself among them. What can you tell us about the project and your role in it? About Jack McNulty: Jack McNulty has been involved in food and cooking most of his life. He’s walked many paths during his culinary journey, including transforming himself from an interested amateur ‘foodie’ to a professional chef with classical training. He has worked for talented and knowledgeable chefs in high-end restaurants in Switzerland, Italy, and France. Jack has operated his own catering business and cooking school, while also finding time to write about cooking. He is currently operating his own subscription-based providing instruction and recipes supporting a vegan lifestyle. Jack has followed the OMS lifestyle since 2009. He has actively worked on providing recipes and information to the OMS website, was the contributing editor to the , and authored the Eat Well chapter in the . Jack’s Links: Visit Jack’s website for mouth-watering OMS-compliant vegan recipes, ingredient information, and to learn useful vegan cooking techniques. Be sure to check out Jack’s weekly international newsletter – – written with the aim to inspire people to cook healthy plant-based food. Jack’s social media links are all here: . Coming up on our next episode: On March 23, meet Dom Thorpe and explore his exercise tips for all abilities. Dom has been helping people with MS to improve their lives through health and fitness coaching since 2008, and he’s the creator of , which has been completed by over 1,000 people with MS since its launch in 2018. So tune in on March 23 and get moving with Dom! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E48b Transcript Ask Jack #6 Geoff Allix (Intro): (2s): Hi, I'm Geoff Allix, host of Living Well with MS family of podcasts from Overcoming MS. Jack McNulty (Intro): (8s): Hey everyone, Jack McNulty here. Welcome to another new and exciting season of Ask Jack, a special Living Well with MS podcast Series. I'm excited and honored to answer food and cooking related questions from you, the Overcoming MS community. Geoff Allix (Intro): (23s): To submit a question for future episodes of Ask Jack, please email us at . That's . Please check out this episode show notes at and dig into additional information and links on what we'll cover. And now let's rev up our culinary curiosity and Ask Jack. Geoff Allix (46s): The Living Well with MS podcast family is happy to welcome back Ask Jack for its second season. This episode's topic is replacing eggs and chocolate. Jack has meticulously curated several questions around this topic and it's one even non-chefs can relate to. I mean, eggs and chocolate are the building blocks for so many yummy foods and recipes. But we know from our research, they're not particularly good for people with MS. So, let's find out about healthy alternatives that can stand in without standing out. So welcome back Jack and happy 2022. How's the year started for you? Jack McNulty (1m 23s): Great so far, Geoff. It's just fantastic to be back for another year, doing the Ask Jack podcast with you. There's a lot happening in the world of plant-based food and cooking. And as a chef, it's just incredibly exciting. It's a good time to be involved in that aspect of the world. And looking forward to another year. Geoff Allix (1m 44s): We have had some changes over the last couple of years with the pandemic. It's become normalized. You know, I live in quite small town, but we still have a choice of restaurants that are plant based. And that certainly wouldn't have been the case five years ago. Jack McNulty (2m 3s): Yeah, most definitely. I feel exactly the same way living in Switzerland, where it previously was very difficult to find anything remotely close to plant based. And now there's quite a few choices available. So, that's a good thing. Geoff Allix (2m 22s): You are in the home of chocolate. Jack McNulty (2m 26s): Chocolate, and cheese, and eggs. And yeah. Everything non-OMS. Geoff Allix (2m 32s): So, to go through the questions then. Starting with eggs. Do you have any tips on making a tofu scramble? And the question is I've heard that they are simple to make, but I've never made one. But I'd love to hear your tips on making tofu scramble. Jack McNulty (2m 55s): Yeah, well, I definitely have some tips. Like you, I make them fairly regularly myself. It's quite versatile, so you can do a number of different things with it. What I like to do, for the first thing I do is and I think it's really important for successful tofu scramble is beginning with the selecting the right kind of tofu, so that, you know, they can go from really firm tofu to the so called silken tofu. Very soft, almost custardy like. The one that works the best for tofu scramble, there's something in between. Something on the softer side, not a silken tofu but soft, where you can easily crumble it with your fingers. Jack McNulty (3m 38s): And so, that's exactly how I started. I just get the tofu out of the package, drain it from all this liquid, crumble it into a bowl, and then I add in the other flavor ingredients right into a bowl and just sort of mix it all together with my fingers. So, what I use is, I tend to use a tablespoon of Dijon style mustard, I use a little bit of Turmeric. I'm careful with not using too much because I don't want the flavor there, but I want the color. It kind of adds to the whole impression of what you're trying to do. I add a little bit of ground cumin as well but just a little tiny bit. Jack McNulty (4m 18s): I think it gives a nice background flavor and a good squeeze of lemon juice along with the seasoning, kala namak, a black salt. And a lot of people might be familiar with it already. But it has a sort of sulfur like flavor associated with it. Kind of reminds you of eggs certainly when you smell it, it does, and it works well within a tofu scramble. So, I get out my pan. I use a stainless-steel pan, but you can do this with nonstick as well, and make sure the pan is hot, not scorching hot. There's nothing in the pan, but just over medium heat. Jack McNulty (5m 1s): Get it nice and hot. I add a bit of water, say a quarter cup of water, to the pan, it should immediately sizzle up. And then I add all the contents that were in the bowl with the tofu into the pan. And I just begin, I use a silicone sort of spatula, and I just sort of smash everything together as the water mixes in with the tofu. And I cook it over medium heat for about three to five minutes. Now, sometimes I add additional water as I go along. I don't want it dry. I want it a little bit more on the moist side. And that sort of starts to begin to break down and take on a look very much like scrambled eggs at that point. Jack McNulty (5m 47s): I just remove it from the heat after that period of time. Now, you can add additional flavoring at this point. Nutritional yeast is something I usually go with and gives it a little bit of a cheesy flavor. But also, you could whip some spinach into it, have cherry tomatoes in there, maybe some sliced spring onions, things like this. You can just sort of let your imagination run free and create sort of a nice little dish. It looks very similar to scrambled eggs. Geoff Allix (6m 20s): Yeah, I know very similar. I think the key for me was the kala namak, which wasn't the easiest thing to find. I did find it from a very large online retailer taking over the world. So, it is available if you search for it. And you know you've got the right stuff because it does smell of eggs. Jack McNulty (6m 40s): Yeah. Geoff Allix (6m 38s): And I, yeah, once -- and you're right. The turmeric, if you overdo it, it takes a turmeric flavor but actually you know scrambled eggs doesn't taste like turmeric it is just that yellow color. Jack McNulty (6m 47s): Yeah. Geoff Allix (6m 47s): And then really that's just a base and then you can think, “Okay, I'll add some mushrooms, or add some herbs as you would with any scrambled eggs.” One thing I would say actually is that friend like the scramble. They're not people with MS. But they don't really like scrambled eggs. And so, they do it without kala namak. And they like it, but you don't have to. We're trying to make it as similar as possible to scrambled eggs. Jack McNulty (7m 11s): Yeah, yeah. Geoff Allix (7m 12s): But actually, you could make it for months and some people think it’s better than scrambled eggs because they're not really keen on the eggy flavor. And so, you don't need to. So, okay. Kala namak is a salt so you can use normal regular salt and then use different flavors, and actually make something that you may prefer. And I think once you've got that base and you can start messing about with say, "Okay, what about a bit more kala namak, bit less, or adding herbs? Or you know…” Jack McNulty (7m 45s): Yeah. Adding curry for instance. Geoff Allix (7m 50s): Yeah. Jack McNulty (7m 50s): You know, there's a lot of different ways you can take it at this point. You can make it a little bit more Mexican, and then you have some breakfast tacos or breakfast burritos, things like that that would work really fine. I think the common mistake that most people make is they choose the tofu that's too hard. They don't use enough moisture as they're cooking the tofu until it gets a little bit rubbery if you don't use enough moisture and really break it down with the moisture and go a little bit too light on the seasoning. Tofu is like a sponge. It will take on a lot of flavor. And I think, you know, you shouldn't be afraid to season it well. Geoff Allix (8m 34s): Okay, and I think, yeah, with a bit of toasted sourdough. Perfect. Perfect. Jack McNulty (8m 43s): Exactly. Geoff Allix (8m 44s): And then you can go all sorts of ways with it as well. Like there's recipes for making fake bacon, liquid smoke, and things like slices of aubergine. Jack McNulty (8m 58s): Yeah. Geoff Allix (8m 58s): And you can make a quick breakfast with tomatoes, mushrooms, tofu, sourdough. You know you can make it really healthy. And because a traditional English Breakfast is pretty much one of the unhealthiest meals you can probably eat once you get to the blood pudding, Jack McNulty (9m 18s): <inaudible> Geoff Allix (9m 20s): The sausages, fried bacon, fried eggs. Jack McNulty (9m 25s): Yeah, that’s right. Geoff Allix (9m 25s): But you can make it really healthy, nutritious. Jack McNulty (9m 31s): You can also have them you know, as a light lunch. Tofu scramble as a light lunch, even an early light dinner in the summer works fine. So, you know, you can experiment quite a lot with that technique and deliver some really powerfully flavorful food. Geoff Allix (9m 53s): It kala namak. Is it K-A-L-A-N-A-M-A-K? Is that right? Jack McNulty (9m 55s): That’s correct. Geoff Allix (9m 56s): Yeah, that's the thing to look for. You search for that. I'd say that's the key ingredient that tips it into something that tastes like egg. Jack McNulty (10m 7s): Yeah, I'll make sure I throw a link on the show notes for that so people can just access it from the show notes and on the website. Geoff Allix (10m 21s): Okay. And so, talking about eggs, how would you replace eggs in a cake recipe? Is there a simple direct substitution you can use for eggs and cakes? Jack McNulty (10m 32s): Um, well, that's an interesting question. I think, let me just start with why I can't think of another ingredient with so many culinary uses as an egg, which is why there really is no single substitution in recipes for eggs. And I think a successful replacement for an egg whether it's in baking or any other kind of cooking, it requires a basic understanding of what role is that egg playing in the recipe? So, before answering that question, let's just review quickly what an egg does in terms of a recipe. Jack McNulty (11m 15s): So, an egg will provide structure. So, the protein once heat is applied will start to coagulate. And it works very similar to gluten in that sense, so it gives anything a little bit of structure. And that's what you're looking for, which is a certain chewiness as well as providing structure, especially in high ratio, baked goods, ones that have a lot of sugar or fat, which tend to make the gluten very weak. An egg will strengthen that and bring it back into a little bit more of a structure and give it a little bit more bite. So, that's one thing an egg will do. Second thing is it actually works as a shortening as well, especially if you're just using the egg yolk, which is where all the fat is in an egg. Jack McNulty (12m 5s): And that egg yolk, the fat in the egg yolk will shorten the gluten strands and make whatever you're baking a little bit softer or have a sort of a texture similar to a sponge cake and going in that sort of direction. Eggs also emulsify and bind fats and liquids together. So, think in terms of making some kind of custard or something like this. This is where an egg is very useful in certain types of cooking. Leavening, giving a baked good rise. So that's usually done through the egg white, but just a whipped egg will do the same sort of thing. Jack McNulty (12m 47s): And it is basically just incorporating bubbles into the mix that expand when it's heated until you get that nice little rise. Eggs also provide moisture. Most of an egg is just water. I think it's around 65 to 70% of the whole egg is just water. And so, it's going to add a lot of moisture within a cake or other baked goods. Of course, flavor. We talked a little bit about that sulfur like flavor from the kala namak. That comes from cooked egg whites, whereas cooked egg yolks are going to give a sort of richness and that sort of smooth texture on the tongue. Jack McNulty (13m 27s): It doesn't add a lot of flavor on the egg yolk part, but just more of a texture sort of thing. And then color and glazing. So, eggs are often used to give that sort of shiny look to any sort of bread or baked good, like a pie dough or something of that sense. So back to the original question about replacing eggs and a cake recipe. And I'm afraid the answer is ultimately, you know, what do you want the cake to be once it's baked? So, I'll give the Swiss answer, it depends. Jack McNulty (14m 12s): It's not as simple as adding a fruit puree to replace the eggs, or using a flax egg, or using baking soda with an acidified nondairy milk or something of this nature. Each of these kinds of solutions contribute something different. So, it's moisture binding leavening. And so, I think ultimately, the answer is it's combining several techniques to achieve whatever it is you're trying to achieve or recreate in a recipe. And that may involve some experimentation, playing around with different formulas. But it's also fun. It's a great way to learn about ingredients, and how they work in a recipe. Jack McNulty (14m 57s): So, I sort of encourage that. The key is understanding what the basic choices for each role are, which I'll include in the show notes so people can refer to that. Geoff Allix (15m 6s): So on the OMS diet, egg whites are approved, aren’t they? You can use egg whites? Jack McNulty (15m 11s): That's right. Geoff Allix (15m 12s): And the egg white sounds like it does quite a lot of the action. And the roles of an egg are a distinct thing. So, there's the egg white and the egg yolk. Jack McNulty (15m 24s): That's right. Geoff Allix (15m 25s): We're using the egg white. It can actually do a lot of that binding, but it's not going to do the shortening side of it. Jack McNulty (15m 34s): That's right. There's no fat in an egg white. And that's why it's ultimately allowed on the OMS diet. There's some conflicting evidence out there in terms of, are there other things in the egg white, that might be harmful. But I think ultimately, the use of egg whites, depending on your view as to whether you want to use animal products at all. But ultimately, you know, using egg whites is fine in small amounts. Geoff Allix (16m 11s): And so, the egg, is there something that would replace the egg yolk action, specifically? Jack McNulty (16m 18s): Again, that would probably get a little bit more toward, what do you want to try to achieve? So, if we look at the structure of an egg yolk, basically, you're going to be looking at about 70% of it is water. So, I think, it's around, if I get my numbers correct, is...
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Living Life to the Fullest – A First Person POV of Living with MS | S4E48
02/23/2022
Living Life to the Fullest – A First Person POV of Living with MS | S4E48
Bio: Chris was diagnosed with MS in 2017, and that's when she really decided to live her life how she wanted to. It really drove home – with the spectrum of types and prognoses – that anything can truly happen in life… we never know. So soon after this huge upheaval to her life, she began to look at both what she had to do now (like eat healthier and exercise) and what she wanted to do. Chris reevaluated her life in every way, which was incredibly hard but so worth it. She started with the happiness she had suppressed for a long time. So many things have happened in the past four and a half years after diagnosis that she became a different person. She is still the same in some ways, of course – a crazy cat person and a Special Olympics volunteer for instance – but she has changed fundamentally. The way she views life, with a joy in the day to day and making sure those she loves know it, is now her core. Chris honestly can say that she is glad to be diagnosed with MS. As crazy as that sounds, it is true, because of all the epiphanies it has granted her. Questions: Welcome to the program Chris, and thanks so much for joining us on Living Well with MS. Our content theme for February is ‘sharing your story’, so in that spirit, can you tell us a bit about yourself and your life in Connecticut? Now let’s get some insight into your MS story: when were you diagnosed and how did you deal with the initial news? Do you have any tips or perspectives for people who are newly diagnosed? When did you discover Overcoming MS? And how has it impacted your life with MS? What were the main obstacles you faced in adopting the OMS lifestyle, and how did you deal with them? You have some personal experience with dealing with major life decisions and balancing these with their impacts on MS. In your case, your decision to come out about your sexuality. Can you tell us about that and how you balanced what must have been a stressful time with your need to stay calm and healthy? What advice would you give people with MS who are facing major life decisions or other stressful circumstances? What kinds of positive changes has your courage in making tough decisions summoned? How do you define “living life to the fullest”, especially from the perspective of someone with MS? Is there any other perspective on life and living it to the fullest that you can share with our audience that they may find helpful in giving them the final nudge of encouragement they need to take the leap on something daunting or scary? What else is on your bucket list for a full life? Links: Reach Chris’s blog on living despite the unknown Check out Chris on Chris recommends finding and joining your local for support Chris wants anyone in the USA who is LGBTQ+ and struggling to know that they can text or call The Trevor Project (which is a nonprofit and totally free) by texting START to 678-678 or calling 1-866-488-7386 Coming up next: Tune in on March 9 for the season premiere of Ask Jack, featuring the prodigious culinary talents of professional chef, writer, and OMSer answering food and cooking questions from our community that inform their healthy OMS lifestyle. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E48 Transcript Living Life to the Fullest: A First Person POV of Living with MS Geoff Allix (1s): Welcome to Living Well with MS, the podcast 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. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at or in whichever podcast platform you used to tune in to our program. 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. Geoff Allix (47s): Have questions or ideas to share? Email us at , or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. Joining us on this episode of the Living Well with the MS podcast is Chris Cerillo. Chris was diagnosed with MS in 2017 and that's when she really decided to live her life how she wanted to. It really drove her home with the spectrum of types and prognoses that anything can truly happen in life. We never know. Geoff Allix (1m 27s): Soon after this huge upheaval to her life, she began to look at both what she had to do now like eating healthier and exercising, and what she wanted to do. Chris reevaluated her life in every way, which was incredibly hard, but so worth it. She started with the happiness she had suppressed for a long time. So many things have happened in the past four and a half years after diagnosis that she became a different person. She is still the same in some ways, of course, a crazy cat person and a Special Olympics volunteer for instance, but she has changed fundamentally, the way she views life with joy in the day to day and making sure those she loves know it and it's now her core. Chris honestly can say that she is glad to be diagnosed with MS. Geoff Allix (2m 9s): As crazy as that sounds, it's true because of all the epiphanies it has granted her. Welcome to the program, Chris, and thank you so much for joining us on Living Well with MS. Chris Cerillo (2m 21s): Thank you for having me. Geoff Allix (2m 23s): This month, the content theme is sharing your story. With that in mind, could you tell us a bit about yourself and your life in Connecticut? Chris Cerillo (2m 35s): Yes. Just for reference, Connecticut's a super tiny state in the United States. We're about, where I am, an hour and a half from Manhattan, but it's a great state. I really do like it a lot. I'm actually from upstate New York so that's also about an hour and a half from here. Geoff Allix (2m 53s): Upstate New York, is that the bit that's not the city of New York? Chris Cerillo (2m 58s): Right. Exactly, yes. Geoff Allix (2m 59s): Sorry. Chris Cerillo (3m 0s): Once you're out of the city, no, it's a huge state. It's complicated. I'm from Hudson Valley. I moved here in 2011 and, except for a stint in Manhattan during the pandemic, unfortunately, came back and I really like it here. It's pretty awesome. I work in fundraising at a nonprofit, and I love my work. A lot of people can't say that. I feel privileged to be able to say that, but, yes, I have a bunch of really awesome friends that are family to me here, which is great because most of my family actually lives down south now. They moved from upstate New York to North Carolina and Florida. Chris Cerillo (3m 43s): They text me regularly. It's 15 degrees here right now and they're texting and they're like, "It's 50 degrees where I am," but here, despite the cold, it is a pretty awesome city. Geoff Allix (3m 53s): When you say 15 degrees, you're talking Fahrenheit, aren't you? Chris Cerillo (3m 59s): Yes, Fahrenheit. Geoff Allix (3m 60s): That's way below zero. Okay. Chris Cerillo (4m 5s): Okay, yes. Sorry, 15 degrees Fahrenheit. I'm very American-centric. I have to work my way out of that. I volunteer a lot as much as I can around here with the special Olympics and doing dog rescue transports, really anything that I can do to help out and try to give back as much as possible. It's pretty great here. Geoff Allix (4m 31s): The Special Olympics, is that like the Paralympics? Chris Cerillo (4m 35s): Yes. Folks with special needs, autism, Downs Syndrome, things like that. Geoff Allix (4m 43s): Let's get some insight into the MS side of things, so when you were diagnosed, a bit about the diagnosis, and how you dealt with that. Chris Cerillo (4m 56s): Yes. I was diagnosed, I had to sit down and think about this actually in 2017, which sounds like so long ago. I guess, technically it was four and a half years. For the summer of 2017, before I was diagnosed, I had a bunch of weird different symptoms that just didn't amount to anything in particular. I had a lot of tests done. They're testing for lupus and this autoimmune disease. I had joint pain and I was just generally not feeling well. I had done it for a couple of years prior to the diagnosis and they just gave up. Chris Cerillo (5m 40s): They're like, "We don't know what's wrong with you," which I think happens a lot with autoimmune issues. In 2017, I started to feel like burning sensations in my body. I was like, "This is different and weird." In particular, I was washing the dishes one day and it felt like my hands are burning. I'm like, "Oh my God, like, why is this water so hot all of a sudden?" I stepped back and a few minutes later I'm still burning. I didn't realize it was burning from inside and not outside. I was like, "There's something going on here." To be a hundred percent honest, after so many years of knowing something was wrong and then coming to the realization of like, "This could actually be something. Chris Cerillo (6m 25s): This could be MS." Of course, you go on Google. You're going to Google whatever's happening like burning sensation, nerve issues. A few days after the dishwashing incident, I realized that my right eye wasn't seeing as well. I was like, "That's weird," but I have had glasses since I was nine. My eyes just, in general, don't see very well. That's not a huge problem. All of a sudden, it felt like there was a sunglass lens on my right eye. I also couldn't see. I couldn't see red very well and red was my favorite color, so everything was red around me. Chris Cerillo (7m 6s): I'm like, "Why is red super dark now? That's odd." I called my eye doctor. It was a weekend, so I left her a message. I think it was Sunday. I was at work Monday morning at 8:00 AM and I get a call. They're panicked and they're like, "You need to come in. You need to come in ASAP, leave work," so I did. I told my boss, and she was like, "Okay, yes. Sounds like an emergency." I go in and there's just a general panic happening, which I didn't realize until afterward that I think they thought that I was having a stroke because it's just suddenly like, "Why is her eye not working?" Chris Cerillo (7m 55s): We had a bunch of tests done while I was there. She told me at the end of the visit, "Yes, I think you need to see a neurologist." Because I had been Googling, I was like, "Do you think it's optic neuritis?" She's like, "I think so." I made the neurologist appointment for a week later and went in. He's still my neurologist actually. He's great. Shout out to Dr. Bonnie in New Haven. I went in and then a few days later got my MRI. He interpreted it and he told me, "Look, here are six different lesions on your brain. Chris Cerillo (8m 36s): It's pretty safe to say that this is MS." I think, originally, like I said, I was like, "Great, this is the diagnosis." I feel vindicated, so happy to have this answer. Then I did more thinking and more researching and realized that it's seen as one of the worst illnesses to have by the general public. I saw it compared to cancer. Cancer was the number one worst thing to happen, and MS was number two, which is scary when you're first diagnosed to read that. Geoff Allix (9m 14s): I didn't come across that and I'm quite glad that I didn't come across that. Chris Cerillo (9m 22s): You didn't? Yes. Maybe it's an American thing, I don't know. Geoff Allix (9m 23s): Cancer's going to go one, one way or the other, isn't it? I know people who are completely in the clear now and have been for a long time, but then equally, it could kill you very, very quickly. We're in that middle ground, aren't we? Yes, you can have it forever. Chris Cerillo (9m 42s): Anything could happen, yes. Geoff Allix (9m 43s): There's not going to be any like, "We've cleared you of this but equally, we're not going to give you three months to live." Chris Cerillo (9m 49s): Right. I guess if you're primary progressive, you could be in a much quicker timeframe of deterioration, but I think, in general, yes, I just heard a lot of people calling it the "Wheelchair disease" and "You're going to end up super disabled." I think, honestly, people talk about a wheelchair like it's the worst possible thing when in reality, lots of people live full lives in wheelchairs, with canes, or walking sticks. I learned all that later. I learned that perspective later on, but initially, yes, I was freaked out once I got over my happiness of a diagnosis. Geoff Allix (10m 32s): If other people are newly diagnosed, do you have any tips for them in how you deal with it? Chris Cerillo (10m 46s): Yes. I think you're going to run through a bunch of emotions at first. Maybe not the same way that I did, but it's definitely going to hit you. You have to let it hit you. Don't just hold on to extreme positivity. It's a real disease. It's something you're going to have to live with the rest of your life like you were saying, Geoff. Let that sink in. Feel your feelings, that’s was my therapist would say, but don't panic too much. Make sure that you do some research and look into OMS because honestly, Overcoming MS book has become my bible to live by. Chris Cerillo (11m 34s): Whenever I'm not feeling well, I'm like, "Let me check in and see what I should be adjusting here," but reading through it when I was first diagnosed was really, really important for me. I like to have some sort of control over my life, and I didn't feel like I had it until I found OMS. I was like, "I can. I can have power over what happens to me." Geoff Allix (11m 58s): Did you come across OMS straight away or was it a while after your diagnosis? Chris Cerillo (12m 4s): I was lucky. My partner at the time actually did this research even before I was diagnosed. When I was having burning sensations, he was looking it up and came across OMS, ordered the book, and everything. It was pretty soon after that I was reading it too and looking into it. I did it slowly because I was balancing that with all the millions of pamphlets that your neurologist gives you. I was like, "This medication and that medication." It was just too much information at once. It was great that he purchased that, and he gave me a synopsis of like, "Hey, you can do this to make sure you stay healthy." Chris Cerillo (12m 48s): Yes, I think my tip is to probably cut down on the panic. If you have people that are super close to you, you can ask them to do some research for you. Most people that are close to you want to help so if you give them a task, they're probably going to take it on. That'd be my main tip. Geoff Allix (13m 10s): Yes. I think if you try to do everything yourself then, and I think that's a natural thing to want to do everything and say, "Okay, I'm not going to let this affect me at all," but sometimes, you need to rely on people. People are happy to help, usually. Chris Cerillo (13m 34s): Right, <inaudible>. Geoff Allix (13m 34s): I think it's not unusual what you said about your partner actually introducing you to Overcoming MS. That was the case with me, and it has been with other guests as well. I think maybe that's because they want to do something. They're doing research because they can do that. They come across various things and then say, "Have you tried Overcoming MS? Have you heard of this?" Chris Cerillo (13m 60s): Yes, right. They want to help you and they don't know how. Geoff Allix (13m 60s): Then later on, maybe, like now, my wife knows what is helpful. We've been doing it for years, but first, it's like, "Well, I don't know how I can help you." That was a way she really did help me. Chris Cerillo (14m 23s): Yes, and then you learn what kind of things can help you and you can communicate that to your loved ones and be like, "Hey, if I'm overdoing it, if we're out for a hike and I start moving slowly," the cold weather really affects me. I know everybody says the hot weather and hot weather unfortunately affects me, too. If I'm out for a long walk with a friend and I'm like, "Body's not moving as well," they can say like, "Let's cut it off. Let's go home and get you feeling better." I think in the initial stages, you have to figure that out. Geoff Allix (14m 58s): Yes, cold weather is good for me. I've always been into outdoor sports. The last one that I stopped doing was snowboarding. Since having MS, I've done two snowboarding trips. I can do that because I can stay cold, whereas a Mediterranean trip in the summer is much harder for me. Chris Cerillo (15m 25s): I'm not going to go down south and visit my family in the summer. I'm sorry, I'm not doing that. No July trips to Florida. Geoff Allix (15m 34s): The problem is my family loves it. I still have done trips and we've been to Thailand, we've been to Costa Rica, and we're planning to go to Sardinia when they finally let us travel again, but I know I won't be doing much. I'm going to be by the beach, and I'll go to the sea and cool down. Chris Cerillo (15m 55s): Yes, don't overdo it. We learn as we go. Geoff Allix (15m 59s): Have you found differences since you've been doing Overcoming MS? Has it made a difference? Chris Cerillo (16m 7s): It definitely has. I was a vegan when I found out about OMS, so I was already kind of there, but I was a junk food vegan. I had to switch to an actual plant-based diet and eat a lot of greens. When I do that, I feel better than when I eat frozen pizzas, chips, and soda. It's crazy how much of a difference it actually makes, but it is true. It's true. If I exercise, I feel better. It's good for the whole system so it's good for your brain, fighting depression, sleeping better. Chris Cerillo (16m 47s): Go exercise, go eat some good food, hang out with friends when it's safe to do so, but OMS is definitely helpful, yes. Geoff Allix (16m 56s): There's been a lot of articles because we have a thing, I don't think it's international, called Vegan January, where they try and encourage people to be vegan in January. Is it a thing everywhere? Chris Cerillo (17m 10s): It is a thing here too, yes. Geoff Allix (17m 11s): There have been some articles about this saying, "Actually, being vegan isn't necessarily healthy." When you read these articles, it's because there is a lot more veganism in this country now. You see a lot of stuff in supermarkets which is vegan fast food really, like processed vegan foods. It's not so much being vegan. It's the plant-based whole food, isn't it? Chris Cerillo (17m 40s): There's a difference. Geoff Allix (17m 41s): That is more effort because you are going to be chopping up vegetables and cooking them. Chris Cerillo (17m 47s): Yes. It's annoying. To be honest, I don't like cooking. I don't enjoy it, but I do it. You figure out...
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Coffee Break #28 with Claes Nermark | S4E47 bonus
02/14/2022
Coffee Break #28 with Claes Nermark | S4E47 bonus
Welcome to Living Well with MS Coffee Break #28, where we are pleased to welcome Claes Nermark 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 . We hope you enjoy this episode’s conversation with Claes, coming to you straight from Sweden. Claes’s Bio: Claes lives in Sweden. He is happily married to Malin, and they have three grown children. At university, Claes trained to become a physical education and biology teacher. In addition to teaching, he has added the following skills to his CV: software trainer, fitness and yoga instructor, event manager, sports club administrator, operations manager, vice principal, and employee wellness manager. In 2002, during a stressful period as an event manager, Claes was diagnosed with optic neuritis. A scar in the brain where the optic nerve branches to each eye was found, and he was diagnosed with a stroke as the disruption of sight was very similar in both eyes. But was it really a stroke? In 2010, it was time for a career change from sports club administrator to operating manager at a start-up in holistic health. During the stressful preparations for his new role, he noticed obvious double-vision when driving home one day. The MRI scan showed multiple lesions in the brain, and Claes was diagnosed with MS. Malin, Claes’s wife, learned about OMS on the internet and this was the first step on an amazing journey to health and recovery. Apart from reading the book and adopting the program, Claes is forever grateful that he got the opportunity to attend the first OMS retreat in the northern hemisphere at Launde Abbey in 2013. The amazing people Claes and Malin met at Launde Abbey have all become their OMS family. Without any DMDs, Claes has now been relapse free for eight years (and counting). Today he runs his own business, Do Your Thing, as a health creator doing public speaking, teaching, coaching, fitness classes, and personal training. In 2021, Claes became the first OMS Circle Ambassador in Sweden. Questions: Claes, 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. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? I understand that stress was a big factor leading up to your diagnosis. How do you manage it now? What are some of the challenges you faced at first in adopting the OMS program, and how did you overcome them? When did you first start to see any kind of positive indicators in following OMS guidelines? What were these? You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Sweden. Can you talk to us about the OMS Circles experience, and what that’s meant to you? I also understand you’re a contributor to the newly published Overcoming Multiple Sclerosis Handbook. I believe you contributed the chapter on exercise. What do you have to say on the subject? One of your personal interpretations of MS is Mental Strength. It takes a lot of that as well as physical ability to do triathlons, long distance running and biking, all of which you’ve done since your diagnosis. Now we know not everyone can accomplish these feats, but what advice would you give to our community in general about harnessing their inner strength to make progress on their own paths to improving their health? Claes, 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Three Important Lessons Claes Learned in 2021: Sweden had a uniquely open Covid strategy. One supportive call with someone newly diagnosed with MS can make all the difference. You can use avocado to replace butter/margarine in many recipes for baked goods. Three Interesting Facts About Claes: Claes loves travelling and meeting new people and learning about new cultures. He lived for a year in Santa Barbara, California as well as a year in Christchurch, New Zealand. He has circled the globe both east- and west-bound. Since being diagnosed with MS, Claes has completed in an Olympic triathlon (1500m open water swimming, 40km cycling, and 10km running), a 30km cross-country run and a 300km biking event. Claes interprets MS as Mental Strength (during gym sessions it occasionally turns into Maximal Strength). Claes’s Links: Check out , where he posts a weekly video in Swedish (though body language counts for a lot, so you may not even need to speak the language). Claes likes on Instagram. Claes also likes , a global platform for personal development. Coming up on our next episode: On the next episode of Living Well with MS, premiering February 23, 2022, meet , an OMSer from the United States who discusses living life to the fullest with MS, including the peaks and the valleys. You won’t want to miss this intimate first person POV on life with MS. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S4E47b Transcript Coffee Break #28 with Claes Nermark Geoff Allix (41s): Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year anniversary serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our global Overcoming MS community. Our Coffee Break series invites 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 . If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. 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 #28, where we are pleased to welcome Claes Nermark as our guest. Claes lives in Sweden, he is happily married to Malin, and they have three grown children. Geoff Allix (1m 21s): At university, Claes trained to become a physical education and biology teacher. In addition to teaching, he has added the following skills to his CV: software trainer, fitness and yoga instructor, event manager, sports club administrator, operations manager, vice-principal, and employee wellness manager. Claes, 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 members of the community from around the world, and today you're in the hot seat, so could you tell us a little bit about your day-to-day life? Claes Nermark (1m 57s): Well, of course. Great being here. Today, I'm doing the final training to become a personal trainer. Well, it's quite a bit of a study right now and starting up being a public speaker, doing the training at the same time. I have, in my days, been busy, starting up in the new year. Geoff Allix (2m 22s): When were you diagnosed with MS? Could you tell us a bit about that and how you initially dealt with it? Claes Nermark (2m 29s): Yes. Let's go back to May 2010, a very busy time in my life. I was transitioning from an administrative position at a huge sports club in Sweden into a startup in education about holistic health. For a couple of days, I was simultaneously doing more or less two jobs, commuting like an hour down south for meetings at my old job in Malmo, two hours in the car up north to meetings with my new managers, and an hour back home. Probably did some workout in the evening, and then next morning, down to Malmo and up north again. Claes Nermark (3m 10s): When I got into the car, I suddenly had double vision, but if I held my head on the ride, it almost narrowed it to one road. I was just three quarters of the one hour back home and two takeoffs from the freeway almost back home. Sitting at the dinner table, my wife said, "Well, you have to see the doctor. This is no good." I was like, "Well, I'm so busy, not tomorrow," and she said, "Maybe next week, but please call the advice line, at least." I did. I called the advice line and I said, "Hi, my name is Claes and I have this double vision out of nowhere." Claes Nermark (3m 50s): My wife reminded me before making the call to tell them you had a stroke eight years ago, so I said, "Okay, and I had a stroke eight years ago so what's your suggestion." They said, "I think you should call an ambulance and come in right away." That was quite different from my view of not having time to see the doctor the next day or the next week, but my wife took me there. They did all sorts of the regular neurological scans and a regular x-ray. I was a fully fit man, and they didn't find anything wrong with me. They said, "Well, you may stay tonight. Claes Nermark (4m 31s): You might get a return appointment for an MRI scan during the weekends." With my double vision, I realized I couldn't do much proper job the day after anyway, so I stayed at night. I got an appointment for an MRI scan, and it turned out I have active lesions in my brain. The doctor said, "This is one sign of multiple sclerosis, and we would like to make a number of punctures as well to rule out some other alternatives." I have that one down as well, and I found one out of two indicators for MS. Claes Nermark (5m 12s): I got the preliminary diagnosis and, straightaway, got onto intravenous cortisol. I stayed for a few days, got very tired, got back home, and slept for days. I was lucky because I didn't have any experience of knowing anyone with MS, so I didn't have any real picture of what MS really meant because I was so focused on getting into my new job. It was kind of, "Okay, let's fix these so I can get on with my life." Claes Nermark (5m 52s): “But my wife had quite another vision because her grandma ended her life in a wheelchair due to MS so that was her picture of having MS. Seeing me going down that route was not a future scenario for our family and things.” She said, "Okay, you're not a good reader with your double vision. I'll scan what I can find, and I'll order some books." She got tons of books and started reading. Well, I was on sick leave as I couldn't do much. It was just tiring walking and doing things. Claes Nermark (6m 33s): If I just walked down the path, should I take the right or the left one with my double vision? Once in a while, I used the patch for one eye to ease off the double vision and things like that, but it was very tiresome, but luckily, I never got afraid of getting the MS diagnosis. We've been working a lot with mental training, doing visualization, things for sports events, and doing various things in life. That's one thing I used before, so my diagnosis was then in 2010, but looking in the rearview mirror, the stroke I mentioned from 2002 was another very hectic period in my life when I was working more than full-time as an event manager, trying to be the best dad and husband ever. Claes Nermark (7m 34s): At the same time, I ended up with optic neuritis, and back then they did all sorts of examinations, but it took like six or seven weeks until I got to do the MRI scan. When those results came back, they found one score or lesion, probably a score as it was weeks later, that was situated just before the optic nerve divided into each eye. My optic neuritis was very similar to before and they said, "Okay, we diagnose this as a stroke." Claes Nermark (8m 15s): But some years ago, I got to read all my old journals. In that journal from 2002, there was a little note, "Multiple Sclerosis?" As they found this scar and my vision was back to normal weeks later with no other symptoms, I got the diagnosis of stroke. Then again, between 2002 and 2010, I had others like numbness starting in my toes, slowly reaching just mid-thigh. Before it was turning back, I went to an acupuncturist to treat this weird thing. Claes Nermark (8m 60s): I had tingling in my hands and things like that during these years up to my official diagnosis in 2010. Officially, I was diagnosed in 2010, but probably I had my MS debut in 2002 with the optic neuritis. Geoff Allix (9m 18s): Then you probably never had a stroke. Claes Nermark (9m 20s): Probably not. Geoff Allix (9m 21s): That's fascinating when you say it because you look incredibly fit and I think that you don't look like someone who's had a stroke, but actually, that's amazing. Claes Nermark (9m 35s): Yes, I was just 40 years old having a stroke, being a fitness instructor didn't really come along with what I knew about fitness and health even though I now know a lot more. If I haven't got my MS diagnosis in 2010, I would most likely have had the opportunity to have a stroke or something similar later in life due to the lifestyle I had back then. I thought it was healthy, but wow, I've learned a lot since. Geoff Allix (10m 8s): Yes, likewise. I thought because I was slim and I could run a long way, I was healthy. I could eat anything as long as I burnt off the calories by doing exercise. That was my thinking. Anyway, when did you come across OMS and why did you decide to follow the OMS program? Claes Nermark (10m 31s): Well, luckily, one of the books, Marlin, my wife found when scanning the market was Overcoming MS, the big book by George. She started reading it and, we started it. I actually say "we" because she was on the same journey from the very beginning. We adopted most of it at once, but not most of it as she bought more books that were other alternatives. On top of the OMS program, we took gluten away and God knows what else we had to take away or adapt. Claes Nermark (11m 13s): For the first couple of months, we opened the fridge and said, "There's nothing we can eat," but slowly we realized, "Okay, probably the OMS program is 'the one' to trust." We went more and more into that one, even though there were some things. We've been into raw food for a while before my diagnosis, so we used a lot of cold-pressed coconut oil. We've read all about the benefits of that one, but then again, it's all fat fats, but we keep that one because we've heard from other sources that's a good thing, along with dark chocolate. Claes Nermark (11m 59s): With all the antioxidants, that's got to be good for you. We kept the dark chocolate. We were probably like 90+ percent into the program. As we've been in New Zealand for almost a year with the kids when they were small, Marlin found out about the retreat, mainly in Australia and New Zealand. We thought that was a good reason to go back to New Zealand. I wrote it down to the golden foundation, I think it's called. I asked, "Okay, when is the next retreat scheduled for New Zealand so I could see if I could get some funding from some grants or something here in Sweden to support the trip." Claes Nermark (12m 46s): I got some dates, but just maybe a month or so after I got an email saying, "Hey, you've shown interest in our retreat down under. We've just decided to set up the first in the Northern hemisphere, so you got another two weeks to decide whether you want to leave early bird applications." I just told them all, "Well, we just have to go. We can't miss this opportunity." In 2013, we were among the lucky ones getting into the Launde Abbey retreats. Claes Nermark (13m 32s): We referred to it as our second family that built up during that week. It was a week with George, <inaudible>, his wife, Sandra, a yoga instructor, and some other amazing people. I think we were about 35 people with MS, primary progressive, and like me, relapsing-remitting, and maybe 10 partners coming along as well. We actually lived the program for a week. When we had the retreat for ourselves, so they set up the menus and things like that. Claes Nermark (14m 19s): George went through everything from medications to meditations, and a lot of the research backing up all the claims in the book. I talked to George, and I said, "What about these coconut oils?" He said, "Well, it's saturated fats. I haven't found any studies separating animal or vegetable fats. As I haven't found any studies proving it's safe, I choose not to be the Guinea Pig." I was like, "Kind of a good point of view." Claes Nermark (14m 59s): Seeing George being so vital, fully fit, no signs of MS whatsoever, I realized, "Okay, let's drop the coconut oil." We actually dropped the chocolate at that point. From that retreat, we really have truly believed in the OMS program. Geoff Allix (15m 24s): Yes. It's true that the saturated fats from plant sources, we just don't know, do we? It's just one of those things that hopefully there'll be more research on because they know it is different. There are big chemical differences between coconut oil and meat fat, but like you say, do you really want to be the Guinea Pig to find out if it's okay or not? Maybe, in the future, we will be having coconut oil and we will be having chocolate. Claes Nermark (15m 55s): Yes. There were many nuts and seeds containing lots of fat as well, even though they've got other fats, but it's not fat alone. It comes in combination with other good things as well. Geoff Allix (16m 9s): I've had people actually have a very small amount of chocolate, very dark chocolate because there are benefits to chocolate. They weigh it up, but yes, it's very difficult. Hopefully, there will be, in the future, more research because the more I think it's becoming normalized that diet and lifestyle have a factor, then hopefully, there'll be more research done. It's difficult because the drug companies clearly aren't going to pay lots of money for it. Claes Nermark (16m 41s): Those kinds of studies, no, unfortunately. Geoff Allix (16m 45s): You mentioned you had a very stressful life. How do you manage stress now that you've been diagnosed? Claes Nermark (16m 54s): Well, in the beginning, I was just doing nothing for a while, but then...
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Hello 2022, Hello Overcoming Multiple Sclerosis Handbook | S4E47
02/09/2022
Hello 2022, Hello Overcoming Multiple Sclerosis Handbook | S4E47
More than 21 years since Professor George Jelinek published ‘Taking Control of MS’ (2 editions), followed by the first edition of ‘Overcoming Multiple Sclerosis’ in 2010 and the second edition in 2016, Professor George Jelinek is back with the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We are pleased to welcome back Professor George Jelinek, creator of the OMS program and one of the three editors of this new, highly anticipated book. We also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book. Prof. George Jelinek’s Bio: Professor George Jelinek is the founder of the within the Melbourne School of Population and Global Health at The University of Melbourne and Honorary Professor at NEU. The NEU's charter is to investigate the modifiable lifestyle risk factors that predict the progression of MS with a view to refining a preventive medicine approach to management of the disease. Professor Jelinek specialized in emergency medicine, winning the prize in the first specialist examinations in 1986. He is a past President of the Australasian Society for Emergency Medicine (ASEM) and past Vice President of the Australasian College for Emergency Medicine (ACEM). He was the first Professor of Emergency Medicine in Australasia and was the founding editor of the journal Emergency Medicine Australasia, a MEDLINE-indexed journal that he has edited continuously for nearly 30 years. For his contribution to emergency medicine, he was awarded the ACEM Medal in 2003, the highest individual honor in the specialty of Emergency Medicine in Australia and New Zealand. The College for Emergency Medicine also awarded him the 2006 John Gilroy Potts Award and the 2012 and 2014 Edward Brentnall Awards, for the best publications in emergency medicine and public health respectively in those years. Recognizing his contribution to both emergency medicine and multiple sclerosis, Professor Jelinek was a Western Australian finalist for 2008 Australian of the Year, and a Victorian Finalist for the 2016 Australian of the Year. Most recently, recognizing his leading role in MS epidemiological research and strong background in medical journal editing, he was appointed Chief Editor in neuroepidemiology for the leading MEDLINE-indexed neurology journal , ranked in the top 16% of the top tier 192 neurology journals indexed with Thomson Reuters. Professor Jelinek is the author of ‘Overcoming Multiple Sclerosis’ and one of the editors (along with Associate Professor Sandra Neate and Associate Professor Michelle Donoghue) of the newly published the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. Associate Professor Sandra Neate’s Bio: Associate Professor Sandra Neate is a Senior Principal Clinical Research Fellow and the Head of the Neuroepidemiology Unit. She has also been a facilitator on Overcoming Multiple Sclerosis events. Sandra completed her medical degree at the University of Melbourne in 1985. Sandra went on to train as a Specialist Emergency Physician with the Australasian College for Emergency Medicine working as an emergency physician for 20 years at St Vincent’s Hospital Melbourne. She has also worked at the Coroners Court of Victoria since 2010 and on the Victorian Mental Health Tribunal since 2015. Sandra’s interests moved towards research, and she has published in areas regarding coronial matters and family experiences of organ donation. She commenced at the Neuroepidemiology Unit, along with George, in 2015 and now leads the team and their major research projects, the HOLISM study, the STOP MS study, investigating the outcomes of people who have attended residential lifestyle modification workshops, and the Multiple Sclerosis Online Course trial among others. In 2021 Sandra and George won the Melbourne School of Population and Global Health Engagement Award in recognition of their work and research with the MS community. Sandra is one of the editors, along with Professor George Jelinek and Associate Professor Michelle Donoghue of the newly published ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. Questions: Professor Jelinek, or may I call you George, so wonderful to have you and Associate Professor Neate on the podcast again. First and foremost, since we haven’t had you as a guest on the show in a while, can you fill us in on what you’ve been up to these past few years? George, can you tell us a little about the new ‘Overcoming Multiple Sclerosis Handbook’ and how the project came together and to fruition? Neate, or may I call you Sandra, how did you become one of the three principal editors, along with George and Associate Professor Michelle O’Donoghue? George, what are the main differences between this new handbook and the original editions of ‘Overcoming Multiple Sclerosis’? Sandra, anything to add to that? Also, Sandra, I understand this new book is a collaboration with many different contributors from around the world. Was that hard to manage and what did it add to the project? George, have there been any promising developments over the past few years that you’ve either tracked or somehow been involved in that provide further support or evidence to the efficacy of the OMS approach to lifestyle modification for managing MS? Sandra, from the NEU perspective, where you serve as head, how does this new book add to the arsenal of ways in which you’re trying to advance lifestyle modification therapy for people with MS? George, how do you recommend people use the new book? Is it more for a particular audience, such as newly diagnosed? Question for either of you: how does one get the book? Is it out now? Sandra, any final thoughts or words of encouragement for the OMS community? George, one final question for you: Overcoming MS the charity is celebrating its 10th year in 2022. What is your anniversary wish for OMS? Thank you, Professor George Jelinek and Dr. Sandra Neate, for joining us on this special episode to announce the publication of the ‘Overcoming Multiple Sclerosis Handbook, A Roadmap to Good Health’. We encourage everyone listening to read the book. Information on how to get it is available in our show notes. And thank you both for all you do to keep advancing the mission of OMS and the benefits of lifestyle modification for all people with MS. I hope you both have a happy 2022! Links: Get directed to where the new is being sold in your area Coming up on our next episode: On the next episode of Living Well with MS, join us for the next installment of our Coffee Break series, where we meet , a health coach, personal trainer, and the first OMS Circle ambassador in Sweden. Premieres February 14, 2022 on your favorite podcast platform. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E47 Transcript Hello 2022, Hello OMS Handbook Geoff Allix (1s): Welcome to Living Well with MS, the podcast 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. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at or in whichever podcast platform you used to tune in to our program. 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. Geoff Allix (47s): Have questions or ideas to share? Email us at , or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. More than 12 years since the first edition of Overcoming Multiple Sclerosis was published and six years the release of the second edition, Professor George Jelinek is back with the Overcoming Multiple Sclerosis Handbook: A Roadmap to Good Health. We are pleased to welcome back Professor George Jelinek, creator of the OMS program, and one of the three editors of this new highly anticipated book. Geoff Allix (1m 32s): We are also very pleased to welcome back to the podcast Associate Professor Sandra Neate, Head of the Neuroepidemiology Unit at the University of Melbourne, and another of the three editors of the new book. Welcome back, Professor George Jelinek and Associate Professor Sandra Neate. Could I call you George and Sandra? George Jelinek (1m 54s): Yes, of course, Geoff. Sandra Neate (1m 55s): Of course, yes. Geoff Allix (1m 56s): Welcome back to the podcast. Sandra Neate (1m 57s): Thank you. George Jelinek (1m 58s): Thank you. Geoff Allix (1m 59s): George is the founder of the neuroepidemiology or NEU unit at the School of Population and Global Health at the University of Melbourne. I will avoid saying that again. So, if I'm about to say it, I'm just going to say NEU. Okay? George Jelinek (2m 20s): It's quite alright. Geoff Allix (2m 23s): It's quite big news with the launch of a new book, and it's wonderful to have you back on the podcast. First and foremost, since we haven't had you as a guest for a while, can you fill us in on what you've been up to for the past couple of years? George Jelinek (2m 38s): Well, I think people may be aware that I retired in October 2019, which seems like a lifetime ago after all the events that have transpired since the start of 2020. I certainly planned a different retirement than I'm finding myself in with COVID, but I guess, one of the important projects and a really big project in that has been this book, which has really taken a couple of years to get together and get to the stage now where it's about to be released. I had had other plans. I'd had plans for travel. Geoff Allix (3m 19s): I was going to say were you planning on traveling? That probably didn't go too well. George Jelinek (3m 24s): No, that went out the window a little bit. We've done a few small trips whenever windows of opportunities have opened up, but Australia's had its particular response and it's been very hard to go anywhere really. The other thing, I guess, that I've enjoyed doing, and I was planning to do in retirement anyway, was do more of my writing and recording of music, which, as a young man, I used to do quite a bit of recording on a reel-to-reel type deck. Now, with digital stuff, a blank canvas opens up with all these techniques that you can use that I never had access to in the past. George Jelinek (4m 8s): I just laid down track after track, putting down little various instruments, then singing, putting the harmonies on, putting the drum track on, and so on. I've put probably seven or eight songs down during lockdown to the stage where they're ready to be released. I'm pretty happy with that little endeavor. It's been good fun. Geoff Allix (4m 28s): The future might be rockstar George Jelinek, previously known as your epidemiologist. George Jelinek (4m 34s): Well, I think a very small audience. Possibly family and close friends might be down. Geoff Allix (4m 41s): Could you tell us a bit about the new Overcoming Multiple Sclerosis Handbook, and how the project came together and came to fruition? George Jelinek (4m 53s): Well, listeners might not be aware that it is actually when Sandra and I were in the UK in the middle of 2019. You might recall we came over for the big Edinburgh event at that time. In fact, I think you interviewed me and Sandra at the end of that day. We went out to London after that and met with the board of trustees. One of the things that was high on their list of priorities was to look at updating the OMS book, whose second edition came out in 2016, and they thought it would be good to get a new offering out there for the OMS Community. George Jelinek (5m 38s): I was very resistant to the idea, really very resistant. I'd seen that last book as the last thing, the last big project I would do in writing, but Sandra and I talked about it. The more we talked about, the more we thought, "Actually, this is a really good opportunity, a very different opportunity than me writing a book. Why don't we get a whole range of contributors from across the OMS community worldwide to write it, not only their experiences but the skill and wisdom they've distilled over quite often long periods following the OMS program, adhering to the program, and get that into a big volume?” George Jelinek (6m 27s): Then it has a consistent theme and feel to it. Sandy and I were initially the editors of the book, and then we felt that we probably should broaden that a little. We asked Michelle O’Donoghue, who is a Harvard cardiologist who's been on the program for about 10 years and whom we met in Boston during the US tour back in 2016, to be a co-editor with us. That project really has taken a couple of years. We had to recruit that big group of people. There are 19 content chapters in the book, and every chapter in the book, bar a couple, is followed by a personal story from someone else from the OMS community. George Jelinek (7m 16s): It was a short story of their experience, usually trying to relate it to the particular content of that chapter. Then each chapter is also introduced by an inspirational quote from someone else in the OMS community. We've got around about 50 different OMS voices, all pitching together about the program, how to adapt, and how to adhere to it. What are the tips and traps around the program? What their experience might do in helping to illuminate the pathway for people with MS. Geoff Allix (7m 54s): Would people treat it as a companion guide? It's not a new edition, is it? It's a companion to the Overcoming MS main book. George Jelinek (8m 4s): Yes, they're two very different books. The last book was me, really my own voice, and trying very hard to put all the complex medical literature into lay language, to make a strong case for why the OMS program should be adopted. At times, looking back on it, I think I was more or less successful in that. Some of the science is a bit obscure and a bit hard to explain, but it seemed to hit a chord with a big portion of the OMS Community. A lot of people have adopted it but one of the constant bits of feedback we got was that it wasn't really all that clear on how best to adopt it. George Jelinek (8m 53s): This book really is that part of the jigsaw. As you said, it's a companion. It's not a research-based book so even though it's based on the program, which is, in itself, research-based, it's not a book that's full of references. It's much more full of the personal experience and wisdom that each of these people in our community has got. Many of these people are really well known to our community. People who've been OMS facilitators, people who appear on your podcast series, people who have done cooking demonstrations for OMS, people who range in profession from chefs to psychiatrists, to general practitioners, family medicine doctors, to psychologists, to astronomers. George Jelinek (9m 49s): We've got a whole range of people in there who speak from their experience. That's the flavor of it. That's the thing that we're really happy about that it's no longer this single voice, which is always problematic because it just really reflects my views and has become very ingrained. It's nice to see a whole lot of other people tell us their views and what they've found easy, what they've found hard, how best to get over some of those obstacles, and so on. Geoff Allix (10m 25s): Sandra, how'd you become involved as one of the principal editors of the new handbook? Sandra Neate (10m 31s): I was there at this meeting in 2019 that George referred to in London and I think when it became clear that George didn't want to rewrite the Overcoming Multiple Sclerosis book as we discussed we came up with this idea of something different. One of the main reasons we wanted to make it different was to, what we call future proof the book. Meaning that because the other book is full of hundreds of references, it really needs to be kept up to date. You need repeat additions so that the book doesn't become out of date. We planned this book to be future-proofed, meaning that it wasn't full of references to the medical literature. Sandra Neate (11m 13s): It was peoples’, as George said, distilled wisdom. The idea was really germinated between the two of us and working at the university, I had a six-month sabbatical coming up in 2020 so this was my proposal as part of my sabbatical, to use three periods of two months that I had to, first of all, work together to recruit the authors and then edit the chapters that were coming in. We did it over the year really of 2020 and 2021 so seems like a long time ago now. That was my role, and it was a joint venture. Sandra Neate (11m 56s): George, obviously, had a lot of them within the community and he kept a track of all the authors and followed them up, et cetera. Then he, Michelle, and I edited all the chapters jointly, Michelle from over in the US with a newborn baby. She did as much as she possibly could and always added a voice of calm reason and a different perspective to the things that we thought. She had a new perspective to add to what we commonly think, which was a wonderful addition. That's the way it evolved and played out. It's been a really rewarding experience because we're very proud of what we've produced, but the people who were involved in it, of course, were very involved and very keen to see the end product. Sandra Neate (12m 47s): They definitely feel they have an enormous stake in it, and they do. That's a lovely feeling that it's a joint venture and a product that's been made by many people, like-minded people. Geoff Allix (12m 59s): Was it hard to manage people around the world? How did that work? They've added to the project, and you mentioned different voices like Michelle. Sandra Neate (13m 12s): Yes. Well, the three editors, we stayed apart from all the chapters, but really, we just sent out invitations saying, "Would you be interested in authoring the following chapter?" People were incredibly keen and helpful. There wasn't much that we needed to do to entice people to become involved. Yes, there were one or two people who were always a little bit late to meet their deadlines, but in general, everyone had their work back when was asked. It was an amazing thing. Really, they're all wonderful. It varied between the amount of editing that was required between chapters. Some required some work just to get them down to word limits and those sorts of things, but in general, it was a fairly easy task to get everyone to meet the chapters. George Jelinek (13m 59s): These...
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Coffee Break #27 with Vickie Hadge | S4E46 bonus
01/24/2022
Coffee Break #27 with Vickie Hadge | S4E46 bonus
Bio: Vickie serves as the Ambassador of the OMS Circle in Connecticut. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2006. She lives well with her MS by following the OMS program and encourages others to do the same through her OMS Circle. Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends. You can see more of Vickie on , where she shares her thoughts on living well with chronic illness. Questions: Welcome back to our podcast, Vickie, and thanks for joining us again. You were a guest on our second season discussing OMS Circles and community-building, which was great, but now we’d like to get to know you a bit better, as you’re a vital part of our growing global OMS community. Can you please tell our audience a bit about yourself and your MS journey? When did you discover OMS, and what was it like in the early days trying to follow the OMS program? You’re currently serving as the ambassador of the OMS Circle in Connecticut. How is that going and how has having that community helped during the pandemic? On another note, as of recently you’re also doing some work for the charity, tapping into your expertise running a virtual assistant business. Can you share a little about that? What was it like crossing over from being a member of the community to actually working with the charity? Outside of work, what are your passions and hobbies? I actually learned you have quite an interesting one concerning cameras and mushrooms. Do tell! You’re also a passionate plant-based foodie, and just completed a special certification in that I believe. What can you impart to our listeners about any personal discoveries you’ve made delving into that rich culinary space? Finally, and a bit of a tradition here on Coffee Break, are there any tips or pieces of advice from your own experience that you can share with those newer to the OMS program to help them on their journeys? Thanks so much for joining us on this episode of Living Well with MS Coffee Break, Vickie. I hope you have a wonderful 2022! Vickie’s Advice to New OMSers (in her own words): Remember, change takes time, and it can be subtle! Since starting my journey with OMS over four years ago, I am still noticing small improvements, one of them being better balance. Change can be difficult at the beginning, but your body and your habits will adjust. Keep trying to make progress with implementing the program and soon it will become part of your daily routine without thinking about it. Sleep and stress reduction are two keys to living well with our MS. Don't forget, the OMS program is much more than a diet. Some Tidbits About Vickie (in her own words): Although many think I have restricted my diet, I have discovered since committing to being whole food plant-based that my diet has diversified considerably. With over 20,000 types of edible plants out there, I have a more diverse diet now than I ever did. Since the pandemic hit, I discovered a love for walking in the woods and started a hobby of photographing wild mushrooms. When I am not working or volunteering you can usually find me in the garden, cooking, or hanging out with husband, children, and grandchildren. Links: Vickie’s Channel Learn more about Coming up next: On the next episode of Living Well with MS, premiering on February 9, we are honored to welcome back Professor George Jelinek, the founder of Overcoming MS, and Associate Professor Sandra Neate, the head of the at the University of Melbourne. They’ll be discussing the release of the brand-new , so this is a special episode you won’t want to miss! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E46b Transcript Coffee Break #27 with Vickie Hadge Geoff Allix (10s): 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 and 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. Geoff Allix (52s): You can find these on our website at . 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. Get your favorite beverage ready and let's meet today's guest on Living Well with MS Coffee Break. For this episode of the Living Well with MS Coffee Break, I'd like to welcome back Vickie Hadge. Vickie serves as the Ambassador of the OMS Circle in Connecticut, USA. She was officially diagnosed with MS in 2017 but had her first discernible symptoms in 2011. Geoff Allix (1m 33s): She lives well with her MS by following the OMS program and encourages others to do so through her OMS Circle. Vickie has been running her own Virtual Assistant company since 2003 and enjoys working with her global clients. She is active in her community, serving on the board of an education foundation and volunteering at her church on several committees. She recently completed a whole-food plant-based certificate from eCornell and enjoys cooking new and delicious plant-based delicacies for her family and friends. Vickie, welcome back to the podcast, and thank you for joining us again. You were a guest on season two of the podcast, way back a couple of years ago, discussing OMS Circles and community building. Now, we'd like to get to know you a bit better as you're a vital part of the growing global OMS community. Geoff Allix (2m 18s): To start off with, could you tell our audience a bit about yourself and your MS Journey? Vickie Hadge (2m 24s): Thanks so much for having me back, Geoff. It's my pleasure. Sure, I live in Connecticut in the Northeast United States. I started my MS journey way back in 2006. I initially had some foot drop issues, but I wasn't diagnosed at that time. They really weren't sure. They wanted to keep an eye on me, but it definitely got my attention. I started paying closer attention to my health, eating more vegetarian, doing yoga, and meditating. This is all before OMS came into existence. Then back about 10 years later, I started having more symptoms and went back to the doctor and took about a year from that point to get diagnosed. Vickie Hadge (3m 8s): I was officially diagnosed in 2017 and I have been living well with MS since. Geoff Allix (3m 18s): When did you discover OMS? Vickie Hadge (3m 21s): Actually, I discovered it just prior to my diagnosis. I think like many MS patients, I had a feeling what my diagnosis would be. It was in the realm of discussion with the doctors as they're trying to figure out what was going on. I found OMS just prior to my diagnosis so when I got diagnosed, it was really easy to jump right in and start implementing changes into my diet lifestyle to make myself even healthier. Geoff Allix (3m 50s): You were already a vegetarian? Vickie Hadge (3m 52s): I was vegetarian when I started and had been for some time, but then when I looked into the research from OMS, all the evidence behind it, I switched over to completely vegan. Since then, I have gone over to whole food, plant-based so no more vegan junk food. Geoff Allix (4m 10s): Yes, I think that's a key thing, actually, the word whole food, because I've been an unhealthy vegetarian in the past. You can eat really junk food, can't you? There's stuff now that I don't know. Vickie Hadge (4m 27s): Yes, you can. All the chips, the crisps, the donuts, Oreo is making an all vegan cookie, but not very healthy. Geoff Allix (4m 34s): I don't know about you in the States, but probably the same. We've got the, I won't call them out, but the two leading manufacturers of burgers, let's say, now have vegan versions of the leading famous burgers. I'm fairly sure that they're not very healthy. Vickie Hadge (4m 59s): Yes, to be sure. Lots of chemicals, lots of artificial flavors, lots of not-so-healthy fats. Geoff Allix (5m 11s): Yes. You're currently serving as the Ambassador of the OMS Circle in Connecticut. Firstly, how is that and how has that helped? How have you managed that? The OMS Circles are regional communities of people following OMS. Obviously in the pandemic, that's been difficult because, traditionally, people would have met up and seen each other. How have you managed over the pandemic and how has having a community helped during the pandemic? Vickie Hadge (5m 47s): Excellent question. I think the pandemic caught us all off guard. We went into lockdown pretty quickly. Our group, initially, when the pandemic started, I think, we really wanted to stay in touch with each other. We were very concerned about what was going on and what was happening in the world, especially since we had pre-existing conditions. When the pandemic lockdown started, we started with weekly meetings, whereas previously, we were doing monthly meetings. We did weekly meetings via Zoom. Everybody's an expert in Zoom now. It was really helpful for the entire group, me included, to talk about what was happening with the pandemic, our concerns with our conditions, and maybe the disease-modifying treatments that we are on. Vickie Hadge (6m 36s): It was really helpful to have that connection with other OMSers and have that support. We've since gone down to monthly meetings again, and also, still really important, we're still meeting via Zoom. We still like to connect with each other, but we did have some fun this summer where we were able to meet outside when it was safe. We had some really nice meetings outside. One was at a local vineyard. They had live music and we brought healthy snacks to share with one another. It was really great to see everybody face-to-face during the outside meetings. Geoff Allix (7m 11s): Well, yes. We have one coming up actually where I live. The MS center is doing a tryout for their oxygen therapy and the OMS Circle works at the MS center. She said they're already set up for socially distance, COVID safe, and everything so we're actually going to have a few of us go there, but it is strange. There are quite a lot of people in my Circle who I've never physically met, but we have a really active WhatsApp group, and we chat a lot. I think we communicate an awful lot more because it's virtual than we did before where we met maybe monthly physically. Geoff Allix (7m 54s): Now, we actually have daily chats happening and it's quite active. It's actually increased our communication rather than decreased. Vickie Hadge (8m 3s): That's wonderful. Geoff Allix (8m 4s): The other thing that has changed is that you now do some work for the OMS charity going from your work as being a virtual assistant. Could you share some information about that? Vickie Hadge (8m 20s): Sure. I've been a virtual assistant for almost 20 years. I have been working virtually long before the pandemic. I started working with OMS this year, and I'm very excited to be part of the team. I'm providing some support directly to Grazina Berry, the CEO, and Dowshan Humzah, who is the new chair of the board. It's really exciting to help them with the plans coming up for 2022 and the 10-year anniversary of OMS. I also work within the broader team. I help support meetings and do documentation. It's really exciting to work with them. Vickie Hadge (9m 3s): This is a whole other new community. Geoff Allix (9m 6s): You already are a member of the community, but now you're both members of the community and working there as well. How has that changed? Vickie Hadge (9m 15s): Yes, it's been pretty exciting. It's like looking behind the curtain and seeing the inner workings. I have to say, before I started working with OMS, how impressed I was with the organization, and now, being on the inside, seeing how it all comes together, and seeing all the people that it takes to make this happen, their dedication, the planning, and the supports that they put in place for OMSers is just wonderful. It's so nice to see a team working together, celebrating living well with MS, and doing what it takes to live well with MS. Geoff Allix (9m 58s): I've met quite a lot of the people before during the podcast who became more involved. You could easily just think that OMS has a new book every few years and does some retreats. Really, is there anything else going on? Then you realize there is an awful lot. All the research and there's communication with different health bodies in different countries. There are huge amounts going on. Vickie Hadge (10m 25s): Yes. I know that this year they're starting to work with healthcare providers and working directly with the healthcare providers to get more information out there. It's exciting to see the changes that are coming and all the programs that they're implementing coming up. Geoff Allix (10m 46s): Outside of work, could you give us a bit more of an insight about who you are by talking a little bit about your passions and hobbies? Vickie Hadge (10m 55s): Sure. I live at home with my husband, and I have two grown children and two grandchildren. The pandemic has changed our lives like everybody’s a lot. One of the things that we changed during the pandemic is we've been hiking and taking walks in the woods a lot more this year. It's really added a lot to stress reduction in my life, and I just love being out there in the woods. I have found a fascination with mushrooms. I have noticed them on my walks, and I started photographing them with my phone. It is amazing the variety of mushrooms and now I'm almost drawn to them every time we go out for a walk. Vickie Hadge (11m 39s): They come in all different shapes, colors, and sizes. I have taken pictures of purple mushrooms, black mushrooms, and orange mushrooms. They're just fascinating. I started researching a little bit about them. They're not an animal and they're not a vegetable. They're their own classification. I just find them fascinating and fun. That's one of the benefits of the pandemic and changes in our life this past couple of years. Geoff Allix (12m 7s): Yes. I'm incredibly thankful that I live in a rural area. I can't imagine if we moved from the middle of London to a very rural area many years ago, 17 or 19 years ago. If we'd still been in London with all lockdowns, I think we really would have been stuck inside an apartment and being somewhere rural where you can go out and about in lockdown. It was really nice, so I feel sorry for the people who are in cities, apologies, but it's all improving, hopefully. Geoff Allix (12m 51s): You mentioned mushrooms. You're a passionate food lover and you've just completed a special certification. What could you tell our listeners about personal discoveries that you've made learning about food, specifically, OMS-compliant food? Vickie Hadge (13m 10s): Sure, yes. I decided to really focus on plant based when I started OMS because I was vegetarian before. Recently, I got a certificate in plant-based nutrition from eCornell, and I learned so much. As we were discussing earlier, vegan food can be healthier or not healthy. Everything that we consume is going to contribute to our health or lack thereof, and I learned so much about nutrition and getting the most nutrient-dense foods that I could into my diet. In learning that, I also became a little braver in the kitchen. I have learned to experiment a lot more with foods and combining foods, and maybe going off the recipe a little bit saying, "Hey, this would be a lot better if I added some dark leafy greens to it so I could up the nutritional content." Vickie Hadge (14m 4s): I even eat my oatmeal with greens now. I've put greens and marinara sauce on my oatmeal and it's a really nice savory breakfast as opposed to a sweet breakfast. Geoff Allix (14m 19s): Could you give our listeners a tip then of how they could improve their diet? Vickie Hadge (14m 26s): Yes. One tip is dark leafy greens. They are the most nutrient-dense foods that we can consume. I try to do it at least three times a day. I mentioned the oatmeal. You can do fruit smoothies, have salad. Add greens to anything that you're cooking, whether it's a super stew or a sauce. Dark green leafy vegetables also include the vegetables like broccoli and broccoli sprouts. Broccoli sprouts are the most nutrient-dense food that we can eat. If you like sprouts, eat broccoli sprouts. Also, focus on omega-3 rich foods. OMS lets us know that it's important to have that good balance of omega 3s to omega 6 fats in our diet. Vickie Hadge (15m 15s): There are a lot of omega-3 rich foods like Brussel sprouts, walnuts, broccoli, kidney beans, wild rice, flax seeds, chia seeds, and hemp hearts. Sprinkle some chia seeds in your smoothie or have some hemp hearts on your salads. They're really nutrition powerhouses. Geoff Allix (15m 33s): Another thing asking for a bit of advice, we have a tradition on the Coffee Break to ask if there's any advice from your experience that you could give, particularly to people who are new to following OMS that would help them start their OMS journey? Vickie Hadge (15m 50s): Yes, I think one of the important things is to start where you are. Right where you are. "Here I am. I'm going to make steps today to make changes, to recommit to living well." I think we're just into the new year now as we're recording this, and this is a great time to do some self-evaluation. "Where are you on your seven steps of the program and where can you make tweaks to adjust maybe a little?” Add some more dark green leafies, get rid of the processed foods. Focus a bit more on maybe stress reduction, adding daily meditation or walking meditation. Vickie Hadge (16m 29s): We talked about walking and how relaxing that can be and stress reducing that can be. Another thing is don't expect changes in one week. This is going to take a long time. I think Dr. Jelinek said, "Envision it as a large boat. You can't turn it around on a dime. It's going to be slow to turn. Once it turns and gets through that turn, it can take off in a new direction." Stick with the program, keep making changes, and look for support on the OMS website and through OMS Circles. Geoff Allix (17m 8s): I think that's the problem, isn't it? We've become accustomed as a society to instant things....
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Happy 10th Anniversary, OMS! A Look at What Lies Ahead with OMS CEO Grazina Berry | S4E46
01/12/2022
Happy 10th Anniversary, OMS! A Look at What Lies Ahead with OMS CEO Grazina Berry | S4E46
Happy 2022 and welcome to the premiere episode of Living Well with MS. We are thrilled to launch the 4th season of our podcast with a very special episode celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion, and the start of a hopeful new year, than an in-depth conversation with OMS CEO Grazina Berry. Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has been focused on strengthening Overcoming MS’s ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world’s leading MS lifestyle charity. Bio: Grazina Berry joined Overcoming MS in July 2020 as CEO. She has had an extensive career, as a senior and board executive, in the public and not-for-profit sectors. Grazina is passionate, driven and committed to making a positive difference to the lives of all communities and helping OMS achieve its vision – that every person with MS is empowered to take control of their lives, is making informed lifestyle choices and can lead a full and healthy life. Over the last year and a half, Grazina has been working tirelessly with the OMS community, the team, trustees, and partner organizations to implement OMS’s new strategy, focused on informing, supporting and empowering people with MS and their families to lead healthy lives. A collaborator at heart, Grazina is a firm believer in working in partnership with people with MS, their families, professionals, and other MS focused organizations, so we can learn from one another, adapt to the ever-changing and complex world around us, and create long-lasting impact, together. Intro: Happy 2022 and welcome to the premiere of the 4th season of Living Well with MS, the podcast from the world’s leading MS healthy lifestyle charity. This is our season opener and 77th episode to date, and to mark the occasion we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina. Questions: Our 4th season is just one of the milestones that Overcoming MS is marking this year. Most notably, it is the organization’s 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives? In your view, how has OMS evolved over the past decade? As CEO, what are some of the key initiatives that you’re introducing or have introduced to align with the organization’s 10-year anniversary? And in the vein, what might be some of the specific banner projects OMS will be rolling out this year? If OMS was a person and disposed to making new year’s resolutions, what would its resolutions be? How have you seen the MS landscape, and more broadly the holistic health and healthy lifestyle space, change over the years? Has it evolved for the better, worse, or neutral? How has OMS kept pace with some of the changes in the MS landscape you’ve noted? What are your most important considerations in leading OMS into its next decade? What are some of the challenges you feel lie ahead? How do you feel OMS has changed as the result of the deeply impacted, particularly from the physical and mental health perspectives, post-Covid world? How do you feel OMS is making deeper inroads into its community, strengthening its ties with them as well as their ties with each other? If there is one thing you can choose to etch as OMS’s legacy for the next decade, what would it be? And finally, what are you personally most excited about for the year ahead? Links: Coming up next: Please join us on January 24 for the season premiere of Living Well with MS Coffee Break, our podcast series dedicated to the voices and stories of our diverse global community. In Coffee Break #27, meet Vickie Hadge, the Ambassador of the OMS Circle in Connecticut. Vickie is an avid plant-based foodie and speaks about her experiences living well with chronic illness on . We hope you can drop in and get to know her! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS 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 . S4E46 Transcript Happy 10th Anniversary, OMS! A Look at What Lies Ahead with OMS CEO Grazina Berry Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS, a healthy lifestyle charity celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. The goal of our organization and this podcast is to inform, support, and empower people with MS to lead full and happy lives. We're excited you could join us for this new episode. Make sure to check out this episode's show notes for more information and useful links. You can find these on our website at or on whichever podcast platform you used to tune in to our program. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Geoff Allix (47s): Have questions or ideas to share? Email us at or you can reach out to me directly on Twitter @GeoffAllix. We'd love to hear from you. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. Now, let's meet our guest for this episode. Happy 2022, and welcome to the premiere episode of Living Well with MS. We're thrilled to launch the fourth season of our podcast with a very special episode, celebrating the 10th anniversary of the Overcoming MS charity. What better way to mark the occasion and start on a hopeful new year than an in-depth conversation with OMS CEO, Grazina Berry. Geoff Allix (1m 32s): Since assuming leadership of the organization almost 18 months ago, Grazina has led a transformation that has focused on strengthening Overcoming MS's ties with its community, health care professionals, and the MS community at large. In this episode, we will learn about the exciting changes that lie ahead as OMS cements its place as the world's leading MS lifestyle charity. Welcome to the premiere of the fourth season of the Living Well with MS podcast from the world's leading MS Healthy lifestyle charity. This is our season opener and 77th episode to date. To mark the occasion, we are proud to welcome back the Chief Executive of Overcoming MS, Grazina Berry. Thanks for being on the program again, Grazina. Grazina Berry (2m 12s): Hi, Geoff. Thank you for having me back. I must have got something right the first time as you invited me to come back again. Geoff Allix (2m 22s): I'm glad to have you back. Our fourth season is just one of the milestones Overcoming MS is marking this year, and the biggest one, most notable is the organization's 10th anniversary. What kind of birthday party are you planning to celebrate a decade of helping people with MS live healthier and better lives? Probably would be socially distanced in the UK. Grazina Berry (2m 52s): That's fine. Definitely. Well, first of all, congrats to you, Geoff, as well, being the podcast host for our fourth season. That's a celebration as well. Geoff Allix (3m 5s): I can't believe it's been this long. Grazina Berry (3m 8s): I know, but indeed, bearing in mind all the upheaval and uncertainty around us, especially over the last two years, I think we could all do with a little party, couldn't we? The thing about the 10th, 10 is such a big number, isn't it? If I imagined this party, it would have to be one that is really filled with fun, pride, enjoyment, lots of reflections over the standout moments, maybe a few tears here and there, giggles, raise a glass or two, and I think to do the anniversary and all the achievements of the organization over the last 10 years justice. Grazina Berry (3m 52s): We should probably have done parties. I think that's doable by technology, isn't it? We'd like to celebrate with our community who've helped us get to where we are and we'll be looking to unveil the plans in the new year, wanting that to be an element of surprise as well. The listeners and you, Geoff, will just have to watch the space. Geoff Allix (4m 16s): In your view, what's happened in the last 10 years? How has OMS evolved over the past decade? Grazina Berry (4m 26s): Wow, that is a massive question, really. I think to answer it in the best possible way, to do all the achievements justice, I think we should try and jump into that time machine, go back to the beginning, and reflect on some of those standout moments of which the very first one has to be 2012. The fundamental starting point when the charity began, established by the amazing Linda Bloom, working very closely with Professor George Jelinek and Gary McMahon, the CEO at the time. That was the humble beginning in Australia. Grazina Berry (5m 8s): Then in 2013, the charity started distributing the OMS books for free in the UK and held the very first UK conference. I suppose these kinds of events focused on information, very much marked the next couple of years, 2014 in particular. 2014 is worth a bit of a pause as well because we started funding open-access research projects at the neuroepidemiology unit at the University of Melbourne. Then 2015 and 2016 were also really, really important because we began to define our focus internationally. Grazina Berry (5m 52s): We registered as a charity in Australia in the US in 2015. We really went all out organizing residential retreats. Geoff, I believe you've been to one of these immersive, multi-day experiences connecting people with one another, beginning to build communities, but also informing them about the OMS program. Geoff Allix (6m 20s): Yes, I did. A quite transformative thing going to an OMS retreat, but, obviously, they had to stop because of COVID. Also, I'm guessing there are issues with scalability as well. Grazina Berry (6m 32s): Yes, absolutely. Geoff Allix (6m 33s): It's not going to be for thousands of people at each one. Grazina Berry (6m 36s): Unfortunately. I wish they could be, but alas, they can't. However, perhaps later, when we come to talking about plans for the future, I can share with you some of the ideas that we're actively developing and pursuing for reimagining those important events. Back into the time machine, in 2016, I wanted to mention as well because OMS went to the US to raise awareness of the organization and the program, visiting three cities, Boston, New York, and Los Angeles. Then 2017 and 2018, again, quite a lot of events. Grazina Berry (7m 15s): There was one in Northern Ireland. There were a few retreats in Wales, actually, and Australia. Very importantly, that's the year when we launched Overcoming MS Circles. Twenty, I believe. We had 20 in 2018, and these are volunteer-led community support groups. Really important in terms of grassroots activism in those early days, but also connecting people. 2019, another memorable year. UK conference in Edinburgh followed by a high-profile event at the House of Commons in London, and importantly, Geoff, the much-loved podcast began. Grazina Berry (8m 12s): 2019, a really important year. Then we went into turmoil, complex year, I would say. 2020, of course, the pandemic hit. We started to change program and the organization with Gary stepping down and my arrival. Then 2021, again, the pandemic isn't over and it's still causing havoc, but that's the year that marked our new three-year strategy publication in March and growth in our community to 94 circles that we have today, our online platform, but also growing the strength of our community voice. Grazina Berry (8m 57s): Really, going back to your question, Geoff, about evolution, I think you'll notice that the charity started by the immense focus on raising awareness, spreading the word, about the pioneering work of Professor Jelinek. A lot of effort went into high-profile raising events. We then started working more deeply with people through retreats, and as you said, from your own personal experience, impacting them really profoundly, but the numbers were quite small, and they were pretty costly to deliver. Gradually, we've started to think about scale and how technology could help us reach more people. Grazina Berry (9m 41s): My arrival, as I reflect on it, marked a crossroads point at the charity. I led a broad review exercise speaking with the community, trustees, and the founders, of course, the team, lots of other MS organizations, partners, healthcare professionals, looking at whatever data we could really get hold of. Where is MS prevalence heading, for example, and then sadly it’s heading north, isn't it? It's rising. Through all of this, we realized three really important things. One was that awareness alone is not enough to enable or motivate people to change their lifestyle by adopting the OMS program to the extent that those changes really stick and do so at scale. Grazina Berry (10m 30s): We also realized that we need to hold people's hands and support them to become much more attuned to what they need in the contexts in which they live. A one size fits all approach really would not work. Third, we cannot achieve impact at scale by doing it alone. We need to work with healthcare professionals and other organizations. As a result of all this evaluation, the new strategy came to be that has begun that shift to combine awareness alongside some fundamental organizational developments really across our four goals - inform, support, empower, and collaborate. Geoff Allix (11m 18s): You hinted that there are some new things in the pipeline. Is there anything you could give us a hint of? What are some of the key initiatives you're introducing? Could you give us a hint at some of the banner projects that might be rolled out this year? Grazina Berry (11m 38s): Yes, it's going to be a bumper year, Geoff. I can assure you of that. Of course, marked with celebrating the events throughout the year, so perhaps not a big bang. This is the term of a birthday party. Lots of things happening throughout the year and we will be unveiling some really exciting initiatives, and possibly those virtual parties. I can mention a few things without spoiling the surprise that I know the team would be happy for me to share. I think, really importantly, we'll be celebrating the publication of the OMS Handbook in February. Grazina Berry (12m 18s): This is the new book co-edited by Professor George Jelinek, Dr. Sandra Neate and Dr. Michelle Donaghy with multiple authors adding their voices. Please pre-order your copy not to miss out. You can do it now. We'll also be refreshing our brand with very generous pro bono support from the fantastic team at JMA in Australia. Geoff, thank you for your contributions to helping us review the brand alongside other ambassadors. This has been a really insightful exercise to do. One of the reasons why we are refreshing is that we aligned ourselves much more closely to our values being inclusive, empowering, community-focused, evidence-based, collaborative, and dynamic, but of course, none of us are naive to expect that brand alone would help us to achieve that. Grazina Berry (13m 12s): This is important because we wish to present a really professional front to our broader audiences, including and especially, healthcare professionals. We will also be ramping up our advocacy initiatives and our work with healthcare professionals. We will be updating our existing information resources and developing new ones, as well as beginning campaigns. We will be looking to bring back events. I know we've got so many people in our community who are really, really excited about this and need more face-to-face interactions. We are hoping to trial a new immersive experience of supporting people with MS. Grazina Berry (13m 59s): Taking what was wonderful from the retreats, combining a face-to-face workshop with digital resources to inform, support, and empower people to embrace fully the OMS program. We also want to really boost our community engagement and support our ambassadors and circles by investing in additional resources. We will be rolling out, as a bit of a spin-off, a webinar program that is with Dr. Aaron Boster, having piloted the first episode recently, and that's been incredibly well-received. We were absolutely overwhelmed with questions that people had. Grazina Berry (14m 45s): We want to launch webinars series alongside the more mainstream webinars series. Also importantly, we'll be starting to tangibly shape our plans in the US. As you can see, Geoff, there is lots and lots to keep us very busy in 2022. Geoff Allix (15m 7s): All right. If OMS was a person and it made new year's resolutions, what would the OMS' resolutions for the new year be? Grazina Berry (15m 15s): I don't know. This is interesting because personally, I tend not to make resolutions, but if I put myself out of this mix, I think probably the most important one would be, be kind to yourself, make more time to listen to your body, look after your body and mind, make time for you. I think all of us are so guilty of not doing that, but alongside this, I think what's really key as well is to show empathy to others, welcome people to the community, openly, supportively, and without judgment. Grazina Berry (15m 56s): Finally, I would say stick with it. The path of multiple sclerosis is so uncertain for many people but knowing that you're doing all that you can to live well, may that be your driving force, and especially when you have those darker moments, which are probably inevitable, especially in the world that we live in, where uncertainty just keeps on giving and keeps on challenging us. Geoff Allix (16m 29s): Over time, how have you seen the MS landscape change specifically and also the focus on healthy lifestyle? In a broader sense, bringing a healthy lifestyle, holistic health, how have you seen that change over the years? Did that improve, get worse, or stay the same? Grazina Berry (16m 48s): Goodness, that is another huge question. What I would like to do is just latch onto that number 10, which is peppering our conversation today and, again, reflecting a little bit. Ten years ago, I was working in a mental health organization, a fantastic organization called Richmond Fellowship, that provides a really wide range of community-based mental health services. What I was seeing back then, and we actively practiced, was seeing each individual that came through the door of our services, we saw them as a whole, not a label or a diagnosis. Grazina Berry (17m 31s): We took the time to really understand them so that we could address the cause of their distress and mental health challenges. Peer support was already widely used to enable people to help each other, essentially by sharing their experiences, and the mind-body connection was at the forefront. This is 10 years ago. I saw a very similar picture then when I moved to rare illness, cancer space, and other disease areas, actually. We could see already, especially high disease, diabetes, and others. Grazina Berry (18m 11s): They were all embracing a healthy lifestyle, and more...
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Coffee Break #26 with Pat Feller | S3E45 bonus
12/13/2021
Coffee Break #26 with Pat Feller | S3E45 bonus
Welcome to Living Well with MS Coffee Break #26, our season 3 finale, where we are pleased to welcome Pat Feller 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 . We hope you enjoy this episode’s conversation with Pat, coming to you straight from sunny San Diego, California. Pat’s Bio: Pat was born in Southern California to great parents who were both public school educators. His younger brother kept him on his toes. His parents also adopted Pat’s other sibling from Vietnam. Pat traveled a lot in his early adult life: he lived in France, Taiwan, Hong Kong, and earned his MBA in Vancouver, Canada. Pat launched a career in the investment management industry, married his beautiful wife Alice, and raised two incredible daughters. Pat was diagnosed with MS at the end of 2017. The beginning of this MS journey was very hard. He couldn't work. His typically high energy was gone. Depression, anxiety, and identity confusion struck. At the beginning, he was very influenced by the work of Roy Swank, Bob Cafaro, and a Facebook group centered on approaching MS in natural ways. After two years of rest, he tried to return to work as a financial advisor. After one year, it was clear that it wasn't a good fit, and a normal work week was out of the question. In the past year, Pat’s neurologist updated his diagnosis from RRMS to PPMS. Pat tries not to let this affect his mindset. He works hard to be positive in his internal and external voice. His new "raison d'etre" is to be a blessing to others. In that spirit, his MS journey has also strengthened his Christian faith. Pat discovered OMS a few years ago. Dr. Jelinek's words were in fact very influential in his decision early on to discontinue Tysabri. Through much of his MS journey, Pat tried to distance himself from the MS world. But this year, he decided to give back to the MS community by becoming more involved. This has been greatly facilitated by OMS facilitator Phil Startin, whom he got to know in a volunteer PPMS group Phil started. Phil helped Pat get involved with OMS and to learn that community is super important. And the OMS community is a great one to be a part of! Three Important Lessons Pat Learned and Wants to Share: My riches now are not monetary but in the form of blessings. I have become acutely aware of the connection between health and wealth. I have found that the most important ingredient to managing an MS journey is mindset. Pat’s Links: Check out , where he has started a dialogue on the health-wealth connection and its importance to the economy and personal finances. Check out Pat’s Pat recommends this , a cellist with the Philadelphia Symphony who was himself diagnosed with MS and achieved very good results with a protocol very similar to OMS. Pat loves this , who was diagnosed with MS and discovered the power of lifestyle medicine, which is what OMS is about. Coming up on our next episode: This is our final episode for 2021, so take a breath and exhale the year that was to make space for a happier and healthier 2022. Living Well with MS, Coffee Break, and Ask Jack will return with new episodes beginning in January 2022. And it will be a special year at that, because not only will it mark our 4th season of the podcast, but we’ll be celebrating OMS’s 10th anniversary! Stay tuned for more info on our Season 4 launch date and thank you for being part of our podcast and OMS communities! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E45b Transcript Coffee Break #26 with Pat Feller Geoff Allix (1s): 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 guest 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 . 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. Geoff Allix (46s): Get your favorite drink ready and let's meet our guest. For this episode of the Living Well with MS Coffee Break, I'm glad to welcome Pat Feller from San Diego, California. Pat's a dynamic member of the OMS community who has really transformed his life by following the OMS program and is now in the process of transitioning his career from financial advisor to a certified health coach. Pat, thanks so much for agreeing to take part in our podcast. Pat Feller (1m 14s): Thanks, Geoff. Geoff Allix (1m 15s): Firstly, Pat, our audience would like to know a bit about you and your life. Could you share some background information on where you're from, what you do, and anything about your personal or family life that would give our listeners a sense of who you are? Pat Feller (1m 28s): Sure. Thanks for having me on this podcast. I appreciate it, Geoff. I am a Southern California guy. I was born in Newport Beach, California. No, I didn't surf. I body surf though. I went to the University of Oregon. In my 20s, I bounced around. I spent four years in France, a year in Taiwan, married my wife who is from Hong Kong. We have two lovely daughters, 19 and 16. I ended up in a career in financial services working for investment managers up until my diagnosis four years ago. Right now, we are slowly transitioning to the empty nest phase because we have one daughter in college and our next daughter will graduate for university in a year's time. Pat Feller (2m 20s): That's where I'm at right now. Geoff Allix (2m 23s): That's a high-stress job that you're in, it sounds like. Pat Feller (2m 25s): It was high. Yes, it was high stress. It was high energy, high stress. Yes. Geoff Allix (2m 32s): How about your experiences with MS? Could you tell us a bit about when you were diagnosed, what happened, how you found out you had MS, and how you initially coped with it? Pat Feller (2m 44s): Yes. Like a lot of people, when I look back, I can see when the symptoms started, probably 10 years before my actual diagnosis. I used to be a very ardent runner. Similar to you, I used to run every day four to six miles. I ran a couple of marathons. I'll give you an example. In San Diego County, we have the largest Marine base in the United States. It's called Camp Pendleton. Every June, they hold what is called a mud run. So, you run four or five miles. Pat Feller (3m 26s): They throw you in mud, bark orders at you, and you climb over things. I did this with a team and the first year we did this, I crushed it. I was by far the fastest. Six years later, I struggled to finish it. The other guys were looking at me like, "Pat, what happened?" I had this exhausted look on my face, but as a guy, I never thought to advocate for my health, go to a doctor, and say, "I think there's something really wrong with me." I just thought, "You know what? I'm getting old. This is life." There were progressively more symptoms that should have keyed me in on what was going on, I had no background, no family history with MS. Pat Feller (4m 14s): Like a lot of people, I had one old childhood friend who had been diagnosed with MS. I met him once after his diagnosis and it's like the cliche, "Hey, you look fine to me. You look amazing. What's the big deal?" I look back on that and I feel very guilty. In 2017, I started feeling a lot of symptoms, and then the kicker was, Geoff, in the fall, I got a flu shot in 2017. That just cascaded in one month. Pat Feller (4m 55s): I lost 35 pounds. I went legally blind in my left eye. My short-term memory completely disappeared. I was starting a new job at that time. When you lose your short-term memory and start a new job, that is not good. I was having trouble walking from the parking structure to the office. My balance was off. It was a nightmare. I was misdiagnosed for probably six months until, finally, an optometrist said, "Hey, you're legally blind in your left eye." I went and saw an ophthalmologist and then I saw a neurological ophthalmologist. They then said, "You've got to see a neurologist immediately." Pat Feller (5m 37s): He put me in touch with a friend of his who saw me the next day, ran MRIs, and said, "You got MS." At the time of diagnosis, I was in a really bad way. As a male, Geoff, I was coming off a successful career, a career that, in the financial services industry, I used to travel a lot so high energy, a lot of stress. I could see that my career during that time was probably evaporating because I just simply didn't have the energy to do it. Pat Feller (6m 24s): Plus, my bladder and bowels were a mess, which is a very common MS symptom. Here's the thing. When my transition to OMS occurred, I was immediately put on Tysabri. I've always considered myself a healthy person, so I was shocked. I'm like, "What? I'm not a healthy person? That can't be true," but it was true. I was sitting there in the infusion center, getting the Tysabri, and up until then, the specialists were saying, "We have these medicines. We have these therapies for you to take." Pat Feller (7m 8s): They didn't talk about anything else except these therapies so as I'm taking the Tysabri and it's a very expensive medicine, as a side effect, I felt very disempowered. I felt like a bystander to my health, and I didn't like that feeling at all. Somehow, I forget how I initially came across OMS, but I got the book. In the book, Dr. Jelinek talks about the self-efficacy or the self-agency that comes about when you take steps in your lifestyle, steps with the diet, your eating pattern, exercise, stress management, that you no longer feel like a victim, but then you feel like you have an active role in your recovery. Pat Feller (8m 6s): Psychologically, that's a mind shift right now and that really resonated with me. I thought, "Oh, my gosh, this is a board-certified doctor who is saying this." It was a game-changer for me. That led me to the research of Swank. I came across Dr. Terry Wahls, which is not completely aligned, but from a nutritional density standpoint, it is aligned. It was leading me to a different practice. Right now, this has evolved so that today, I'm really enthusiastic about Dr. Stancic, who also is a triple board-certified MD here in the States. Pat Feller (8m 49s): She has adopted lifestyle medicine. She's not affiliated with OMS, but it's completely in line with OMS. She, similar to Dr. Jelinek, is thriving and that really gets me super excited. I thought, "You know what, what if I transitioned my life, like a lot of people do in the MS world, to try to give back and that it can be part of my health journey?" I'm slowly transitioning to becoming a health and wellness coach as well. Geoff Allix (9m 27s): Yes, I think you are quite lucky in the States really because OMS, certainly until recently, didn't have a big presence in the US. In the UK, I was fortunate because they have a program where they send the book out for free. A charitable donor has funded that. There is a newer version of the Overcoming Multiple Sclerosis book coming out not so long. I think I'm allowed to say that now. Geoff Allix (10m 8s): It's in the relatively near future, but you can get it on Amazon and other places. I would say there are many books. There is funding in the UK so you can get the version. It is expanding and there is more stuff going on. And there’s Aaron Boster, a trustee of the organization, who's a doctor. Pat Feller (10m 45s): I'm very familiar with him. He's at Ohio State, I believe, yes. I did not know about his affiliation. That's really interesting. That's great. Geoff Allix (10m 51s): Yes, he just, in the last couple of months, became one of the trustees. He's very supportive of Overcoming MS. It's just fortunate really. I think the global spread is a good thing. How did you do with the OMS program then? What positives did you see? What problems did you have? Pat Feller (11m 24s): I think it's been very positive, and I'll give you an example. Recently, I went to the University of California, San Diego health system. I'm with a neurologist who I think is very competent, very open-minded, very supportive, and she placed me in a clinical trial that they were testing MS patients, their biological age with their chronological age. They took a lot of blood analysis. Pat Feller (12m 5s): They had a certain number of biological health markers. They had said, "Usually, the variance is plus or minus two years. I am 53 years old, and my biological age is 47 so that's great. I think that tells you something, but please don't get me wrong. Everything's not hunky dory. A lot of neurological damage occurred from which I'm still healing, rehabilitating, repairing so I don't deny that but from a health marker standpoint, from a biological standpoint, OMS is doing wonderfully. Pat Feller (12m 48s): I feel like my cognitive function has improved dramatically, which is so important in the MS world. I've got a lot more energy. I've got a pedometer. I track my steps every day. Yesterday, I ratcheted a personal record this year of 15,000 steps, which might not sound like very much to people out there, but when you've got MS, that's a good thing. I can see the fruit and, Geoff, the wonderful thing is my mindset has changed so that I truly believe that through OMS, I'm healing in a multi-tier systems way. Pat Feller (13m 36s): Our bodies are comprised of all these different systems, right? When I say system, it could be the lymphatic system, the endocrine system, cognitive, our gut health, our mitochondria, all these things. What OMS is allowing me to do is to heal and promote better health outcomes for me so I'm super excited about OMS. Geoff Allix (14m 9s): Something you said before, actually, which was the mindset of doing something. It actually gets called out in the book and it talks about faith. That thinking you're doing something actually makes it more likely that you'll have a positive outcome. That's why when they test for drug trials, they have to use a placebo because, actually, people on the placebo, on average, all get a bit better, even though they're not taking anything but sugar and water, whatever it is. They get a bit better because they think that they're doing something. There was a guy in the UK, it was for the BBC, but he was a lot behind the five-two fasting, I think was one of the things he did, but he also did a thing on the placebo effect. Geoff Allix (14m 56s): Basically, they gave everyone a placebo. They had back issues. They'd been through every form of medication, everything available to the health system. They didn't work. They cured, I think, 50% of these people. They gave them nothing. What they were giving them was just saline drips or something. It did nothing for them basically, and then that 50% of the people who got better, even after they told them that it was a placebo, it still carried on. They still got better because they basically changed their mindset. A lot of those people are still better even though nothing had happened to them medically. The mindset I think is an important thing, which is what you're saying. Geoff Allix (15m 37s): I think the fact that we're doing something actually helps our outcome because we know we've taken on board and we're doing something. We're getting better. We're not passengers to a journey that ends up wherever it may be. We're actually trying to do the best thing. I think that in itself has a positive outcome. You've talked about the good things. How was it going? A lot of people see it as a diet. I don't really like that because it's much more than the diet. Pat Feller (16m 7s): I don't like the word diet, yes. I don't use that word at all. Geoff Allix (16m 13s): How was it actually switching? I presume you switch your diet, maybe your exercise, mindfulness. How was it actually transitioning to doing well as parts of the program? Pat Feller (16m 25s): The exercise was easy because I've always been very exercise oriented. Stress management, actually, I also hired a life coach who, in conjunction with the OMS, has helped me a great deal in managing stress. Then also, with a lot of people, it's so interesting talking about eating patterns, right? Eating pattern, I would like to say, "Geoff, it has been a piece of cake." No. Why? Because what I've learned through the research and my reading is, are you familiar with the term the bliss point? Geoff Allix (17m 9s): No, no. What's that? Pat Feller (17m 11s): The bliss point is what food engineers call the optimum combination of sugar, fat, salt in these ingredients. They're looking for the bliss point, it was sugar, salt, fat, which really makes these foods irresistibly addictive. There's a reason why people have trouble changing their eating. I called it changing their food relationships because, from the get-go, we establish a relationship with food, right? Typically, it's going to be the more processed, the higher the bliss point. Coming out of World War II, the United States needed to provide enough calories for the population, so the food engineers really did a wonderful job. Pat Feller (17m 56s): I would argue that they actually did too good of a job because these foods are so doggone good. They taste so delicious because they're hitting all the dopamine receptors and all that biochemistry going on. I got this from Britain, your Olympic or the Tour de France bicycling team, the aggregation of incremental gains. Are you familiar with that, Geoff? Geoff Allix (18m 31s): Yes. I think most people in the UK would be. I think Brailsford was behind the team. Pat Feller (18m 36s): Yes, and that really resonated with me. I'm like, "Yes, I don't need to ship all at once." I can make these little changes over time and that's what I've been doing. I've pretty much eliminated sugar right now in the process of transitioning. I have been eating a little bit of chicken. I will confess some pescatarian orientation. I'm now going full whole food plant based. It's a journey and a lot of people have to realize if you expect just to turn on a dime immediately, you're probably setting yourself up for failure. Pat Feller (19m 21s): Go for those incremental changes. I'm in a marathon. I'm not in a sprint. I'm in a marathon for the rest of my life. I need to set myself up with small wins and build upon those. In the financial services industry, we call it the...
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OMS-friendly Holiday Cooking on a Budget | S3E45
12/08/2021
OMS-friendly Holiday Cooking on a Budget | S3E45
The holidays are upon us, which for many of us means time spent with family eating a smorgasbord of delicious foods. This highly anticipated seasonal ritual sometimes leads to unintended consequences – expanded waistlines and hefty price tags for all the holiday meals you’ve had to stock up ingredients for. That’s why we are pleased to welcome Karen Lee, the healthy cooking doyenne of , to help us navigate holiday eating in a healthy way that won’t bust the bank. Karen’s Bio: Karen Lee, otherwise known as The Sensitive Foodie, believes that food is the key to health. Karen uses a whole food plant-based diet to manage a variety of health challenges. Karen was diagnosed with multiple sclerosis in 2016 and has been following Overcoming MS program ever since. She is the co-Ambassador for the OMS Circle in Sussex and has contributed recipes and cooking videos to OMS campaigns over the last few years. In The Sensitive Foodie Kitchen, she combines her love of delicious food with her professional background as an intensive care nurse (now retired) and naturopathic nutritionist to inspire others to experience the powerful effects of using food as medicine. Karen runs online courses, workshops and live cooking classes and offers a range of resources on her . She is the author of Eat Well Live Well with The Sensitive Foodie. Questions: Welcome to Living Well with MS, Karen, and it’s great to have you here. Before we dig into the main course, so to speak, can you tell us a little bit about yourself, your experience with MS, and how you got into the healthy food game? What are the main challenges you see people facing when it comes to staying true to the OMS diet while wanting to indulge in some delicious holiday food? You talk in your courses and website about “managing energy”. Can you explain that concept and how it applies practically? You’re a big fan of plant-based alternatives to traditional Christmas foods. Can you tell us some of your main course favorites and where people can find great recipes for them? How about ideas for healthy sides or sauces? How do you spice up veggies or make sauces that are free of meat or dairy but still excite the palate? Many recipes involve lots of ingredients, including things people don’t usually stock in their pantries. That can get pricey. What are your best tips for making healthy and delicious food without going into debt to pay the grocery bill? What are your best tips for making holiday desserts more OMS-friendly without all those elaborate expensive ingredients? Bailey’s is a cream-based liquor that people use to make a Christmas favorite, egg nog. You have some clever ways to make an OMS-friendly version at home. Can you share your secret? You’ve given us some amazing advice on this episode for making healthy holiday foods that won’t drain your savings. I understand you teach many of these techniques through your course offerings. Can you tell our audience a bit about that and how they can learn more if they’re interested? Finally, before we let you go off to do your own holiday cooking, what is your personal absolute favorite holiday meal from starter to main course to dessert? And on that note, thank you Karen for sharing your culinary expertise with the OMS community. Make sure you check out the show notes for this episode for tons of links to delicious recipes, including one for an OMS-friendly Yule Log that is not available online but exclusively available in our show notes. And make sure you visit Karen’s website, The Sensitive Foodie Kitchen. There is some amazing content there, and you can find that link and many others in the show notes, so please have a look. Our next episode will be the last until 2022, so join us for Coffee Break #26 to meet OMSer Pat Feller from San Diego, California and hear about his inspiring OMS journey. Hope you can tune in! Links: Check out The Sensitive Foodie Kitchen . You’ll find new recipes there shortly just in time for the holidays, including lentil and mushroom loaf, sweet potato and chestnut swirl, custard, and a cashew nut version of baked ‘camembert’. Check out Karen’s recipe for . Visit this section of Karen’s site for detailed . Watch (and learn how to) Karen makes . Learn about The Sensitive Foodie’s array of . Check out The Sensitive Foodie on . Check out The Sensitive Foodie on . Special OMS-friendly Yule Log Recipe, Just for You: Coming up on our next episode: Only 1 episode left in Season 3! Next up: on December 13, meet Pat Feller from San Diego, California and learn about his incredible OMS journey on Living Well with MS Coffee Break #26, part of our popular ongoing series introducing you to members of OMS’s dynamic community from around the globe. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. S3E45 Transcript OMS-friendly Holiday Cooking on a Budget Geoff Allix (1s): Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at . If you enjoy the show, please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (44s): Now without further ado, on with the show. The holidays are upon us, which for many of us means time spent with family eating a smorgasbord of delicious foods. This highly anticipated seasonal ritual sometimes leads to unintended consequences, expanded waistlines, and hefty price tags for all the holiday meals you've had to stock up ingredients for. That's why we are pleased to welcome Karen Lee, the healthy cooking doyenne of The Sensitive Foodie Kitchen to help us navigate holiday eating in a healthy way that won't bust the bank. Welcome to Living Well with MS, Karen. It's great to have you here. Before we dig into the main course, so to speak, could you tell us a bit about yourself, your experience with MS, and how you got into the healthy food game? Karen Lee (1m 29s): Yes, certainly. Hi, Geoff and hi everyone. Thank you for having me here. What can I tell you about myself? Well, my background professionally is I used to be an intensive care nurse, but I'm also a mutual and naturopathic nutritionist. And I've always really enjoyed food, loved all sorts of food, but not all food had loved me. So, I had discovered that I had food intolerances, which basically was all my favorite foods. So, I was intolerant to dairy and yeast, well cake and bread and cheese and all those lovely things. Karen Lee (2m 9s): I wanted to feel better though so I started to explore using different ingredients to have all the favorite foods that I had. I'd actually already transferred to eating a whole food plant-based diet, which I discovered whilst I was living in India, which is another story altogether. Right back in the UK, back at work, I suddenly lost sight in my eye, which was an interesting experience, and then subsequently got diagnosed with MS. That was in 2016 so I was already doing the food part of the OMS plan. Karen Lee (2m 53s): Fortunately, one of my colleagues had already told me about the program because her husband followed it. Of course, as we know, they are OMS. It covers not just the food. The food is my favorite bit but it's all how we manage our lives as well, which I wasn't managing particularly well. I started following OMS straight away and carried on developing and looking into eating amazingly tasty food that also happens to be good for your health and that's what I do now, continue making food that I can enjoy. Geoff Allix (3m 33s): What is the Sensitive Foodie Kitchen? Karen Lee (3m 36s): Well, I started off as a Sensitive Foodie so when I first started making changes, I started blogging about it. This was back in 2012 when there wasn't that much around. When I came back from India, I decided I wanted to start teaching other people how to do this. I started off doing cooking demos and classes in my kitchen, hence why it turned into The Sensitive Foodie Kitchen. Whilst some people think it's a catering company, it's actually just a normal kitchen where you make whole food, plant-based food. Then from there, it's just developed into running courses, doing cooking classes, and everything’s online now. Geoff Allix (4m 25s): Okay. We're talking about the holiday season. What are the main challenges you see coming across trying to follow the OMS diet while wanting to indulge in delicious holiday foods? Karen Lee (4m 39s): Well, I personally see this as three different challenges when it comes to this. One is energy levels because a lot of it just depends upon how you're feeling. One of them is the feeling of missing out because there's a lot of tradition to do with holiday celebrations. You have your favorite dishes, and they tend to be full of fats, sugars, and all sorts of things. You want to be able to enjoy it as well, but it's not fair if you feel like you're missing out. The other one is actually other people because it can be really difficult, the attitude towards what they think you can do, what you should be eating, or they get over-anxious about making sure that you are eating what you need to be eating. Karen Lee (5m 25s): Those can be quite difficult, and they can get on top of you. I think a lot of it is really just knowing what it is that you want to do and having a plan. I always say that to people, but I'm actually one of the worst planners. Even if the plan is in your head about the sorts of things that you want to eat and thinking ahead about, "Okay, well, I haven't got much energy every day so maybe I can make a few things or get someone else to make a few things." It's just really thinking about what this event is, whether it's over a few days or just one big meal. Karen Lee (6m 8s): Like I say, just really thinking about what it is that you want to eat and how you're going to achieve that. Geoff Allix (6m 30s): I think that I'm thinking now, because a lot of things can be frozen, so we're recording this the end of October, sorry, November, end of November. And, and I'm thinking I, I make a vegan Wellington and I think, okay, I'll make two vegan Wellingtons. I'll freeze them because they freeze really well and easily. And then that will be my sort of main dish. And then, because I've got like a week off, so there'll be like a couple of meals, like where I can have that. And then there's a few other things and I know that they're quite easily freezable and so I can do them over a number of weeks and put them in the freezer. Geoff Allix (7m 9s): And then that's much, much easier on the day. Then you talked about energy because, and you mentioned on your courses and website about managing energy. So, what's, what do you mean by that? What's the concept of managing energy and how does that apply practically to this sort of thing? Karen Lee (7m 30s): I think as with a lot of people with MS really struggling with fatigue and just only having so many things that they can do in a day. Again, I tend to judge people by how I am, but I want to still be able to do everything. Some of the time, it's just a matter of stepping back and saying, "Okay, I want to do all these things, but actually, I also want to enjoy myself." Enjoying yourself needs as much energy as doing all these things as well. A lot of it is just being really realistic and saying, "All right, at the minute I know if I spend this time making this and having it ready,” then as you say, all you've got to do is reheat it, have it done, and then “I'm going to have time to celebrate and socialize” because that's exhausting as well. Karen Lee (8m 25s): Talking to people, having children around that we're really excited by it can be quite tiring and you have a big meal at lunchtime may be, and then everyone can have a legitimate snooze in the afternoon. It's not always possible to be able to rest when you might need to rest. You lose that enjoyment and then you start feeling like you're missing out as well. My children are a bit older, they're in their early twenties and they've got their own things that they want to do when it comes to our Christmas celebration. Obviously, this can apply to any celebration. One of the things that we do now more is that we have our main meal on Christmas Eve. Karen Lee (9m 10s): We do all the food and everything, and then on Christmas day, we have all the leftovers and the reheated, so we've got time to open the presents, to have a couple of drinks, and have a much more relaxing day rather than rushing around and preparing this food and that food. it's just really working out what works for you so that your energy is at a level where you can just enjoy yourself and have a lovely family time, whatever that celebration is. Geoff Allix (10m 1s): Yes. There's a spoon concept or spoon theory that comes up a lot. You get so many spoons a day and everything has a cost in spoons. Karen Lee (10m 10s): It does. Geoff Allix (10m 12s): I find that I think with MS, you reset overnight. You have a night's sleep and you've got back your amount of spoons. I think it was originally someone just trying to explain the concept and they had some spoons around. They just said, "Well, imagine you had this many spoons," but actually cooking dinner. That's going to cost you some of those by doing that. By the time you get to the evening, and you want to actually meet up with some friends, you've got no spoons left, then you're going to be shattered. That's so true. I think that if I'm doing something later that I want to do that is enjoyable, then maybe I'm not doing as much exercise during the day because if I really work out hard exercising, I know I'm not going to have much energy left then or timing when I do exercise is another thing. Geoff Allix (10m 55s): I don't exercise first thing in the morning anymore, which I used to do because I know that maybe something will come up later and I'll just be shattered. Now, I think, okay, well, I'll make sure I've got everything I need to do during the day and then I can exercise. If I've got nothing left, I've just got slumped on the sofa and I'm fine. Karen Lee (11m 15s): Absolutely. The concept is great. Also sometimes, if you give yourself permission to take that rest in the day or to do something in the day, you can replenish your spoons as well. It could be that if you're busy, you've done a few things, you actually then either go and have a power nap or do a meditation. I find just switching my brain off for 15 minutes or so because it's a very busy place in there, that can rejuvenate me. Sometimes, it's actually going out for a walk. I've found that in lockdown, because I'm working from home all the time, sometimes I just need to get away from the computer. Karen Lee (11m 60s): I can feel exhausted but if the sun is shining, if I go out for a 15 or 20-minute gentle walk, it's great. It's rejuvenating. I think energy is something that is quite personal as well in how you revamp that. That goes the same with all these celebrations. It's just, again, coming back to the planning and really just thinking about what it is that's going to work for you and not being afraid to ask for help. I think that's really important, particularly if you are the one who is expected to be the main chef for all of this, which is fine. Karen Lee (12m 47s): You may want to do some rule of it, but equally, there's no shame, harm, or actually it's really good to get other people involved in it as well. If you want to, just dish out jobs to people. It might not be that you want everybody in your kitchen all at the same time because that can also be tiring, but send somebody off with the brussels sprouts to peel, for example, or send somebody out and give someone else the potatoes. We send them off into a different room, but don't be afraid to ask for help. Geoff Allix (13m 27s): You're a big fan of plant-based alternatives to traditional festive food. Can you tell us some of your main course favorites and where you can find recipes for those sorts of things? Karen Lee (13m 42s): Yes. Personally, I don't go for the processes fake meats. I like to eat whole foods so one of the standard options is a nut roast, which sounds a bit boring, but you can always talk it up a little bit by putting some extra ingredients in the middle, whether it's a cranberry source, some garlic mushrooms, greens or whatever it is. You can make it a bit fancy pants but also, I like to use traditional seasonal flavors. I might do a chestnut and sweet potato with some winter spices in that, and then wrap it up in some filo pastry to make as well. Karen Lee (14m 32s): It looks posh but it's not that difficult to make and you get that nice mixture of textures and flavors in there as well. Those you can make, and you can find the recipes for these on my website. Also, there's a lentil mushroom loaf as well because obviously, some people can't eat nuts or choose not to eat nuts. If they want to avoid too much fat, there's a lentil and mushroom one. With mushrooms, it seems to be much easier to find a nice selection of them now. You can find shitake mushrooms, mixed woodland mushrooms, or even just rehydrate some dried ones so that you get these lovely, different flavors and textures. Karen Lee (15m 18s): The other one that we do sometimes is a vegan haggis. Geoff Allix (15m 26s): That's the least MS-friendly foodstuff, certainly. Karen Lee (15m 37s): Yes, I know. It is but it's not. We discovered this when we were up in Edinburgh a few years ago. There's a vegetarian vegan restaurant out there called Henderson's, which I think is quite well-established. They had this haggis, but it's made from lentils, oats, and things, so it's a really nice rich flavor. You could just have it as it is, but also again, you can then wrap it up in some filo pastry to make a nice little haggis parcel or I'd make pastry where either you can add in a little bit of olive oil, a nut butter, or tahini, something like that. Karen Lee (16m 20s): You are replacing the fat, the lard, or whatever it is in pastry with a whole alternative or a slightly healthier one if you're using olive oil. This is a problem if you want to buy things in the shops. The seasonal celebration foods are really full of saturated fat, pastry in particular. Now, I used to love puff pastry, but even though you can find it without dairy, it's locked with loads and loads of different refined oils. You just look at the level of saturated fat and just that one tiny bit of puff pastry has an excess of highly saturated fat. Geoff Allix (17m 11s): What you said about filo pastry, because filo pastry in my mind is impossible to make yourself. It's so thin but most filo pastry, when you look at it in a shop, it has very few ingredients. It's really just flour and water and not much else at all. I think if people are avoiding gluten, that might be harder, but certainly, if you're okay with gluten, you can actually just use sheets of filo pastry and then just put...
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Coffee Break #25 with Nicole Zobrist | S3E44 bonus
11/29/2021
Coffee Break #25 with Nicole Zobrist | S3E44 bonus
Welcome to Living Well with MS Coffee Break #25, where we are pleased to welcome Nicole Zobrist 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 . We hope you enjoy this episode’s conversation with Nicole, coming to you straight from Portland, Oregon in the Pacific Northwest. Nicole’s Bio: Nicole Zobrist lives just outside of Portland, Oregon with her husband and six-month-old goldendoodle. She was diagnosed with RRMS in April 2020 and found OMS shortly thereafter. She enjoys cooking and baking OMS-friendly recipes, reading, hiking, a great micro-brew, and everything else her local community has to offer. She also is the ambassador of the Portland, Oregon OMS Circle. The biggest change she’s made since her MS diagnosis is finding ways to manage stress – which led her to quit her job and become self-employed. Questions: Nicole, 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. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? I understand that stress management was one of your biggest challenges in adopting the program, and it led you to make some serious life changes. Can you tell us a little more about that? What are some of the other challenges you’ve faced at first in adopting the OMS program? How did you overcome them? When did you first start to see any kind of positive indicators in following OMS guidelines? What were these? You’re currently very involved in the OMS community, particularly as the ambassador of the OMS Circle in Portland, Oregon. Can you talk to us about the OMS Circles experience, and what that’s meant to you? I also understand there’s a new online platform for Circles, so perhaps you can share a little about that experience, too? I learned that you’re passionate about healthy eating. Can you share a little more about your foodie persona, and perhaps some tips to achieving healthier eating habits that have worked for you? Nicole, we are ever so grateful for you 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Three Nuggets of Wisdom Straight from Nicole: Everybody’s experience with MS is different. Lifestyle modifications can be such an important tool in dealing with MS. It doesn’t have to be “all or nothing” if you’re working towards living a healthier life. I’m passionate about this because it’s something that feels like I can control when MS feels so unpredictable. Finding community online has been so beneficial. It makes me feel like I’m not alone, especially since I was diagnosed during Covid and haven’t had many opportunities to meet people in person yet. This is one of the reasons why I wanted to start a Circle in my area as well. The online resources are great but I’m looking forward to building an in-person community as well. Nicole’s Links: Check out Nicole’s Read the Nicole wrote for OMS. Coming up on our next episode: Only 2 episodes left! Next up on Living Well with MS: with the holidays closing in, you’ll want to tune in starting December 8 to meet Karen Lee, the healthy cooking doyenne of , who will help us navigate holiday eating in a healthy way that won’t bust the bank. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E44b Transcript Coffee Break #25 with Nicole Zobrist Geoff Allix (1s): 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 guest 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 . 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. Geoff Allix (45s): So, get your favorite drink ready and let's meet our guest. Welcome to Living Well with MS Coffee Break #25 and please welcome Nicole Zobrist as our guest. Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you're joining me for an intimate chat with a 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 welcome by emailing , or you can reach out to me directly on twitter @geoffallix. Geoff Allix (1m 26s): We hope you enjoy this episode’s conversation with Nicole coming to you straight from Portland, Oregon in the Pacific Northwest of the US. Nicole Zobrist lives with her husband and six-month-old golden doodle. She was diagnosed with relapsing remitting MS in April 2020 and found OMS shortly thereafter. She enjoys cooking and baking OMS friendly recipes, reading, hiking, a great microbrew and everything else her local community has to offer. She is also the ambassador of the Portland, Oregon OMS Circle. The biggest change she's made since her MS diagnosis is finding ways to manage stress, which led her to quit her job and become self-employed. So, Nicole, welcome to Living Well with MS Coffee Break. Nicole Zobrist (2m 9s): Thank you. Geoff Allix (2m 9s): We're 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. So, could you tell us a little bit about your day-to-day life? Nicole Zobrist (2m 23s): Yeah. So, you went over the basics. I live in a really great part of the US, lots of really great outdoor activities, weather permitting. Right now it's fall, so the rain has come today. With that came a lot of great changes in the leaves and stuff. But so day-to-day, I am an accountant by trade. So, I recently quit my job, I guess earlier this year, to become self-employed so I could manage my stress and my schedule a bit more. Being in accounting we had a lot of deadlines and that doesn't always bode well for work-life balance and stress. Nicole Zobrist (3m 4s): So, I went into business with my mother-in-law, helping small businesses with their finances and accounting and what have you. And then when I'm not doing that, I get to spend a lot of time with my husband and my dog. My husband is also self-employed, so we like to go on bike rides, go on hikes, spend time with our families. Yeah. Geoff Allix (3m 31s): So, you were diagnosed with MS about 18 months ago, was it? Nicole Zobrist (3m 35s): About a year and a half. Geoff Allix (3m 37s): And so, could you tell us a bit about that and how you initially dealt with your diagnosis? Nicole Zobrist (3m 47s): Yeah, so in April 2020, I got really sick. I was dealing with a lot of nausea, vertigo, and then thought I just had a really terrible stomach bug, but then I started to experience some numbness in the right side of my body, which just started in my hands and then slowly spread up the side of my neck and face. And that's what took me into the hospital, because then I knew it was something a little bit more serious than a stomach bug. And I was really fortunate to receive my diagnosis the same day I went into the hospital, which I do feel like listening to this podcast and other people's stories is really rare. Nicole Zobrist (4m 27s): So, I felt relieved to have an answer so quick. And I, whenever, you know, when you consult Google for what's going on with you, when you talk about tingling and vertigo, MS is one of the things that came up. So, it wasn't like I was completely blindsided. So, there was just relief to have an answer and just have answers so quick. And I feel fortunate that the, all the doctors and the staff in the emergency room were very kind, took me very seriously. I remember the nurse telling me that I would be okay. She had a friend who was in her sixties who had MS. Nicole Zobrist (5m 7s): And she still golfed all the time. And so, I just, I felt hopeful. It didn't have that same level of dread. I mean, obviously I was still very nervous about the uncertainty of it all. And my uncle, he also has MS. And he lives a pretty normal life. So, I didn't have like this negative image in my head of what MS might look like. So that just, I think that equipped me to figure out how to live with this news and make the most of it. Geoff Allix (5m 42s): Yeah. I think the whole diagnosis thing is-- the healthcare systems around the world are so different. And so, I came across recently, someone who said that the medication they wanted, they couldn't-- they're in the States and they couldn't get the medication they wanted because their insurance wouldn't pay. And which to us in the UK is really weird because we get free healthcare, completely free. So, if something works effectively, then we can have it. But the diagnosis takes months. So, it's sort of, okay, private system, yeah, it's really quick. But then you might have to pay, or you might find it's not covered by insurance and all, but actually you get some medications you can have that we can't, because if our health system has decided for whatever reason that they're not cost-effective enough, then they're just not available. Geoff Allix (6m 32s): So, it's, there's nothing you can do unless you literally pay the entire cost yourself. You wouldn't be able to. And even then, I don't know if you can, it's really difficult. So, it's that, tradeoffs. There's got to be a perfect country in the world that has everything. Just seems to be a bit of a lottery about where you are. So, when did you come across OMS and why did you decide to follow the Overcoming MS program? Nicole Zobrist (6m 60s): Yeah, so I was trying to think about when I specifically discovered OMS and it was shortly after my diagnosis. After I found out I had MS, I think I did what a lot of people did and just started combing through as much information as I could on the internet. And then I stumbled across OMS, devoured the website, read the book. And I think OMS really appealed to me because I was looking for more than just a medication. I knew I wanted to be on medication, but if there's other things I can do to give myself the best shot I wanted to do those things because I'm only 29. Nicole Zobrist (7m 40s): So, I have a lot of life to live with MS, and I'm hoping that it will be, you know, just the same, despite the MS. So, I think when I found the OMS website, read the book, that was the first time I felt like there were things I could do to take some control back rather than just doing what my doctor would tell me to do. Of course, that's important, if you agree with what your doctor is saying. And, but if there's other things I can do, then it felt well worth it. And I was already mostly vegetarian. My husband's been vegan for about five, four years, so that, I guess it wasn't a huge strain to just make those few tweaks and cut out cheese and eggs, because that was pretty much it. Geoff Allix (8m 32s): And if your partner is already -- that's really so much easier because if they're already vegan, then you don't have to sort of cook two meals or anything like that. Nicole Zobrist (8m 42s): Yeah, exactly. So, I recognize that that was, I am fortunate in that regard. Geoff Allix (8m 47s): Yeah. And so, we mentioned stress management. So, can you tell us a bit about the stress side of things and how you dealt with the stress of MS and life? Nicole Zobrist (9m 3s): Yeah, so I used to, I'd like to think that I do a good job of handling stress, but in reality, it still takes a toll. Before I had my MS diagnosis, I was in public accounting, which I don't know how it is in the UK but it can be a really stressful and demanding career in the States. And I enjoyed it, but it was stressful. You're working with a lot of deadlines. I think a lot of jobs in accounting, you have month end and year end deadlines. And I just found myself, I wasn't in public accounting anymore. I was in another job doing accounting work and it was around the end of the year, dealing with deadlines, that I had a relapse. Nicole Zobrist (9m 49s): And I just felt like I couldn't, you just feel bad telling your work, "Hey, I'm not feeling well. I need to take some time off." Even though that's what you need to do for yourself to rest and recover. So, I just knew that I needed to have a job, have a career where I could have that control and I didn't have need to have the extra stress of feeling guilty when I needed to take the time to take care of myself. So that's been a huge change just recognizing that, you know, you can't avoid all stress, but it takes a toll. So, if you can kind of change your life a bit or your career a bit to better manage that then, it's probably for the best. Geoff Allix (10m 32s): Yeah. I had the previous role where I, it was lecturing people, standing in front of people and things like that. And for a long period of time and I really liked the feeling when I finished. And then, and it was only after a while that I thought, I thought I really enjoyed this, but actually I thought, hang on. The best feeling is the feeling when I stopped doing it. It's that relief when I stopped doing it. And you think that's not really a positive thing. I'm basically enjoying the feeling of no more stress. So that's not a positive, but I'm putting myself under loads of stress, then enjoy the feeling of when it stops is like, it's almost doing yourself harm to enjoy the feeling of it stopping is not really a positive thing. Geoff Allix (11m 15s): So, yeah, I agree. Yeah. I think stress is one of the big things. And so, I mean, are there other challenges you had in adopting OMS? Nicole Zobrist (11m 26s): So, I think I'm not alone in saying, so speaking of stress management, meditation has been something that I've struggled with. Not so much, I actually enjoy the act of meditating and I recognize the benefits and I know when I can be consistent with it, I really do. I feel that that's a positive thing. I just think having the discipline to make time every day has been something I struggled with. But I think that I've heard before, if you don't think you have time to meditate, then that probably means that you need it the most, which I feel is true. So, I think that's been just the refining, just making a routine of meditation has been challenging. Nicole Zobrist (12m 8s): But I do feel like, you know, I journal, I started doing yoga maybe six months ago. So, I think there's other aspects of stress management and having that mindfulness, you know, you can still do that. Geoff Allix (12m 22s): Yeah. I think those things count as well. I think, I mean, journaling is a form of mindfulness and yoga is certainly, and I mean, you said about things like hiking. Hiking, you can, I used to hike a lot and basically you can walk around getting completely buried in your work or stress or worries, or you can actually enjoy the outside and the environment and clear your mind and really enjoy nature. And that's mindful. So, you can mindfully walk and that counts. I think. All those things count, you know. It's not just, you know, the sort of, oh, I need to set aside half an hour and it's going to be between 9 and 10am. Geoff Allix (13m 7s): There's a guy I met, Alex, not Alex Twersky who is the guy behind the podcast. Alex Tsirigotis, and he's a marathon runner, who's got MS and follows OMS. But he was saying, he's so competitive that he started to really get stressed out about having streaks on his mindfulness app. Because it was telling him he'd got back a streak of 25 days or something. And he started getting stressed out about doing mindfulness. So now he actually deliberately throws in a day off to make sure he's not building up a big streak that he'll worry about. Because otherwise he starts to get stressed out about mindfulness. Nicole Zobrist (13m 43s): That defeats the purpose, right? Geoff Allix (13m 46s): So, I got to think, it's not just about having that half hour. You can just live mindfully and that's cool. So actually yeah. Doing those mindful activities, they all count, I think. So what are some of the benefits that you've had then? When did you start seeing positive things from the OMS program? Nicole Zobrist (14m 11s): It's hard to really pinpoint when, because I started following OMS so soon after my diagnosis, but I know that like, I haven't had to deal with fatigue at all. So, I don't, you know, and I know there's been a lot of positive evidence saying that, you know, a low saturated or a diet low in saturated fat, plant-based can help with fatigue. So, I am not, it's been working, I haven't dealt with fatigue and really severe symptoms. So, I'm not apt to change things because I feel like, you know, whatever I am doing is working. Nicole Zobrist (14m 53s): But aside from the physical benefits of OMS, there are the mental benefits. I just feel like if I have tangible steps I can take to live a healthy life, and really there are things, I know you've mentioned before on the podcast things you should probably, you should be doing anyways, despite MS. So, I think that positivity in that hopeful outlook is something that I have really noticed with OMS. Geoff Allix (15m 22s): Pretty much, apart from the disease modifying drugs, you should be doing all of it. Every effort, pretty much everyone would be healthier if they did the OMS program, discounting the drugs. because it's just like it's, I mean, that's what my neurologist said. He said, there's no proof there that it will help with MS because it's unlikely to be proved because it's really difficult to do double blind trials on whether you're eating cheese or not. But he said, this is just going to make you healthy. He said, literally, everything you're doing is not bad for you. So, if you have a...
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Empowering Advocacy | S3E44
11/17/2021
Empowering Advocacy | S3E44
Empowerment is one of the strategic pillars of the Overcoming MS charity, and advocacy is a practical way in which we realize this goal. Living Well with MS is honored to welcome two of Overcoming MS’s newest trustees – and – for a special roundtable discussion on how advocacy is put in practice. This episode dives into the mission of advocacy and how we put it in play by developing tools and resources to enable OMSers to have confidence in talking about OMS to family, friends, health care professionals, and others. Helen’s Bio: Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition. She discovered OMS in 2008 and has followed the program ever since. In 2021, Helen joined the OMS Board of Trustees. Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors. Helen has never taken medication for her MS and is committed to living well through active self-care. Alison’s Bio: Allie is originally from Edinburgh but now lives in Surrey. While living in London in 2004 she had her first MS episode, but it was not until 2011 that she was formally diagnosed. Living in limbo for seven years, she buried her head in the sand and hoped nothing more would happen, but optic neuritis led to a formal diagnosis and the necessity to accept that MS was to be part of her life. Not willing to sit and wait for the next episode, she found Overcoming MS a few months later and has never looked back. Since finding OMS Allie has supported the organization in many ways, and in 2018 became an ambassador for the OMS Circle in Surrey. Supporting the organization that has given her so much after diagnosis and enables her to live a full life is important to Allie, and why she applied to become an ambassador. Allie lives with her partner, Neil, and is lucky to be able to work full time as a Salesperson for an IT consultancy. She enjoys spending time in her garden, running (slowly), and is looking forward to returning to Covent Garden Royal Opera House to enjoy the opera in the autumn. Themes: What is advocacy? What does it mean for the OMS community? How do we do out it in practice? What is the OMS Advocacy Group? Where can you begin? How do we measure success? Empowerment begins with OMS listening to and learning from the diverse experiences of our community: we’d love you to help us shape this work. See below for more info on the advocacy section of the OMS website. Recommended Links: Check out Overcoming MS’s new on our website. Coming up on our next episode: Only three episodes left in Season 3! Next up: just in time for Giving Tuesday 2021 and starting November 29, meet Nicole Zobrist, the ambassador of the OMS Circle in Portland, Oregon, on Living Well with MS Coffee Break #25, part of our popular ongoing series introducing you to members of OMS’s dynamic community from around the globe. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. S3E44 Transcript Empowering Advocacy Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at . If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (44s): Now without further ado on with the show. Today's podcast is different to every other one that we've had so far in that we have two guests, and we're going to discuss advocacy. And joining me today are Alison Marwick and Helen Rees Leahy. And I'm going to get Alison and Helen to introduce themselves. You may be familiar with Helen; she's already been a podcast guest. I believe it's season two, episode 30 off the top of my head. But there's a podcast about PPMS with Helen, but to start off with, would you like to, well, firstly, welcome and could you introduce yourself, Alison or Allie? Alison Marwick (1m 31s): Thanks, Geoff. Yeah, delighted to be here on this podcast today and talking a bit about advocacy. So, my name's Alison or Allie Marwick, I have relapsing remitting multiple sclerosis, and although I was formally diagnosed 10 years ago in September 2011, I had my first episode in 2004. So, I've been living with the disease for the past 17 years. I'm fortunate in that I found OMS within about a month of diagnosis, which was great because during that period, I was probably depressed having gone going through that grief cycle of being diagnosed and not really knowing what to do, but I was physically well, I was mentally well, but I had this, what I felt was, you know, a hideous disease and that my life was over. Alison Marwick (2m 36s): So, finding Overcoming MS within a month was hugely empowering and gave me so much hope. And it enabled me to really take steps in my life that I had been afraid to before. I had been told in 2004 that I probably had MS, or it was highly likely, I think they phrased it, but I pretended that it wasn't there. And I just was living in denial and in fear. And what OMS gave me was that ability to not be fearful anymore, to have hope that I was able to manage my life and that it wasn't over. And I could do all the things that I wanted to do by following the program and have great health outcomes. Alison Marwick (3m 19s): So that's, you know, that's kind of my story in terms of OMS and how I found it. And I, ever since then, I've been passionate in wanting to support the organization, support other people who are following the program or looking at or interested in following the program. So, I've been an ambassador for Surrey, which is where I lived for the last three years, which has been hugely rewarding. And, you know, we've got an active circle here, which has been great fun and, you know, helping and working with others who are following the program. Geoff Allix (3m 52s): Excellent. So also joining is Helen Rees Leahy as mentioned. So, Helen, could we have a quick intro from you? Helen Rees Leahy (3m 59s): Hi, Geoff. Hi, Allie. Hi, everybody. Thank you very much, Geoff, for asking both of us to come on to talk about advocacy today. I'm Helen, Helen Rees Leahy. I was diagnosed with primary progressive MS in 1997. So, I've been living with MS now for nearly 25 years. And as I had a diagnosis of primary progressive from the outset, I have had that course of increasing progression of my illness. I discovered OMS a long time ago, actually. I mean, I think it was something like 2008 when Professor George Jelinek published one of his very early books outlining the backbone of the OMS program. Helen Rees Leahy (4m 46s): And I seized upon that. I have never been eligible for a disease modifying therapy under the UK NHS system. So, I've always been managing my MS through my own actions and agency, and like Allie discovering the Overcoming MS Program was a tremendous support for me and indeed it supported me throughout my time, my life with MS and continues to do so. So, I think I'm very touched by what Allie says about, you know, overcoming fear and anxiety. And that's something I'd like to come back to. I think in the course of this conversation, the importance of the program, not only in enabling us to lead very healthy lives, as healthy as we possibly can with this condition, but also the emotional, the mental, the psychological support that it gives us in terms of becoming less fearful, becoming less anxious about our conditions. Helen Rees Leahy (5m 51s): And that's very much, I think, at the core of the advocacy initiative, the ways in which we can really realize the goal of empowerment, empowerment for ourselves and for each other as a community of people living with MS, following the OMS program. Geoff Allix (6m 13s): Can we start out just as a basic, what is advocacy? To start off with. I think a lot of people won't have heard the term too much. So, could we just define advocacy and the types of advocacy as well? Who wants to take this one out? Helen Rees Leahy (6m 29s): I'll kickoff, but Allie, I know will come in there as well. I mean, that's right. It's perhaps a rather abstract word. We relate it as I was suggesting a second ago, very much to our strategic goal of empowerment within OMS and really what it is, is making the case for the OMS program. So, if you think about it this way, I think as an organization, we're very good with information to go into the website. There's a massive amount of information about the program, how to implement it. You know, your questions are answered there, but we know that living with MS is challenging and convincing other people of the benefits of following a program like Overcoming MS. Helen Rees Leahy (7m 16s): It can also be quite challenging. Maybe those, it could be family, friends, it could be your healthcare professional. They don't always understand the program, they don't always see the benefits that we ourselves perceive from it. So, it's making a persuasive argument and it's finding the words and the confidence to make the case for following the program. Sometimes in perhaps what might be quite difficult or challenging situations, you know, where you need to be persuasive. It's beyond information. It's a process of a persuasion. And I say, we can do it for ourselves. We can also do it for each other as well. Geoff Allix (7m 58s): And Allie, do you have anything to add to that? Alison Marwick (7m 60s): Yeah, I would agree with that. I think, you know, there are two keywords there that Helen references: empower and confidence. You know, giving people the tools and the techniques and the confidence to be able to talk about their own diagnosis, talk about their own choice to follow the program and the benefits that that's shown. We know from the community engagement survey data that was, you know, we're currently trawling through as an organization, that a lot of people struggle with talking to healthcare providers, talking to their friends and family, but having your friends and family on side is a huge support network. Alison Marwick (8m 43s): It's really important. And we knew that you, having the confidence and the ability to be able to articulate what it is that you're doing and why, and not have to be defensive and constantly, you know, people going, oh, go on just to have a wee bit cheese or whatever. And so, it's about, we want to enable people to have that confidence, to have that ability, to have those conversations in any environment, whether it's friends, families, healthcare professionals, work, those sorts of areas that we'd recognize, but we maybe need to provide a bit, a few more tools, techniques, and support in order to be able to do that. Geoff Allix (9m 20s): Absolutely. I think I bet anyone who's got MS and following OMS, I think will be familiar with this. I think, I consider myself very lucky in that my neurologist is very supportive, but I've certainly had many stories of-- probably isn't fair to say, old school neurologists, maybe more traditional, if you like, who really are very much of the opinion, you take the medication and you live life. Literally, I think the phrase did come up like, you know, you've got MS, you don't want to make things any worse and just enjoy life while you can. Geoff Allix (10m 1s): And it was some really cutting remark like this I've heard, but actually when you look at some of the top neurologists, you know, some really leading neurologists, they are almost entirely of the opinion that lifestyle is a factor and living a healthy life will have an effect on your MS prognosis. So there is definitely, if you've got an up-to-date, if you like, neurologist, they seem to be very pro the OMS approach, but yeah, there are still some more traditionalist and equally person to person as well, because I think all of us will have come across someone who I think you said, why not just have a little bit of cheese, and that is absolutely the case with some people. Geoff Allix (10m 49s): Again, I feel very fortunate. My family and friends are generally very supportive, but it still happened, you know, a little bit won't hurt sort of argument. So how is advocacy particularly important to the OMS community then? And to the broader MS Community? Helen Rees Leahy (11m 14s): For me, that's all about individual and collective agency. So, when any of us has a diagnosis of a condition like MS, as Allie was saying, you know, there can be very devastating concerns. And, you know, people of course react in very different ways, but it's, you know, it's a profound change in anybody's life. And in fact, it can be a very traumatic period for people, but what the OMS program does not only, you know, is provide a toolkit to enable us to lead a healthy life. Helen Rees Leahy (11m 56s): It's also a means of covering our own personal agency of taking control, of feeding that something that we can do and in time, you know, perceiving the tangible benefits of following the program. So, for me, it's that process of taking control, which I think is so incredibly powerful. That is why we believe, of course, the Overcoming MS Program is so valuable in all of our lives and combined elements of it is a kind of more than the sum of the parts. So, I think we know this as individuals, but perhaps as a community, we haven't been quite as clear in articulating that within the MS space more generally. Helen Rees Leahy (12m 46s): So, I think it's about within the OMS community, becoming more empowered, connecting with each other. And as I say, becoming a stronger voice for the program within the MS space. So, as you say, Geoff, with a healthcare professional, who's a little bit skeptical, with a family member who, you know, is perhaps questioning why somebody with OMS needs to have time and space for meditation or stress reduction, why family food might need to change. So, I think it's about increasing confidence, increasing empowerment, and doing this collectively. We're not expecting, you know, sort of magic wand that any one individual can do this by themselves. Helen Rees Leahy (13m 30s): So, it's one of the ways in which we want to become more connected as a community as well. Geoff Allix (13m 40s): And how can you advocate by using your own experiences? What approaches have you had for that? Could ask that to Allie if--. Alison Marwick (13m 53s): Yeah. Yeah. So, I think a lot of OMSers are naturally advocates because, and you've had many of them here doing podcasts and talking passionately about how following the program has transformed their lives. And as Helen said, not just from a physical perspective, but from a mental perspective, and how they feel about themselves and their own empowerment. So, we can all be advocates just by, you know, talking about our own experiences. And Helen, I'm sure you experienced this as well, but when I meet new people and you're having food in a restaurant or something, and everyone was like, "Oh, what can you eat?" Alison Marwick (14m 37s): Why do you do that? Like, well, this is why, and this is, I've lived with this disease for, well, had a diagnosis for 10 years. I've followed this program for 10 years and I am in remission and everyone's like, wow. And they get it, you know, some people want to know more. Some people are like, oh, difficult subject, don't want to talk anymore. But I think everybody can be an advocate. We're not, what we're not saying here is everyone has to be. But I think by default, just by having conversations with your family and with your friends and by living your life, people will see that there's something there that you can, that you've got the confidence, you've got the ability and the, you know, you're managing your disease. Alison Marwick (15m 22s): Helen, I don't know if you want to add to that. Helen Rees Leahy (15m 26s): Yeah. I think you're absolutely right, Allie and I think the only thing I would add to that is for me, it's, as you say, our own kind of personal stories can be very powerful. And there's an idea which is becoming increasingly accepted and talked about within healthcare systems here in the UK, but also in other parts of the world as well. And this is the idea of experts by experience. It's the idea of the so-called patients being a kind of co-creator of their own kind of treatment plan and parts and acknowledging that alongside the medical model of medical knowledge and research, there are other forms of insight, knowledge, and understanding, which come from the lived experience of an individual and a group of individuals. Helen Rees Leahy (16m 21s): And it's particularly true with kind of chronic conditions, such as MS. For me, it's more than just our own individual stories. It's actually reflecting on what we've learned, what we learned from those experiences and actually looking for what we have in common, because we know as we've said in this conversation already so far, each of us has a very distinctive experience of MS. And sometimes, you know, your experience is nothing like my experience. Let's put those differences to one side and focus more on what we have in common, what we learn, what we can learn jointly. Helen Rees Leahy (17m 9s): And I should say, acknowledging both our vulnerability, but also our agency, our vulnerability I think, is what we get from MS. And I think our agency is what we get from OMS, from Overcoming MS. Geoff Allix (17m 20s): And just as an aside, I mean, I find a lot of people who follow OMS and certainly myself, people always say, you look really healthy, and you look really well. And I've heard that from a lot of OMSers that people are always commenting. How well we look, and I said, I always say, well, yeah, apart from the obvious then yeah, I do actually feel, I think it does actually my sort of ex-- lived experiences that I am definitely healthier apart from the fact of MS. And that my healthcare providers are on board with that, and they said, yeah, I noticed that you're living a really healthy life. Geoff Allix (18m 0s): You're doing exercise, you're eating a whole food diet, which is good, stress reduction, good. All those things are good things. It's not a, we're not doing some sort of really weird, out there, sort of unusual remedy. These are well founded, healthy things to do. Helen Rees Leahy (18m 21s): Well. I think that's exactly right, Geoff. And if you had diabetes or a particular heart condition, much of the kind of advice that we follow in OMS would be recommended to you by your healthcare professionals, without any question at all. It's orthodox, it's standard practice. As...
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Ask Jack #5 | S3E43 bonus
11/10/2021
Ask Jack #5 | S3E43 bonus
Welcome to the season finale of Ask Jack, featuring the prodigious culinary talents of professional plant-based chef and writer answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Ask Jack will return in 2022 for its second season, where we will feast on even more of our community’s questions about all things cooking and eating in an OMS-friendly way. You can submit your questions for Jack anytime by emailing them to . Introduction In this episode, we have curated a set of commonly asked questions around holiday cooking. With the onslaught of the holidays upon us, people following the OMS program face major challenges in making traditional holiday recipes compliant with their dietary choices under the OMS program. Jack has had ample experience in navigating this narrow channel of healthy eating and holiday food fun, and what he’s learned and hopes to convey to you is that following OMS dietary guidelines doesn’t mean you have to forgo the joy of yummy holiday eating. So, let’s dig in! Questions How do I keep from 'cheating' when I'm around family and everyone is eating food I can't eat or enjoy? Do you have any ideas for sweets I could make for the holidays? Sweets I can take to the office party and enjoy at home with my family? Do you have any ideas for an OMS-friendly holiday roast? This is my first year with MS, I'm new to OMS and I am struggling to come up with ideas for food I can enjoy during the holidays? I'm confused about chocolate and what is allowed on the OMS diet. Can you explain what I can and can't use to make my desserts? I want to make pie this holiday season, but I can't find an OMS-safe recipe without added oils. Even the filo dough at the supermarket has oil. What can I do? What's the difference between Dutch-process Cocoa and Cocoa? Are both OMS-safe? Is raw cocoa better than cocoa? How can you make a traditional holiday cake OMS friendly? Close Thanks so much Jack for the inspiration and practical advice you’ve provided on how to make holiday cooking and eating healthy and fun. For those of you listening, you’ve probably built up a festive appetite, but now you can make those delicious recipes a bit healthier, too. This is the final episode of Ask Jack for 2021, but Jack will return to answer more of your food- and cooking-related questions in 2022. So that’s something to build up an appetite for. Remember, you can submit your questions for Jack anytime by emailing . Till then, happy OMS-friendly holiday cooking and eating! Links: Check out this blog post on . Here’s a link to Jack’s blog post about . Want more cooking ideas? Check out the ! Here’s an in-depth article on . Learn about . Learn about . Connect with Jack in a number of ways if you’d like to follow his work or gain some more insight into his OMS-friendly vegan culinary world: | | | In addition, Jack has started a newsletter publication called VeganWeekly that shares three vegan recipes weekly to try at home. Subscribe to it . Coming up on our next episode: Tune in starting November 17, 2021 for a very special episode with new OMS trustees and for a stimulating roundtable discussion about advocacy and its central place in spreading the message about positive lifestyle change to the entire MS community. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E43c Transcript Ask Jack #5 Geoff Allix (2s): Hi, I'm Geoff Allix, host of Living Well with MS, the podcast from Overcoming MS. Jack McNulty (7s): Hi, I'm Jack McNulty. A professional chef and serious OMS foodie. Welcome to Ask Jack, a special Living Well with MS podcast series, where I'll be answering food and cooking-related questions submitted by you, our Overcoming MS community. Geoff Allix (25s): If you'd like to submit a question for a future episode of Ask Jack, please email us at , that's . And now let's rev up our appetites and dig into this episode. Welcome to the season finale of Ask Jack featuring the prodigious culinary talents of professional chef Jack McNulty. Sorry I know Jack just asked me to say, could you say, professional cook? So, I'll change that, professional cook, Jack McNulty, answering food-related questions generated by you, our community. Check out the show notes below that dig into the topics covered in this episode in more detail. Ask Jack will return in 2022 for its second season where we will feast on even more of our community's questions about all things cooking and eating in an OMS-friendly way. Geoff Allix (1m 13s): You can submit your questions for Ask Jack anytime by emailing them to . So, in this episode, we've created a set of commonly asked questions about the holiday season. With the onslaught of the holidays upon us, people following the OMS program face major challenges in making traditional holiday recipes compliant with their dietary choices under the OMS program. Jack has had ample experience in navigating this narrow channel of healthy eating and holiday food fun. And what he's learned and hopes to convey to you is that following OMS dietary guidelines doesn't mean you have to forgo the joy of yummy holiday eating. So, let's dig in and welcome, Jack. Jack McNulty (1m 54s): Thanks, Geoff. Great to be back for another little conversation about food and this time specifically holiday food. Looking forward to it. Geoff Allix (2m 1s): And I think this is, it's a time when food is central, isn't it? There are many different festivities going on at this time of year, but they all do seem to center around food more than maybe at other times of the year. Jack McNulty (2m 17s): That's right. Yeah. There are lots of customs. There are lots of parties, businesses, businesses have office parties, things like this. So yeah, there are lots of opportunities to have food in front of you. But of course, with that, there's also a lot of opportunities to have peer pressure to slip away from the diet a little bit. And I guess that's probably one point we could spend a little bit of time talking about. Geoff Allix (2m 45s): So, to start off with, how do you keep from cheating when you've got everyone eating all this huge array of what does tend to be more non-compliant food? That's the other thing I think because people see it, they have this sort of maybe unhealthy food as kept on a pedestal. Like, okay, I shouldn't be eating this all the time, but it's the holidays. So, I'm going to have this high fat, really lots of maybe more prepared, processed, you know, lots of things. And people think of that because, oh, they shouldn't do it all the time, but it's the holidays, so we'll do it now. Geoff Allix (3m 26s): So how can you keep away from cheating when everyone else is eating all that food? Jack McNulty (3m 33s): Yeah. It's an interesting question, isn't it? It's perplexing to me how people celebrate the holidays by allowing excuses to creep in. And that's really what that is. Yeah. Willpower, it's all about willpower and just being courageous and being strong and sticking to what you believe in. So, for me, when I was just starting out, I mean, I just kept trying to remind myself of what was my goal, what was the whole goal that I was trying to achieve by following the OMS lifestyle and the diet in particular? Jack McNulty (4m 15s): And then I wanted to understand what are the goals of OMS? What are the ultimate goals of OMS? Of course, that's keeping inflammation down and improving your blood profile. And so, I really wanted to always remind myself, you know, are my actions, are my thoughts, the food that I'm taking in, is that in alignment with those goals, my goals, and also the goals within OMS? And I think that's just really helpful to always just keep that in perspective as you move along and through the holidays. It certainly helps when you run across situations where peer pressure comes into play, maybe it's family members or friends, they're saying, oh, come on, it's the holidays. Jack McNulty (4m 59s): You know, a little cheese is not going to hurt you and that sort of thing, but that's the time when it's really most important to really stick to what you're believing in and moving forward with pursuing those particular goals. I also did something that was, I'm not so sure I really want to share this publicly, but now that I've started, I guess I have to. [Geoff chuckles] I, what I did is I kind of gave those little situations that came up, those little stressors, those little pressures that would come up, I gave them names and I just spoke to them. Jack McNulty (5m 39s): So, for instance, this is a bit corny, but I gave cheese the name Charlie, for no particular reason, other than they both begin with C. And so, every time I had an urge at the beginning to, oh, I’d really, really like to have a piece of cheese right now. And then I just talked to Charlie, and I would just say, you know, thanks for coming by Charlie, but we've had this discussion before and I appreciate what you've done for me in the past, but you're not welcome here anymore. So, feel free to leave. And for me, that helped a lot just to kind of play a little bit of a game like that, to give that a particular name and just deal with it that way and acknowledge it. Jack McNulty (6m 19s): And then just move on. There was also on the OMS website, there was a blog post a year or two ago from the former Boston Circle ambassador. I believe her name was Carolyn Kaufman, who wrote a nice piece about this particular topic, about not allowing, or not slipping, you know, a little bit during the holiday season. And that might be worthwhile to go check out. Geoff Allix (6m 50s): And the other thing is, so we'll come onto roasts, which is a big thing, but also sweets and puddings, cakes, do you have any ideas for sweet food that you could make for the holidays, that you could take to a party, that you can enjoy with your family? Jack McNulty (7m 12s): We can probably do a whole hour on this just alone. I think, especially now, there are just so many different ideas available through books, through various community groups, various organizations. It's just so simple to figure out a way to turn something plant-based or to make it a little bit more OMS friendly, you know, depending on whether you're using egg whites or not. So, there are lots and lots of ideas out there. For me, I just like to, I really enjoy this time of year because I like sweets. Jack McNulty (7m 52s): It's no secret. I have a little bit of a sweet tooth, but I love exploring and just keep reinventing. For instance, I took a classic holiday drink, eggnog, are you familiar with eggnog? Geoff Allix (8m 6s): Mhm. Yep. Jack McNulty (8m 6s): And it's so easy to make that plant-based. And so, you know, a veg-nog, if you will, and just cashew-based and create something like that, and then sharing it with other people just really adds a lot of enjoyment to the process. But certainly, to get to the crux of your question, yeah, there are plenty of cakes, cookies, steam puddings, sweet style bread, things like a [inaudible] or something like this. And I think that what you can do very simply is you can go out, search out, for instance, if you're trying to make a cake, just find something that's very ordinary, an olive oil-based cake, for instance, that just pops into my head and then look at that and look to include some Christmas spices to it, for instance, or dried fruits or a combination of those two things, perhaps even adding a little bit of alcohol. Jack McNulty (9m 9s): You know, if you want, if that's something that's favorable to you just increase the sort of festiveness of it around the holiday period, it's very simple to do, to change the flavor profile of something that's just normal and make it a little bit more holiday-like. Geoff Allix (9m 30s): Because of the steam fruit pudding, it's probably quite compliant. I don't think you need to do much to that, do you? Jack McNulty (9m 37s): That's correct, yeah. That's pretty simple. Geoff Allix (9m 38s): And that's kind of the basis in the UK, certainly, at Christmas, we have a Christmas pudding, which is kind of steamed and a Christmas cake. And I don't know about other religions, but I mean, that's sort of a fruit cake, and certainly other cultures because my aunt's from Barbados and her mother who's deceased, she used to cook these incredible cakes. So, she would, every month she would fill a tub with dried fruit. And then she would top it up with rum and then each month she would take one of these tubs down and then make this amazingly moist fruit cake. Geoff Allix (10m 20s): And then she would put another, she would fill that tub, clean it, fill the tub with fruit and put it on the end. She had six tubs. So, it's every six, it took six months to make it across. And then each month it was topped up with more rum. So, by the end of the six months, there was no recognizable fruit. It was just mush, but it was always heavily saturated in rum. The moistness of it was incredible. I think a lot of the alcohol had probably evaporated off, but I think it was probably, I wouldn't like to drive after eating too much of this. And so, it's a very different culture. This wasn't done, particularly as, you know, a religious thing at all. But just, yeah, you can certainly have a fruit cake and a bit of alcohol, if people have alcohol again, sort of adding that sort of Christmas flavors and everything. Jack McNulty (11m 13s): There are two recipes in the OMS cookbook that are very similar to these kinds of things. There's one, that's just, it's simply called a Christmas Cake. I think it has three ingredients. It's along the lines of what you were just describing. Maybe not quite as involved in taking so long, because I think it's a little bit more instant, but it certainly fits the bill. And then there's another one called an Irish Whiskey Cake from Jessica in Ireland. And that was quite fun making that with Ingrid when we were doing the cookbook together, when Ingrid was editing it and we were testing some of those recipes, we had good fun with those particular recipes, actually making them. Jack McNulty (11m 57s): They're quite good. And I encourage people to check them out. Geoff Allix (12m 0s): And you were saying eggnog is another one that there's probably a generic way of saying this, but there's a drink called Bailey's, which is very popular at Christmas in the UK. So, it's a coffee whiskey-based and cream. And that's something I do every year. I kind of have a vague idea of the recipe, but actually, you were saying the experimentation is as much fun as anything. Because I know that there'll be whiskey in there. There will be like oat milk or oat milk whiskey, a little bit of espresso coffee and something like maple syrup or some sort of sugary syrupy flavor in there, and a little bit of vanilla. Geoff Allix (12m 46s): And I just sort of, and actually, it's no problem testing it and then changing it a little bit and testing it some more and then changing it a little bit. The testing is definitely fun. [Both laugh] Jack McNulty (12m 55s): Exactly. Put a little [inaudible] eggnog on there and call it something else, nobody's going to know. [Jack laughs] Geoff Allix (13m 4s): No, it's good. So, coming onto sort of the main course, if you like, there are two questions here, so, well, I'll start with the second one, which is actually the, that this was [inaudible]... This is my first year with MS and I'm new to OMS. And I am struggling to come up with ideas for food I can enjoy during the holidays. And then just to combine that with, do you have any ideas for an OMS-friendly roast? So, what sort of like main event meals do you think you can cook at home, in a friendly way, because it is, as I said again, we're sort of saying unhealthy, but it's also centered around meat as well, but that could be, ham, it could be turkey, but it's beef as well. Geoff Allix (13m 46s): It's often centered around meat. Jack McNulty (13m 48s): Yeah, it is. It's the central item around the table. Before I get to that, let me just address the issue with the first part of that question with someone just starting out the first year with MS. Struggling with different ideas of what to make during the holiday season. Maybe the OMS program is brand new to them, struggling, trying to figure out what kinds of foods to eat. Certainly, for most people that have been following OMS for a while, I think this is very relatable. I think most of us dealt with this at some point or another, probably during the first year in fact, and lifestyle changes are stressful and it does take a lot of courage to go through them. Jack McNulty (14m 34s): You know, by definition, if you're making a lifestyle change, you're really not only changing your habits, but you're creating a little bit of a distance between what your friends and family might be doing as well. And so that's going to add some pressure and some different challenges along the way. So, what I did during the first holiday is I sat down and I just tried to understand what was it about the holiday foods that I experienced and loved so much? What was it, why did I like those? What were those particular recipes that I enjoyed? Jack McNulty (15m 15s): And I, so I collected them, you know, I got in touch with some family members and started collecting a little bit of those particular recipes that meant a lot to me. And I looked out and asked myself, you know, what can I do to make these recipes OMS compliant? And I was really surprised at how simple that was for the majority of recipes. And so for me, it was just a matter of making some slight adjustments. And basically, it was the same sorts of foods. Now, obviously, you're not going to replace the roast at the center of the table. I grew up primarily with, I think we have mostly turkey and ham kind of thing. Jack McNulty (15m 60s): So that was the big thing around my table. But you know, if you are in a family situation, I think that it's simple, if your other family members are eating meat or eating things that you're not necessarily eating to just having a discussion, a family discussion saying, you know, does it really need to be the central part of the table? Can we make that a little bit more off to the side and then change the center of the table, to make it some dramatic sort of vegetable preparation. I think if you search around, it's pretty easy to find a roasted cauliflower recipe with grape and pine nut sauce for instance. Jack McNulty (16m 40s): It's very dramatic looking and it's very tasty and it's very much OMS compliant or some kind of other gratin or something of this nature. Or if you're eating fish, if that's something you decide to do roasting a whole fish can be really dramatic and replacing that with the traditional ham or turkey or things of that nature. I know that in the Southern hemisphere, you know, it's a much different situation. The weather is warm. People are barbecuing. You know, they're out grilling having different kinds of situations. I know, years ago when I was visiting Australia, during the holiday season, I actually had a Christmas day dinner with Linda Bloom, the founder of OMS. Jack McNulty...
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Coffee Break #24 with Lieza Vanden Broeke | S3E43 bonus
11/01/2021
Coffee Break #24 with Lieza Vanden Broeke | S3E43 bonus
Welcome to Living Well with MS Coffee Break #24, where we are pleased to welcome Lieza Vanden Broeke 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 . We hope you enjoy this episode’s conversation with Lieza, coming to you straight from Christchurch, New Zealand. Bio: Lieza grew up in Belgium before moving with her family to Christchurch, New Zealand at age 12. In her teenage years and early 20s, Lieza was a competitive equestrian. Because of her studies, she gave up the sport and took up running to de-stress from academic pressure. In 2015, while studying for her PhD, Lieza was diagnosed with primary progressive MS at age 25. In October 2019, Lieza went to live and work in Hong Kong for a year. Thanks to Facebook and a fellow OMSer, this is when her OMS journey began and when she realized that overcoming MS was a possibility for her. Lieza returned to Christchurch in October 2020 and experienced her first bout of optic neuritis. Since then, Lieza has regained her sight, returned to full time work, seen improvements in her walking, and has even made progress with her running. Lieza is the OMS ambassador for Christchurch, New Zealand. She wants to make others aware that overcoming MS is possible, just like her friend in Hong Kong taught her in helping her begin her own OMS journey. Questions: Can you describe your life before your MS diagnosis? How did you find out that you had MS? What was it like after your diagnosis was confirmed? How did the pandemic affect you? How did you discover Overcoming MS? And so, was it all plain sailing from here? And so, have things continued to decline? As a final question, can you describe how OMS has affected you over all? 3 things you should know about Lieza (in her own words): Laughter is so important in dealing with MS, as is keeping a positive mindset. You are the average of the five people you spend the most time with, so surround yourself with good people. I love travelling (mainly because of the different cultures). Since my diagnosis in 2015, I've travelled to China, attended two weddings in India, travelled through India and Nepal, visited my family in Belgium and Lithuania, attended a conference in Sweden, visited Sydney, and lived and worked in Hong Kong for one year. MS has not stopped me from living my life. If you wait for the right time to do something, you'll be waiting forever. I am passionate about sharing my story with other people to help them live a better life. I am just an ordinary person, and I am overcoming MS. One more thing: I love my cat, Albie. Lieza’s links: Check out Read an in the NZ Herald Coming up on our next episode: Coming in mid-November, the season finale of Ask Jack, our special 5-part series where certified OMS foodie and professional chef answers cooking- and food-related questions from you, our OMS community. Ask Jack will return in 2022 for more bite-sized answers to your food questions. And remember, you can submit your questions for future Ask Jack episodes by emailing them to . Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E43b Transcript Coffee Break #24 with Lieza Vanden Broeke Geoff Allix (1s): 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 guest 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 . 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. Geoff Allix (47s): So, get your favorite drink ready and let's meet our guest. Welcome to Living Well with MS Coffee Break. In this episode of the Coffee Break, we welcome Lieza Vanden Broeke. Lieza is the OMS Ambassador for Christchurch, New Zealand. Lieza grew up in Belgium and lived there for 12 years until her family decided to move to Christchurch, New Zealand. In her teenage years and early twenties, Lieza was a competitive horse rider. Because of her studies she gave up horse riding and took up running as a way to de-stress from university. In 2015, while studying for her PhD, Lieza was diagnosed with Primary Progressive MS at the age of 25. Geoff Allix (1m 28s): In October 2019, Lieza went to work and lived in Hong Kong for one year. Thanks to Facebook and a fellow OMSer this is where her OMS journey began, and when she realized that Overcoming MS was a possibility. Lieza returned to Christchurch, New Zealand and in October 2020, she experienced her first bout of optic neuritis. Since then, Lieza has regained her sight, returned to full time work, and seen improvements in walking, and even made progress with her running. So, to start off with, could you describe your life before your MS diagnosis? Lieza Vanden Broeke (2m 3s): So, in my early twenties, I used to be a runner and I did two half marathons and three full marathons. And when my dad and I used to practice on our trail runs, I'd fall over a tree root, over tree roots sometimes and we'd just laugh about it and say, "Oh, how clumsy". But then during my last half marathon, I noticed some strange symptoms. I had blurry vision while I was running and I couldn't judge distance or depth very well and I slurred my words, and I'm finding it hard to concentrate and my legs and feet feel heavy. Geoff Allix (2m 50s): So how did you find out that you had MS? That was MS [unintelligible]. Lieza Vanden Broeke (2m 57s): Yeah. So, during my last half marathon when I was feeling all these symptoms, I had completed 18 kilometers kind of fine. I was doing it with my sister, and then the last three kilometers-- oh, I'll get to that. So, after 18 kilometers, I could no longer run straight or see properly, and my sister had to hold my hand to help me run in a straight line. And the people on the course ended up stopping me because they noticed something was wrong and they gave me lollies and water and told me to sit down, and they were going to call the ambulance for me, but the ambulance was actually busy somewhere else on the course. Geoff Allix (3m 47s): So how did that-- So from 18k, that's near the finish, isn't it? So, like what's the half? Because to us 13 miles would be a half marathon. So, 21 is a whole distance? So, you're really close to the end then? Lieza Vanden Broeke (4m 1s): Yeah. I was very close to the end. And so, the ambulance was busy somewhere else on the course and because I was so close to the end, I ask them can I just finish by walking and finish their half marathon. And so off I went with my sister, they let me complete or continue. And I walked for a bit then I started running again and the same thing happened. So, we went back to walking and then, because I didn't want to walk through the finish line, I ran the last hundred meters for the finish line, but that was the last time I ran. Geoff Allix (4m 42s): Right. So, with full-on symptoms, but you just, I have to run just to get, just because it looks better. I've only done one marathon, but I had, it was-- and I didn't, well, I may have had some minor MS symptoms at the time, but completely unknown to me. And that was pretty hard to run through the finish line then actually, just to do it. Yeah, that's yeah quite amazing persistence. Just to think I'm going to run it anyway. So, what went on from there? Lieza Vanden Broeke (5m 12s): So that was in June of 2016. And then of course after the way the things that had happened to me, I wanted to-- well I spoke to my GP and she referred me to lots of specialists and I got lots of tests done, but no answers. So, my family finally paid for a private neurology, neurologist appointment. And then when I met with the neurologist and explained my symptoms to him, he mentioned something about Uhthoff's phenomenon, but that was all. Lieza Vanden Broeke (5m 52s): And of course, I asked Google and I found out that people who experienced Uhthoff's phenomenon don't necessarily have MS. So that's what I was hoping for, that I didn't have MS. But so, in November of that year, I was supposed to get my MRI scan. And then, so I got my MRI scan, a few weeks later I saw my neurologist again and he said, I think you have MS. But in New Zealand, I don't have friends like this everywhere. Lieza Vanden Broeke (6m 32s): You need to, they need to confirm your MS diagnosis with a spinal tap. Like the MRI by itself is not enough. Is it the same in the UK? Geoff Allix (6m 44s): That's the same here. It does differ, I think not everyone in the UK has, we call it a lumbar puncture now. I actually prefer spinal tap because it's one of my favorite films. Lieza Vanden Broeke (6m 54s): I didn't even know it was a film. Geoff Allix (6m 58s): Oh, you need to watch it. Separate conversation. Yeah. So yeah, it's normally confirmed. I think that there's some bands that they can spot in the lumbar puncture. But certainly, I mean, I was definitely told that basically you have to confirm MS by ruling out everything else that it could be. So, there's no blood tests for MS. They can't just say, "Oh, yep. Give me some blood test. You have MS." They have to basically go through endless things to rule out. So, there's, we have to have tests on our eye reaction times. So that's something they can use. So, they use like a body of different things to try and say, well, it's clearly not lupus or other things it could potentially be so yeah. Geoff Allix (7m 45s): Similar, but yeah, we call it a lumbar puncture normally. Lieza Vanden Broeke (7m 49s): Yep. So, four days before Christmas, 2016, I got my lumbar puncture and then shortly after I got my diagnosis of Primary Progressive MS. So, a merry Christmas to me. So, I was 25 at the time. Geoff Allix (8m 10s): So, what was it like then after that? I mean, especially coming to Christmas, what was it like after your diagnosis was confirmed? Lieza Vanden Broeke (8m 17s): Well, my symptoms weren't really bad. Like I couldn't run, but I could pretty much do everything else. So, I thought, you know, not the end of the world and I just continued living my life. So, at the time I was diagnosed, I was in my first year of my PhD in Medical Physics. So, it never even crossed my mind to quit and escape going on. And as I mentioned before, you know, I'm very stubborn and I like to live my life on my own terms. So, after my diagnosis, I traveled to many different countries because I love traveling. Lieza Vanden Broeke (8m 59s): So I went to China, I went to two weddings in India. I travelled through India and Nepal. I visited my family in Belgium because that's where I was born. Went to Lithuania. I have some family there. I went to a conference in Sweden, and I finished my PhD. So yeah, I could walk fine, but I couldn't run anymore. And then fast forward a year and a half to 2019, October 2019. And I got to go to Hong Kong for one year, to live and work there. Lieza Vanden Broeke (9m 43s): Kind of the same thing, I was doing my PhD in New Zealand, but just continue it as a post-doc in Hong Kong. And I loved Hong Kong. The temperature and humidity are very different to New Zealand, so I guess my system was in a bit of shock. But when I arrived there, it was autumn. So, it wasn't actually too hot. So, I hadn't experienced their summer. But then January 2020 on Chinese New Year, we found out about the coronavirus outbreak in Wuhan which was the center of the outbreak was 900 kilometers away from Hong Kong. Lieza Vanden Broeke (10m 38s): So, it's kind of scary. Geoff Allix (10m 39s): So how did that, I mean, as much as anything apart from MS, how did the pandemic affect you being in Hong Kong? Lieza Vanden Broeke (10m 50s): Well, I was diagnosed, so I couldn't run anymore but I still loved being active. So, I used to go to a gym to do strength training, but of course COVID shut down all the gyms so I can't go to my gym anymore. And my walking deteriorated really bad, was probably partly due to the stress of COVID as well, not just the lack of gym. So, walking 500 meters from my apartment to the bus stop was a real, real struggle. Lieza Vanden Broeke (11m 32s): Walking downhill was awful. My legs would shake, and they would feel like jelly. Yeah. So, stress and everything made my MS symptoms all of a sudden worse. Geoff Allix (11m 45s): And how did you come across Overcoming MS then from there? Lieza Vanden Broeke (11m 52s): So, at [inaudible], when my symptoms started getting worse in Hong Kong, I was alone. So, I didn't have anyone, I kind of felt hopeless. I was experiencing something that I'd never experienced before. So, I turned to Facebook, MS support groups on Facebook for help and advice. So, I joined quite a few of them, but I found them really depressing. And they were negative, you know, people complaining about their symptoms and saying, "Oh no, my life is awful." So yeah, that made me feel even more hopeless. Lieza Vanden Broeke (12m 35s): And I just thought my life was downhill from there. And then Facebook actually suggested a group called Overcoming MS to me and I joined not fully knowing what it was. I just liked the name. So, Overcoming MS, so I was like, I want to overcome MS. And the first few posts that I read had people being really kind and helpful. So, I was hooked. And then, soon after I actually met up with a member from the Overcoming MS Facebook page, who also lived in Hong Kong, and she explained the seven step Overcoming MS Recovery Program to me. Lieza Vanden Broeke (13m 27s): And she had been following OMS since her diagnosis. And she told me that she'd managed to shrink some of her lesions, and I thought, cool. I want to shrink my lesions so get me into that. So, after meeting her, I followed the diet part of OMS 100% straightaway, a few hours after meeting her. I was taking 50,000 IU of Vitamin D a month. So not enough, but I exposed myself to the sun as much as I could because UV indexing in Hong Kong is quite high. Geoff Allix (14m 12s): Yeah. I mean, that's the thing with not enough from 50,000 IU sounds low. If you're in New Zealand or the UK if you're in Hong Kong, and potentially, you might not need to take any. Cause you could just get, you know, a half an hour of sun in Hong Kong and most days would probably be as much as us taking 10,000 a day? Because I'm currently in cold indoors, getting zero minutes from the sun. So, yeah. So, I think, and that's the thing between people always say how much, it's different for everyone, Isn't it? So--. Lieza Vanden Broeke (14m 47s): Yeah. That's so true. Geoff Allix (14m 47s): You probably just need to get yours checked to what your levels are, but yeah. So sorry. Yeah, go on. And you were saying, what else you were doing? Lieza Vanden Broeke (14m 56s): Yeah, so I also bought some resistance bands, and I did some resistance training in my tiny apartment. I had bought some flaxseed oil, so I was taking two tablespoons of that a day. And my friend that I met on the OMS Facebook page made me go to yoga with her. Yeah. So originally, I wasn't really seeing any changes from OMS, but from everything my friend had told me is that I could expect it to take a really long time, like even years. Lieza Vanden Broeke (15m 37s): So, I just kept going. Geoff Allix (15m 38s): Yeah. They say it's like turning around an oil tanker. You can't, oil tankers don't turn around instantly. This is a very slow process. And that's definitely the way I saw it at first, yeah, I'm not expecting anything. If I exp -- for something you take a tablet and then instantly you'll see a change, but I knew that that wasn't going to happen. I think you have to have faith that that's not something that's going to happen. It's going to be slow, incremental changes. Lieza Vanden Broeke (16m 8s): It's easier to have something fast and instant. Geoff Allix (16m 11s): Yeah, yeah. You take the tablet that stops the headache, and the headache stops. So, from there, was it all plain sailing and improvements onwards? Lieza Vanden Broeke (16m 23s): So, I was still in Hong Kong at this point, but I had declined an offer to extend my contract because my health was more important, I thought. So, I went back to New Zealand and at this stage and in Hong Kong, everything was just a struggle. Every move that I made had to be calculated, like, was it worth it? Am I going to have to pay for it for the next couple of days? I remember even buying like souvenirs for my family. That was, even that was awful. Lieza Vanden Broeke (17m 2s): Like I didn't have to go far, but I just, I couldn't do it. So yeah, I was happy to go back to New Zealand because I'd have my family and my boyfriend. So, in New Zealand, if you, oh, during the coronavirus coming into the country, you can only come in if you're a resident or a citizen and you had to do two weeks over of hotel isolation. So, I thought, oh, that's okay. I'll get two weeks of rest. Lieza Vanden Broeke (17m 42s): And I deepened, you know, organized all my meals to be OMS friendly. I'd ordered some flaxseed oil from the local health food store. So, I thought life was going to be really good. And then I completed one week of my hotel isolation, and now I was waiting in my room and the vision in my left eye started to go blurry. And a few minutes later, I couldn't see anything with my left eye. So, I was experiencing, I didn't know it at that point in time, but my first bout of optic neuritis. Lieza Vanden Broeke (18m 28s): So optic neuritis is often associated with an MS relapse, but I was diagnosed with Primary Progressive MS. So, I'm not meant to have relapses or so I thought. So, I was given a five day course of oral steroids. Geoff Allix (18m 45s): So, you're still in isolation at this point? You're in a hotel room on your own? Okay. Lieza Vanden Broeke (18m 50s): And no one can touch me. So, a neurologist, I had to call one over the phone and she prescribed me the steroids. And I ended up getting some vision back in my eye within a few weeks. So, at this stage I was back at home, I'd finished a mandatory isolation. I was at home with my family, my boyfriend, and my eye recovering more every day. And I thought, yay, I'm through the worst, but yeah MS has other plans, very unpredictable. Lieza Vanden Broeke (19m 31s): So, before the steroids, I could walk, well looked like normal, so downhill, was a struggle, and not for a long time. And after the steroids, I couldn't walk in a straight line, my balance was all over the place. And...
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Let's Talk About Sex (and MS) | S3E43
10/27/2021
Let's Talk About Sex (and MS) | S3E43
Living Well with MS is proud to welcome back , an Ohio-based neurologist specializing in MS, who has featured on episodes that tackled exploring how to and the . Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic, so let’s talk about sex and MS! Dr. Aaron Boster’s Bio: Dr. Aaron Boster is an award-winning, widely published, and board-certified neurologist specializing in multiple sclerosis and related CNS inflammatory disorders. He currently serves as the Director of the Neuroscience Infusion Center at OhioHealth. Witnessing his uncle’s diagnosis with MS when he was 12, he and his family came to see a lack of coherence in the way MS was treated at the time. That experienced informed Dr. Boster’s drive to do things differently. At OhioHealth, he spearheads a revolutionary model in MS treatment and patient care drawing on interdisciplinary resources and putting patients and families first. Dr. Boster is also an Adjunct Assistant Professor of Neurology at Ohio University Heritage College of Osteopathic Medicine, and a former Assistant Professor of Neurology at The Ohio State University, where he also formerly headed the Neuroimmunology division. OMS has recently been pleased to welcome Dr. Boster as one of the newest additions to its Board of Trustees. Dr Boster has been intimately involved in the care of people impacted by multiple sclerosis; he has been a principal investigator in numerous clinical trials, trained multiple MS doctors and nurse practitioners, and been published extensively in medical journals. He lectures to both patients and providers worldwide with a mission to educate, energize and empower people impacted by MS. Dr Boster grew up in Columbus, Ohio and attended undergraduate at Oberlin College. He earned his MD at the University of Cincinnati College of medicine and completed an internship in Internal Medicine and Residency in Neurology at the University of Michigan, followed by a two-year fellowship in Clinical Neuroimmunology at Wayne State University. He lives in Columbus, Ohio with his wife, Krissy, son Maxwell, and daughter Betty Mae. Questions: Aaron Boster, welcome back to Living Well with MS, and thanks for joining us again. Before we dig into this episode’s main topic – sex and MS – there’s a recent bit of news to mention. You’ve joined the Overcoming MS board of trustees. There is no doubt OMS is happy to have someone of your medical and clinical expertise on its board. How has the experience been so far and what compelled you to join in this capacity? Let’s shift gear into our main topic – sex and MS. This is quite important and perhaps not discussed as often as it should be. First off, how would you define sexuality in the context of MS? Is it common for people with MS to experience sexual dysfunction or other challenges with having a normal sexual life? Do the types of sexual dysfunction differ depending on the types of MS you have? If a man is experiencing sexual dysfunction connected to his MS, what are his options for overcoming or managing it? What if you’re a woman experiencing sexual dysfunction connected to your MS. What are your options for managing it? Some people with MS encounter some sort of physical impediments or disabilities. How might that affect your sexual life and what can you do about it? Is there any specific research currently going on that studies MS and its influence on a person’s healthy sexual life? If there was one critical takeaway you could share with anyone in our audience experiencing sexual issues related to their MS, what would it be? Before we wrap up, and on a totally different note, I couldn’t let someone of your expertise leave the guest chair without asking you a question of personal interest to me as well as many other members of our community – about supplements. There are many out there to choose from, from Co-enzyme Q10 and probiotics to things like Ginkgo Biloba, Echinacea, St. John's Wort, Valerian, Ginseng, and many more. Is there a general framework for deciding whether to try a supplement and are there any whose positive effects are supported by an evidence base? Links: Check out Dr. Boster’s popular covering all aspects of MS. Boster is now a . Coming up on our next episode: In just a few days, you can get another dose of our podcast with the premiere of the 24th installment of our Coffee Break series, as we travel (in the eco-friendly virtual sense) to Christchurch, New Zealand to meet another fascinating member of the OMS community, Lieza Vanden Broeke. Lieza has a remarkable personal backstory, and her experience with MS will provide insights and inspiration to our global community. Plus, she’s also the ambassador of the OMS Circle in Christchurch. Thanks to Lieza for her candid interview, and to our listeners for being part of the OMS podcast family! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. S3E43 Transcript Let’s Talk About Sex (and MS) Geoff Allix (Intro) (2s): Welcome to Living Well with MS, the podcast for Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at . If you enjoy the show, please spread the word about us on your social media channels. That's the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (Intro) (44s): Now without further ado, on with the show. Geoff Allix (48s): Living Well with MS is proud to welcome back Dr. Aaron Boster, an Ohio-based award-winning, widely published, and board-certified neurologist, and the founder of the Boster Center for Multiple Sclerosis, who was featured on past episodes that tackled exploring how to make the right medication choices and the impacts of lifestyle choices on MS. Now we tap his expertise to help us grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic. So, Dr. Aaron Boster, welcome back to Living Well with MS. Geoff Allix (1m 28s): And let's talk about sex and MS. Dr. Aaron Boster (1m 30s): Thank you so much for having me. I'm delighted to be back. And you're right, this is an underappreciated topic which needs to be discussed much more frequently. So, I'm glad that we're doing this today. Geoff Allix (1m 41s): Before we dig into the main topic of sex and MS, there's two things I'd like to mention. Firstly, I just want to call out that your YouTube channel, which is very easy to find, if you just search for Aaron Boster on YouTube, you'll find it. In fact, if you search for MS on YouTube, I think it would come pretty high. It is personally, I think the single best resource for a person with MS. Dr. Aaron Boster (2m 7s): Wow. Geoff Allix (2m 8s): Hugely it is... I don't know how many videos you probably are much more aware than me, but I'd say hundreds. There are huge numbers. Dr. Aaron Boster (2m 15s): Yes, 450 some. Geoff Allix (2m 18s): Right. So, whatever topic there is an episode there, and I've found it incredibly useful, incredibly informative. So, I would – Dr. Aaron Boster (2m 25s): So, nice of you to say thank you. Geoff Allix (2m 27s): Well, yeah, I mean, I just think it's, I encourage everyone just going to have a look. It's just, you don't have to look at every topic. Recently, there's one on cannabis and MS. At which in the UK, the police would have different opinions. So, bits aren't going to be, you know, I mean appropriate for everyone. But yeah, there's such a wealth of resources there. So, the second thing, you've joined the Overcoming MS Board of Trustees. Dr. Aaron Boster (2m 56s): Yes. Geoff Allix (2m 56s): Yeah, I think everyone at OMS is happy to have you on board, and your medical and clinical expertise. So, what compelled you to join? And how has it been so far? Dr. Aaron Boster (3m 9s): Thank you. Let me answer those in reverse order. Today, it's been awesome. There's a significant onboarding process, and I've had a great time meeting the other Board of Trustees members, getting to know the Chair, the CEO, and really starting to get to understand the organization. So far, I've participated in one formal board meeting. It's been pretty great so far. I am really excited for what's coming with Overcoming MS over the next couple years. So, the fact that I get to participate is really, really special to me. Now, what compelled me to do it? Really two things if I may. The first thing is, if you look at my style of MS, my brand of delivering MS care, and the tenets that I have developed and talk about and teach. Dr. Aaron Boster (3m 58s): And you look at the tenets of Overcoming MS, they are remarkably convergent, like remarkably so. When I list out being five for five, when I talk about the importance of family, I mean, we just listed six of the seven. I mean, we're very, very converged. That was one thing that as I started to learn more about Overcoming MS, I said, “Wow, these folks are really thinking along the same lines as me.” The second thing is, getting an MS diagnosis is scary. And it's a moment in time when people aren't sure what to do. And in certain locations there's awesome resources to shepherd someone through an early diagnosis. Dr. Aaron Boster (4m 41s): But in many locations, that's probably lacking, and access is a major issue. And so, if you're in a spot where you're recently diagnosed or you don't know what to do, reaching for something that is ready made and awesome is a beautiful thing. And I'll be transparent. In my religion, there are a set criteria of things that you're supposed to do when someone dies. Okay. So, if you don't know what to do when you're grieving the loss of a loved one, there's some set things you're supposed to do: You're supposed to grieve for a certain amount of time. The community helps you in a certain fashion. And really, in the absence of knowing how to cope in grief with a loss, that is an awesome structure to have. Dr. Aaron Boster (5m 24s): And in many ways, I think for someone newly diagnosed with MS, this is a beautiful thing to say, “Sure do this.” So, for both of those reasons, I'm really, really excited to participate. It's been a great experience so far. So more to come. Geoff Allix (5m 39s): And one thing I would say that you have that Overcoming MS doesn't, but should do, I think as an extra pillar would be drink more water. And that's not an Overcoming MS thing. So, we're on a podcast. You can't see me. I'm just picking up my glass this very moment. Dr. Aaron Boster (5m 56s): Sure. And I’ve got water in my mug, yeah, yeah. So, I’m <crosstalk> Geoff Allix (5m 59s): And I think that's, I know we're going off-topic here, but I think that it should be. It's such a simple thing. And because a lot of us have bladder issues and things, and then you sort of say, “Okay, maybe drink less because that's a bladder buster.” I even know it. I know, if I didn't drink enough, then I feel worse. It's one of those instant things. So, some of the things with MS, slow burn as a summary instant. Stress is instant, dehydration is instant. Dr. Aaron Boster (6m 27s): Absolutely spot on. And, you know, I like to challenge people sometimes because I'll say, you know, drink more water, and they'll say something to the effect of, "You sound like my mom." You know, or like, that's silly advice. I'll say, “Okay, but try it.” Geoff Allix (6m 39s): Yeah. Dr. Aaron Boster (6m 39s): Try drinking an adequate amount of water for like three days and see what happens. You know because people are shocked. They're like, “Oh, my gosh, I really do feel better.” Geoff Allix (6m 45s): Yeah. And you've made it really simple as well. So, I just drink a pint or half liter with each meal, and then drink a pint or half liter between each meal. Dr. Aaron Boster (6m 56s): Yeah, then you're done. You just did. Geoff Allix (6m 59s): Yeah. Dr. Aaron Boster (6m 59s): Spot on. Yeah. Then you're good for the day. And unfortunately, so many people, and you give a great example as to why they may shy away from water intake, and inadvertently make their situation so much worse. Geoff Allix (7m 10s): Yeah, so I'd like to. Yeah, so on your next board meeting. So, can we add an extra? Drink more water. Dr. Aaron Boster (7m 19s): Okay. I'll bring it up. As we talk about sex, this, we will come back to this whole bladder thing. It is very, very related. Geoff Allix (7m 27s): I was going to think, yeah. I was thinking you can't say, drink water during sex, that wouldn't work. But anyway. So, let's get on to our main topic, sex and MS. So, it's a very important one. I mean, it's obviously very important for the survival of the species as much as anything, but it's an important topic. And probably not discussed often enough, often embarrassing. So, how would you define sexuality in the context of MS? Dr. Aaron Boster (8m 2s): So, you know, sexuality arguably would be defined as humans’ ability to experience sexual feelings. It's a really broad blanket term for a lot of things related to sex. So, my first comment is I don't think of sexuality in someone impacted by MS any different than I do in any other human. And I think that's actually a very, very important distinction because there's nothing unique about the sexuality of human being if they happen to have a chronic illness or not. Now, playing out sexual behaviors, intimacy, all these wonderful things, MS can risk interfering. Dr. Aaron Boster (8m 46s): And that's where we get into a really important discussion. And that's where sometimes we really need to try to help educate and intervene. Geoff Allix (9m 1s): So, is sexual dysfunction more common for people with MS? Does it increase the chances? Dr. Aaron Boster (9m 7s): It certainly is. Now, you know, MS is a situation where the immune system can affect any part of the supercomputer that runs your body - the brain, and the superhighway - the spinal cord. And unfortunately, there's plenty of specific areas in the brain and spinal cord where if there's damage, it could interfere with sexual functioning. And so, the spinal cord is a really good example. Very commonly, when someone has a transverse myelitis, inflammation in their spinal cord, then they may find that their limbs are numb or kind of weak. But they also will very likely notice problems with the down theres – bowel, bladder, and sexual function. And this is, unfortunately, all too common in the setting of MS. Dr. Aaron Boster (9m 48s): I would also say that it's oftentimes overlooked by the MS clinic, something that's kind of glossed over and not discussed. And given that it's somewhat of a taboo topic in casual conversation, I think patients are sometimes a little bit nervous to bring it up. Geoff Allix (10m 8s): And does the type of MS you have whether it's relapsing or progressive, does that affect the types of sexual dysfunction you might have? Dr. Aaron Boster (10m 16s): I would say no. I would rather think about the kinds of sexual dysfunction a little bit differently. Not so much related to the phenotype of MS. So, someone with relapsing MS, or Primary Progressive MS, Secondary Progressive MS, what have you, I don't see different kinds of sexual problems. I would run about it as follows: primary sexual dysfunction, secondary sexual dysfunction, and tertiary sexual dysfunction. So, just to share a couple quick definitions that helped me when I'm thinking about this. Primary sexual dysfunction is a problem with the circuitry and hormones of sex. So, when the down theres are stimulated, there's a lot of circuitry that goes on to assist in intercourse. Dr. Aaron Boster (10m 58s): That message in the down there has to go all the way up to the brain, through the spinal cord, where the brain interprets the activities and says, “Ah, okay.” And then it sends messages from the brain back down to the down theres to do certain things. We're talking about arousal, orgasm… excuse me, arousal, either erection or lubrication depending on the gender, and then eventually orgasm. And so primary sexual dysfunction can result from MS damage in the brain and spinal cord. And what can happen is you can end up with problems in the circuitry. And so, you can have difficulties with any of those things - arousal, erection, maintaining an erection, ejaculating or arousal, lubrication orgasm. Dr. Aaron Boster (11m 43s): The other piece to this when I think about primary sexual dysfunction is imbalances in hormones. And I have, for several years now started to routinely screen gentlemen, for example, looking at testosterone levels. Not just to help with sexual function, but there's also ramifications through other aspects of MS, believe it or not. So that's kind of primary sexual dysfunction. And we'll talk maybe a little bit later about how we overcome those things. Secondary sexual dysfunction is important and very often overlooked. And it's a situation where there's problems with sex, not because of the circuitry of sex, not because of hormones, but because of MS symptoms that make things not sexy. Dr. Aaron Boster (12m 24s): For example, if you're having intercourse, and you lose your bladder, it may stop the activity. I mean, you know, that's like scary to a lot of people. They would think, “Oh my goodness, gracious.” And if you're having intercourse and your leg goes into an extensor spasm, it's extremely painful, you're not having sex anymore. Yet even things like motor fatigue can make it so that, you know the activity of intercourse can become challenging, and these are all secondary sexual dysfunction issues. This is where, to be honest, we can really gain a lot of ground. Now, tertiary sexual dysfunction, I would define as not so much the circuitry of sex or symptoms that interfere with sex, but it's more of a psychological phenomenon where the human being doesn't feel sexual. Dr. Aaron Boster (13m 11s): They don't feel like a sexual being. They feel maybe like an <unintelligible> they feel ill. They don't feel that they can be sexy. And so, when I think about sexual dysfunction, I find it most helpful to kind of try to bucket things into those categories. And oftentimes, we're dealing with all three. Geoff Allix (13m 35s): And so, if we break it down into men and women, what options would a man have if he's experiencing sexual dysfunction connected with MS? Or how could that be managed or helped? Dr. Aaron Boster (13m 50s): Absolutely. And so, if we first think about arousal, and this is actually true for both men and women. I'll make sure to give...
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Coffee Break #23 with Katy Glenie | S3E42 bonus
10/04/2021
Coffee Break #23 with Katy Glenie | S3E42 bonus
Welcome to Living Well with MS Coffee Break #23, where we are pleased to welcome Katy Glenie 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 . We hope you enjoy this episode’s conversation with Katy, coming to you straight from Taupō, New Zealand. Bio: Katy is an outdoor loving adventurer who lives on the shores of Lake Taupō in New Zealand. She is mom to 4-year-old Rosie, wife to Mike and runs a communications consultancy that supports businesses who are making a positive impact in the community and on the environment. Katy is currently training to climb a 3,000-meter peak in the Southern Alps of New Zealand. It will be the first mountain she has climbed since her MS diagnosis in 2019. She keeps her mind and body strong through a daily program of exercise, meditation and OMS-friendly diet. She wants to use her journey to show others that having MS doesn't mean the end of adventure. In Katy’s own words: "The training might look a little different, the journey might be a little slower, and the goal might change, but the joy of a life filled with adventure is still out there waiting for you." Questions: Katy, 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 live in what sounds like an idyllic place. Can you tell us about Lake Taupō in New Zealand? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? You live in a remote place. What are some of the challenges of having MS and living in a beautiful yet distant paradise? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them? When did you first start to see any kind of positive indicators in following OMS guidelines? What were these? One of your core philosophies is that nature if the best medicine. Seems that’s led you to take up mountain climbing. Can you share the backstory about how you got into climbing, and how your balance your own health needs with what seems like a rigorous physical activity? And how, if at all, has OMS helped with this? You’re training to climb a 3,000-meter mountain in NZ’s southern alps. Wow! Tell us more. Shifting gears slightly, one of your other passions is caring for the environment and reducing consumption. How do you put that into practice in your daily life and can you share some perspectives or ideas that may enlighten our listeners? If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Katy’s Mountain Climbing Adventures: Katy completed her first alpine climb since her MS diagnosis in August 2021, climbing Single Cone in the Remarkables, near Queenstown, NZ. This was part of her training program for the big 3,000m climb, which is due to happen in November 2021. According to Katy: “The climb was incredible, and although I was a bit slower than before my diagnosis, and was very tired afterwards, my body was able to keep going. Hooray!” Katy’s Links: Check out Learn more about from Katy’s climbing website Katy’s Glossary of Māori Phrases I'd love to share some of our local Māori phrases that are commonly used here in Aotearoa (New Zealand in Māori). Our indigenous language is unique to our country and is seen locally as a treasure (or taonga) and an important connection to our land and people: Kia ora = hello Mōrena = good morning Ka kite anō = see you again / later Ngā mihi = greetings (commonly used as a sign-off on emails / letters) Kaitiakitanga = guardianship / care and protection of our land and native species A macron over a vowel indicates a longer vowel sound, and Māori vowel sounds are: a (‘a’ as in ‘car’) e (‘e’ as in ‘egg’) i (‘i’ like the ‘ee’ in ‘tee’) (‘o’ as in ‘four’) u (‘u’ like an ‘o’ in ‘to’) Coming up on our next episode: Starting October 20, Living Well with MS welcomes back , an Ohio-based neurologist specializing in MS. This time we tap his expertise to grapple with an important topic that isn’t discussed as often as it should be – sex. Sex and sexuality are vital dimensions of a healthy life, but how are they impacted by MS? Our discussion with Dr. Boster digs into the science and practical implications behind this topic, so let’s talk about sex and MS! Also, the final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to . Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E42b Transcript Coffee Break #23 with Katy Glenie Geoff Allix (1s): 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 or our global Overcoming MS community. Our guest 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 . If you enjoy the show, please spread the word about us on your social media channels. Geoff Allix (45s): 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. Welcome to Living Well with MS Coffee Break #23, where we are pleased to welcome Katy Glenie as our guest. As always, your comments and suggestions are welcome by emailing . We hope you enjoy this episode’s conversation with Katy coming to you straight from Taupo, New Zealand. So, Katie, 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 better get to know some of the diverse members of our community from around the world. And today you're in the hot seat. Geoff Allix (1m 26s): You live in what sounds like an idyllic place. So, could you tell us a little bit about Lake Taupo in New Zealand? Katy Glenie (1m 34s): [unintelligible], Geoff. Thank you for having me on the program. It’s lovely to chat with you. Yes, I live in the most beautiful place in the world, Taupo out there in New Zealand. So, we're on the edge of New Zealand's biggest lake and in the distance, some beautiful mountains on the edge of the lake. And that's one of the reasons that we moved to Taupo three years ago actually was to start doing a bit more mountain climbing, rock climbing, and I also love to swim and it's a freshwater lake and one of the cleanest lakes in New Zealand. So, it's beautiful swimming as well in the summertime. So, we were very lucky to live here. Geoff Allix (2m 16s): And when were you diagnosed with MS. And could you provide a bit of a backstory of that? Katy Glenie (2m 23s): Yeah, sure. So, I was diagnosed with MS around two and a half years ago. It was actually soon after we moved to Taupo, came as quite a shock as it will do for most people diagnosed. I have no family history of MS. We came to Taupo and we're really excited to start enjoying this wonderful outdoor lifestyle. We have a young daughter, so she would have been two at the time. And I had a, what I now know is a relapse. So progressively more and more pins and needles, numbness, loss of sensation on my right side. Katy Glenie (3m 3s): And eventually that turned into what I now know as the classic MS hug, so I was really struggling to breath doing anything more than very basic sort of day-to-day things. It took a really long time for me to get diagnosed through our public health system. So it was, it came eventually as a bit of a relief to have a name against what was happening to me, but it was also a huge shock. I imagined that I, within weeks might be in a wheelchair, which I now know is not the case, but I guess that's where my brain went and I thought, wow, how am I going to be a parent? How am I going to be a wife and a contributing part of a relationship? Katy Glenie (3m 50s): And how am I going to be able to engage in this beautiful outdoor lifestyle that we had come to Taupo to experience? So, it was a rough time. Geoff Allix (4m 1s): So, you've, you said you live in a beautiful but remote place. So, what are some of the challenges of having MS and living somewhere that's quite distant and remote? Katy Glenie (4m 13s): Yeah, thanks for asking that question, it is really challenging. And I hadn't realized that until I started to try and engage with the health system from a regional community. So, there's a lot of driving to appointments quite far away because our local hospital is really just very basic. The neurologist I see is just a visiting neurologist, he comes to the hospital at a town that's over an hour's drive from where we live and all of the services like MRIs and specialized testing and my infusions that I get are all done in another town. Katy Glenie (5m 1s): So, there's a lot of driving and there's a lot of sort of, I guess, stress around trying to find out if you're getting the right treatment, because there's no MS specialists anywhere near where I live or the specialists that we have around the main centers. So that's, I guess another complication. Geoff Allix (5m 19s): But you managed it well, do you get over those problems? Katy Glenie (5m 25s): Yeah. Yeah. I mean, everything's surmountable in the end, but it's just, you just kind of have to navigate your way through and try and find support where you can get it. So, for example, I found an excellent neurophysio who's based in Auckland and I've seen her through online sessions. And initially I thought, how do you see a physio online? Like, don't they have to see you doing exercises. But actually, most of the time we just talking about where I'm at, where I could go to next, what some of the challenges I'm facing might be. Katy Glenie (6m 6s): And then I just fly up and see her every sort of three or four months in person. And that actually worked really well. So, you sort of be a bit creative in that way. And the other thing that's, to be honest has been absolutely excellent are Overcoming MS tools and support that’s available online, because that has been a huge source of inspiration and support for me on this journey. Geoff Allix (6m 32s): That's good. And one thing actually has been a good side of COVID is that actually the online ability to do things has gotten much better. I'm the same my-- I just spoke to my neurophysio last week, but although I can normally see her, that's very restricted because of coronavirus. But actually they, everyone has made real efforts to be able to do things virtually and you're right. Actually, I didn't need to physically see her. And it was easier just to do this, do it over Zoom, and we could have a conversation and actually get some things resolved and it was a good meeting. And I think things hopefully will stay like that because we've got this ability to communicate that's been improved because we had to. Katy Glenie (7m 19s): Yeah, yeah. I did notice that the, you know, like the webinars series that are in this, going through the different parts of the protocol and some sort of ideas and inspiration, you know, I feel like that might not have happened unless COVID sort of, or maybe sped things up a little bit and it, you know, I would have gone on a retreat if I could have, but that was all kind of closed down and with all the institutes not operating, so that option isn't there for me and being able to see all that stuff and engage with the little message boards and that, that's been really cool. Geoff Allix (7m 60s): And when did you come across OMS and why did you start, when do you decide to start to follow it? Katy Glenie (8m 8s): So, Dr. Google found me OMS, Dr. Google is an amazing resource. And I mean, I sort of had a look about, but it wasn't long until I found that. And then I know you've mentioned before on previous podcasts that you, you know, you like the idea that it's not selling you on a thing. And that appealed to me as well about really the research and that's quite genuine. So yeah, I came across it really quickly. And then I soon, you know, I started to see that people were having good results and I know, you know, the results on an individual level will be hugely variable depending on your situation and those sorts of things, but just having inspiration there, listening to people that I'm going to doing really well and that I encouraged them moving forward. Katy Glenie (9m 1s): That's been, yeah, it's been really good. Geoff Allix (9m 4s): And what are some of the challenges you've faced in implementing the OMS protocols? Katy Glenie (9m 12s): So first thinking about this before this conversation started, you know the hardest thing was I was not even vegetarian. I was a full meat eater; I had a lots of meat at every meal pretty much. And we, you know, I think we eat veggies here maybe once every three months and we had lots of cheese. So, it's kind of like, how do you cook without meat and cheese, is that even a thing? So that's been a real learning curve for us. We're kind of on a good record now, but that took a long time. Katy Glenie (9m 52s): And my husband was a very much a meat eater and he was like, well, when do I get to eat the steak? And I'm like, just put it on top. I just won't have those fats. Geoff Allix (10m 2s): I came from a very similar-- I say, in some many ways actually with your hobbies as well. So, I was into rock climbing and outdoor sports and might have by the case of surfing and very, very, very active, but my diet was terrible. It was very processed as well, as well as being mostly meat. There's a lot of pies. Yeah. There was a lot of fried food, a lot of cheese. And you wonder whether that contributed, I don't know, but I thought I was okay because I was so active. I was slim. And I thought, well, if I'm slim, then eating all that food is not doing me any harm, I'm burning it off. Geoff Allix (10m 43s): And you don't realize that there are other side effects to what you eat and, you know, heavily processed food is never going to be good. And yeah. Food with high fat. Katy Glenie (10m 54s): You know, [inaudible]. We're quite lucky in New Zealand, I mean, you know, everyone's a bit different, but our diet generally isn't that processed, but definitely a lot of meat. And, you know, fat, you know, I used to say to friends, fat’s back, don't worry fat’s back. You can eat as much as you like it's safe and you know, it keeps you [inaudible] So definitely, it was a big challenge. And the other thing that was initially a bit of a challenge, but it's now something I've come to love was the meditation. I mean, I own my own business. I have a young daughter and I'm very active in the community, and then the outdoors. Katy Glenie (11m 39s): And I was like, when do you fit this in? This is ridiculous. They're asking you to meditate every day, who does that? And then actually my physio said to me, as part of fatigue management, she said, you need to do something that rests your brain every day and you need to do it not right at the end of the day, when you're trying to go to sleep, you need to do it at a time when you really going to benefit from having your brain rested, which is the middle of the day. She said, you need to sit down, and you need to stop everything that's going on. All the stimulation, no reading, no listening to what's going on in the news. You need to just quiet your brain down. Katy Glenie (12m 20s): And I was like, jeepers even the physio is telling me to do this, all right, I'll give it a go. And so, you know, put your Air Pods on and listen to this woman telling me to chill out. And after a while, I was like, this is amazing. This is, it's been a really, really beneficial change to my life adding meditation to the bag, and now I do it religiously every day. Geoff Allix (12m 43s): That was like my physio as well. And she said, my first neurophysio said, don't forget your mind, which I found really strange because I thought they would be, it's all about exercise and they would ignore all the other elements. And that would be their thing. But yeah, he said, no, you must think about your mind as well. And he was sort of talking about, you know, think about yoga and think about different things, but basically try and not get stressed out, calm your mind. And it was really interesting to get that from someone who's actually from a different field saying that they see benefits from people who practice mindfulness, stress relief, yoga, those sort of things. Geoff Allix (13m 25s): So, when did you start to see positive benefits from following OMS and what were these? Katy Glenie (13m 32s): Well, it's taken longer than I had thought, but it's been a slow progression of less symptoms. So, my symptoms have been mainly pins and needles and sort of lack of sensation. And then also I would get, I get problems around fatigue and heat tolerance. So, when I get too hot, I get really, really tired and all my symptoms, my pins and needles go a bit crazy. So, what I've noticed at the start, I didn't really notice anything, but over time I noticed that all the symptoms were getting less and less. Katy Glenie (14m 21s): So, I was still getting them, but I was getting them less frequently and they were lasting for a much shorter amount of time. But the thing that it really gave me, so that's obviously a benefit, but the thing that it really gave me was a sense of hope and a sense of focus. So, I knew I just needed to keep following the steps and keep working through it and it gave me some autonomy over my own health. I wasn't sitting and waiting to see if there was a new medication that was going to save me. I wasn't, you know, waiting to see if some amazing new neurologist was going to come into our town. I felt that I had that autonomy over my own health, and that has been probably the biggest benefit to the program. Katy Glenie (15m 4s): So, I have definitely seen improvements in my symptoms, but in terms of my outlook and my approach to life, that's where I've really benefited. And I feel that I've got much more confidence to continue to live a full life. Geoff Allix (15m 20s): And...
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Pregnancy and MS: A Firsthand Account | S3E42
09/29/2021
Pregnancy and MS: A Firsthand Account | S3E42
Getting pregnant is a topic that often spawns many questions, but this is especially so when you have MS and must balance health and lifestyle considerations against the desire to have a healthy pregnancy and starting a family. is an area that Overcoming MS covers extensively, but to really delve into this important discussion we at Living Well with MS thought there’s nothing better than getting a firsthand account. That’s where Ingrid Adelsberger comes in. Ingrid has followed the OMS program for several years. She is the editor of the OMS cookbook, the former ambassador of the OMS Circle in Los Angeles, and the current co-ambassador of the global OMS Circle. Ingrid is also a proud mom to a two-year-old daughter named Romy. Questions: Welcome to Living Well with MS, Ingrid. We’re here to discuss your experiences with pregnancy, but first off, can you tell our audience a little bit about yourself? When were you first diagnosed with MS and how long was it till you came across the OMS program? How has the experience of following the OMS program been for you? Can you share some of your ups and downs, and any lessons you’ve learned? On to the topic of pregnancy. I understand you welcomed Romy, your lovely daughter, into your life over 2 years ago. But when you first started thinking about getting pregnant and starting a family, what were your initial concerns as it pertains to having a healthy pregnancy while having MS? How much of a consideration was your MS in your decision to try to get pregnant? Did you take any specific precautions or measures to ensure your pregnancy would be smooth without flaring up any MS symptoms? Was it hard to maintain the OMS program while being pregnant or immediately thereafter? Are there any tips you can share with our audience about doing so? What was the experience of being pregnant like, in the sense of how it impacted, if it did at all, your MS? Did you consult any specialists before or during pregnancy to enlist their aid? And if so, did it help? Did you have any expectations about how the pregnancy would go, and was the reality what you expected or different? Is there anything you would have done differently in hindsight? Did the pregnancy or the time immediately thereafter see any kind of impact on your MS symptoms or general state of physical or mental health? Having a newborn makes a dramatic impact on your life under any circumstances. How did you stay centered and keep your stress levels as low as possible while facing the challenges of being a new mom? Thanks so much for being on our program, Ingrid, and enlightening many mothers to be with your experiences with pregnancy and MS. As a final thought, if you could offer some key suggestions or advice for women with MS who are considering getting pregnant, based on your own personal experiences and what worked really well for you, what would these be? Bio: Ingrid was born in Vienna, Austria and moved to New York in 2005 where she lived until 2016. She then moved with her husband Dat to Los Angeles where her daughter Romy was born in 2018. Her first career in New York was event planning, but her experiences with MS and especially OMS, focused on the power of lifestyle change, made her want to change careers. She started a course in health coaching in 2016 which led her wanting to learn more, so she completed a master’s degree in health coaching in 2019. Ingrid wanted to apply her newly acquired skills as a health coach, which she did by working independently as well as for a health services company. She currently resides in Vienna with her husband and daughter. Ingrid is also the editor of the OMS cookbook and served as the ambassador of the OMS Circle in Los Angeles before moving back to Austria. She is currently the joint ambassador (with Sean Kressinger) of the global OMS Circle. Links: Ingrid used as a tracking tool throughout her pregnancy, and still uses it today. Ingrid gained much insight about pregnancy from a classic resource, What to Expect When Expecting. Now there’s a , too! Ingrid practiced hypnobirthing, which you can learn more about from this . Coming up on our next episode: Buckle up and jet (the virtual kind, with zero carbon footprint) to New Zealand to meet OMSer and mountain climber extraordinaire on Coffee Break #24, premiering on October 4. You’ll want to hear all about her OMS journey, as well as her latest adventures scaling a 3,000m peak in New Zealand. Also, the final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to . Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E42 Transcript Pregnancy and MS: A Firsthand Account Geoff Allix (1s): Welcome to Living Well with MS, the podcast from Overcoming MS for people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at . If you enjoy the show, please spread the word about us on your social media channels. That's kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (44s): Now without further ado, on with the show. Welcome to Living Well with MS. Today, we're talking about pregnancy and MS, with Ingrid Adelsberger. Getting pregnant is a topic that often spawns many questions, but this is especially so when you have MS and must balance health and lifestyle considerations against the desire to have a healthy pregnancy and start a family. Pregnancy and MS is an area that Overcoming MS covers extensively, but to really delve into this important discussion we at Living Well with MS thought there's nothing better than getting a firsthand account. That's where Ingrid Adelsberger comes in. So, Ingrid, welcome to Living Well with MS. We're here to discuss your experiences with pregnancy. Geoff Allix (1m 27s): But initially, could you tell us a little bit about yourself? Ingrid Adelsberger (1m 30s): Yes. Thank you so much for having me. I am originally from Vienna, Austria, and then I moved to New York in 2005. I've lived there for a little over 10 years and then moved with my family, with my husband because his family is in Southern California, so we moved in 2016 to LA. And I worked in New York as an event planner for 10 years. And then throughout my MS experience and OMS, I wanted to change careers and I studied another time and started health coaching. And this is kind of the career that I have been doing starting late 2016, and then obviously most importantly on today's topic in 2018, my wonderful daughter, Romy was born and she's almost three years old now, which I cannot believe. Ingrid Adelsberger (2m 22s): And we currently are in Vienna for the past [inaudible]. Geoff Allix (2m 25s): And when were you first diagnosed with MS? Ingrid Adelsberger (2m 28s): I was diagnosed in 2011. March 2011. Geoff Allix (2m 33s): And when did you come across the OMS program? Ingrid Adelsberger (2m 36s): So, I pretty quickly found Swank and I remember that day very well and checked the internet out right away, because I read no chocolate and I was like, that's not for me. And then, but it somewhat worked in my, in the background of my mind, and so I started an elimination diet just a couple of months later, until the two months I really cut out wheat and dairy and everything, meat and all kinds of stuff. And then I found Swank again. And then the second time I was looking at it, I was like, you know, maybe that is the way to go. So, I started Swank then and on the Swank forum within a month, I'd found OMS and that changed my life because so many people were saying, you know, honestly it's very positive, it's stricter, but it has better chances and stuff like this. Ingrid Adelsberger (3m 26s): So, I decided to move over to OMS, and I did that in September or October of 2011. So, I didn't get started right away, but I would say with everything before I almost started a couple of months later. Geoff Allix (3m 42s): And how have you found the OMS program. What have been the good things and the bad things about OMS? Ingrid Adelsberger (3m 50s): Yeah, so I would say, like many people in the beginning, I struggled with the diet, and I was super strict for a year. And then I had "relapsed" and, you know, I bounced back, and I ate, you know, many non-OMS compliant things for a little while, until I realized that I'm not the only one. And that happened during my OMS retreat in England, in 2013. And that's also when the idea for the cookbook was born, but-- and then obviously it got easier because knowing that others have a similar experience and working on the cookbook made it much, much easier. Ingrid Adelsberger (4m 38s): But in the beginning, I struggled very much with the diet. I never struggled with the workout, I believe. Like working out because I started already working out in my mid-twenties before that, not so much, but then, you know, I just did, I continued to do that. And I had different phases throughout OMS where I did yoga or where I was running, or I did a lot of gym exercises and it definitely got difficult throughout the pandemic. And so now I'm doing a lot from home, either like it's a seven-minute HIT workout or it's yoga. Ingrid Adelsberger (5m 20s): And I do a lot of walking. I've always done a lot of walking because that's the thing that I really love. Geoff Allix (5m 27s): And you touched on it there, but you're the editor of the OMS cookbook. So how did you find that editing a book and dealing with all the recipes? Ingrid Adelsberger (5m 38s): The first thing I, if I knew what I'm getting myself into, I would have never done it. But the experience was really amazing because I met so many people and lots, you know, including you, emailing with people about the recipes, so many other things. And there were some really long exchanges with different people from all over the world. That was really, really nice. And I would also say that was, hopefully not the peak, but it was around five years after I started OMS which is the time that they say this is when the diet really comes to full. Ingrid Adelsberger (6m 23s): How do you say the full fruition? Geoff Allix (6m 25s): And you must've like, because you tried all the recipes, didn't you? So, you must have, like from around the world, must be really interesting to try. Ingrid Adelsberger (6m 34s): It was great. And it also minimized eating out, right? Because there's nothing that I craved, you know, I mean, I made more cakes every week then I should have eaten and all other things. So, I think I was super clean OMS and very tasty and lots of fun, lots of work too, but it was great. It definitely was great. That is actually my up-- I meant to say that, that is my up. When we talk about ups and downs, that was definitely one of my greatest OMS ups that I can say. Geoff Allix (7m 9s): And so, we're talking about pregnancy and MS on this podcast. So, on topic of pregnancy, you mentioned that you welcomed, is it Romy, your daughter? When you first started thinking about having a family? What were your concerns about being pregnant while having MS? Ingrid Adelsberger (7m 33s): I must say ignorance is bliss. So even though I knew that there could be some negative flare ups or negative implications, is that the right word to say? But I really didn't think too much before getting pregnant at all, things like this. When we started to talk about having a family, I was 35 and I had Romy when I was 37. So, at this point I was more concerned about being an old mom. And it wasn't necessarily about what implications would the MS and the pregnancy have, because I always understood that pregnancy was really good. Ingrid Adelsberger (8m 24s): It's more the postpartum that I was worried about, and I was worried about her developing MS. So, I was definitely thinking a lot about that. And we started already during the pregnancy I remember reading a lot on the OMS website and asking people and you know, what can I do that she will not get OMS. I'm sorry, that she will not get MS. So, I try, you know, the first year super strict having her on OMS, which I don't know if that's completely the right thing, because you know, when they're so little, they need more. So now that she's three, we are doing that, she's not a hundred percent OMS, but I do try to offer her much vegetables. Ingrid Adelsberger (9m 15s): You know, I have all these great thoughts of like, you know, I'm a health coach and my daughter is going to eat all the vegetables and not cheese. But I do my best to offer and over and over again and making sure that she eats as healthy as possible. And everybody that I talk to says, like, you know, I bet she's doing really well better than others. Geoff Allix (9m 36s): I mean, I think with my kids, I try to rank how bad things are in that, that we shouldn't eat in a diet. And so, my kids are dairy free, they don't have any red meat, they have some chicken. So, they have basically my diet plus chicken. They do have some vitamin D supplementation. They're very sporty and active anyway. So, they're -- the way I see it is I think, well, that's got to be much, much better than a typical diet and certainly a diet I had growing up and they're aware as well, and they wouldn't dream of smoking or, you know, they know that because my father had MS. Geoff Allix (10m 21s): So, they know their grandfather had MS. Their father has MS. So, to them, there's an obvious pattern. Like, okay, if I don't do things right, I'm the next generation. Ingrid Adelsberger (10m 33s): But you can wait till they're older so they can-- Geoff Allix (10m 37s): Yeah. I think there's a risk if you go too strict that they could rebel as well. Ingrid Adelsberger (10m 41s): Exactly. So that's what I'm trying to do, right now, and she's allowed, she doesn't drink milk, so she drinks soy milk, but she does get, you know, a croissant or something like that, now and then, because she loves it, and you can’t cut everything it's not like that. We have sweets at home and we really, I'm trying to give her as little chocolate and sugar as possible. So, for example, I have this, actually, I bought that for myself, these bars that are made out of dates and cocoa powder, and she loves those too. So, I think it's like when you offer her stuff like that, then she doesn't know the difference from this to a Twix bar. Ingrid Adelsberger (11m 27s): So, I think before I was pregnant, I always say, at home we eat what mama eats and when you're out, you can also have other stuff. So that's kind of how we've been doing it. And she eats almost no meat because we don't eat meat at home, now and then she eats chicken. There were really some rare occasions that she would eat some other meat, but she's not used to it. So, she doesn't really like that. Geoff Allix (11m 53s): And during pregnancy, are there any special precautions that you took during pregnancy? Ingrid Adelsberger (12m 1s): I tried pretty much only OMS and try to stay as true to OMS as I can, especially when we talk about diet. Diet, so definitely that it was sometimes difficult because obviously people tell you, you know, you need dairy, you need meat, you need eggs, all those kinds of things. And so, there were many times that I was like, what if I'm doing the wrong thing for my child? And then I would go back to OMS, ask somebody, and would come back and say that was okay. But she was a small baby when she was born, and she was pretty light. So, I blamed myself for a long time that it's my fault because I'm fairly tall and so is my husband. And so, she was not a big baby when she was born. Ingrid Adelsberger (12m 42s): So, I was really scared that it's my fault, but it means they're starting to prove that it's all turning out how it should be turning out, and that's good. So, there was also a nurse that I had during, from my insurance during pregnancy that I said, like, you should be eating fish oil and stuff like that. And then again, went back to OMS, is a bit of flax oil not enough, and got back into like, continue what you're doing, you're fine. So, I kept on doing all these things, but I did worry about it. So, if you are doing OMS and you are pregnant or want to get pregnant, just trust, trust and believe that OMS is the right thing. Geoff Allix (13m 25s): Yeah. I think there's a lot of-- in the health system that they, there's a lot of belief in the way they've always done things. And in the UK certainly we have dairy as a food group, as a required food group. But then when you think about it, the dairy one, when it was explained to me, and I've said this many times, but it's just not normal to have breast milk from another species. No animal on earth does that apart from you. I can't believe that's normal. Ingrid Adelsberger (14m 2s): Yeah. That is actually the one thing that just came up with a conversation with a friend that I'm realizing, Romy has been a hundred percent breastfed. She has never had one single formula. And that was one of my wishes and goals that she would not have dairy when, like very early on. As I said, now, obviously she has a little bit of a croissant or something here and there, but she has not had dairy. And I probably breastfed her over two years. So, she has not had any of that early on. Geoff Allix (14m 39s): And that's shown to be good anyway, isn't it? Just generally for the general population? Ingrid Adelsberger (14m 44s): Luckily, I think they say six months, but then the World Health Organization says even two years. So, I think the longer you do it, the better it is. I believed that that was one of the things I can do to start her off the best way in this life. I hope it's true. Geoff Allix (15m 8s): So how did you find it having MS and being pregnant? Did it, did having MS affect your pregnancy or being pregnant and affect your MS during and after pregnancy? Ingrid Adelsberger (15m 21s): So, during pregnancy, I would say, no, at the very end, I had some days where I had a little bit of symptoms, but it wouldn't be like days and days, all day long. It would bend like once or twice, and I could feel something and then it was, that was it, that was the only thing. I must say I had, I think, a dreamy pregnancy. I really, I worked out until month seven. And the last couple of months I did maybe yoga and walking. I did hypnobirthing. Ingrid Adelsberger (16m 2s): I prepared myself with hypnobirthing for the actual birth. So, then I did those type of meditations, during that time. I slept so much, I wish I could sleep like this again. I just really, really, especially being "an old mom", I had a fantastic pregnancy. It was really a good time. Unfortunately, afterwards, maybe not so I think very much what the book says, six months after pregnancy is when I had, looking back now, maybe a relapse or definitely flare up of old symptoms and stronger. Ingrid...
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Coffee Break #22 with Jen DeTracey | S3E41 bonus
09/20/2021
Coffee Break #22 with Jen DeTracey | S3E41 bonus
Welcome to Living Well with MS Coffee Break #22, where we are pleased to welcome Jen DeTracey 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 . This episode is a little departure from our normal guest format, but we hope you enjoy the conversation with Jen, coming to you straight from Montreal, Canada. Bio: Jen DeTracey was diagnosed with MS in 2010. Within six months, she thought she’d never work again. At the time of diagnosis, she was at the peak of her career as a marketing consultant. After navigating rough waters for several years, Jen explored how to begin thriving while living with MS and fatigue. Fast forward to 2019, Jen became a certified life coach. As a result of this training, she uncovered how to dramatically improve the quality of her life, recognizing that mindset is paramount to wellness and well-being. Jen launched the Women Thriving with MS channel and group. In 2021, she launched the membership to support women who want to connect with others and discover how to thrive with MS. We are better together. Questions: Jen, 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 the OMS and larger MS community from around the world, and today you’re in the hot seat. Can you tell our audience a little bit about yourself, what you do, where you’re from, etc.? When were you diagnosed with MS and how did you initially deal with it? Did you find the healthcare infrastructure in Canada, where you live, supportive and useful in getting and managing your diagnosis? When you were diagnosed, I believe you were full steam ahead with your marketing career. What kind of lifestyle changes did you have to make to deal with the new MS reality, and how did that affect your work? Sounds like you dealt with some difficult emotional and physical barriers after your diagnosis. Can you give us a little insight into what you experienced and what helped you manage some of these challenges? Can you tell us about Lift Strategies, the book you wrote? What’s it about and why did you decide to write it? You also ultimately founded Women Thriving with MS. Our listeners can get a whole host of links in our show notes, but perhaps you can tell us what Women Thriving with MS’s mission is, and the impact you hope to make on the MS community through this effort? If there is one thing you can do to make a positive impact on the MS community – let’s call it your legacy – what would that be? So, what’s next for Jen DeTracey? Finally, if you tap into your experience with MS for a nugget of wisdom that would help people ease into and better adopt the necessary changes they need to make to their mindsets and lifestyles to live a healthier physical and emotional life with MS, what would that advice be? Katy’s Links: Check out , a four-part coaching series for women living with MS Check out Jen’s coaching website, Check out Women Thriving with MS on Check out Women Thriving with MS on Check out Women Thriving with MS on Check out Jen’s book on marketing on Coming up on our next episode: Thinking of getting pregnant or already are? Join us on September 29 for the next episode of Living Well with MS, featuring OMSer Ingrid Adelsberger’s firsthand account of pregnancy while having MS. You won’t want to miss hearing her story and her insights on this important life experience. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E41b Transcript Coffee Break #22: Jen DeTracey Geoff Allix (1s): 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 guest 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 . 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. Geoff Allix (46s): So, get your favorite drink ready and let's meet our guest. On this episode of the Living Well with MS Coffee Break, I'm joined by Jen DeTracey. Jen's bounced back from her MS diagnosis to author a book on marketing called Lift Strategies and launched a health coaching business called Women Thriving with MS. So, Jen, welcome to Living Well with MS Coffee Break. We're so pleased to have you on our program and the purpose of the Coffee Break series is to get to know some of the MS community from around the world. And so today is your turn and could you tell us all a bit about you, where you're from, what you do and so on. Jen DeTracey (1m 26s): Yeah. Hi, Geoff. It's great to be here. And I'm from-- I've been living in Canada for most of my life. Right now, I'm in Montreal and I came from a family of four kids. I'm the only one with red hair and I was the runt of all the tall people. And what's interesting is my father was in the Canadian Armed Forces. So, we moved around a lot, around Canada. We were down in the US in Alabama, which was shocking to me as a Canadian, for a year, as well as in the UK when I was six. So, I had many different schools and was constantly adapting to change. And at 21, I fell in love, but it was with marketing. I attended a business college. Jen DeTracey (2m 9s): Yeah, I was my love at the time. And when I graduated, I actually started to do college radio, which was really exciting. I sort of dove into music in a very deep way. And my dream was to work for a record label. We had a small one in Canada, an independent, still exists called Network Records. I don't know. Have you heard of an artist called Sarah McLaughlin? Geoff Allix (2m 32s): I'm aware of the name but I can't think of anything she's done. Jen DeTracey (2m 36s): Yeah. Well, you know, she's kind of been there, done that now, but back in the day because, I'm 55 right now, back in the day when I hopped into the music business at 26 and was doing that, I was doing marketing for her and that was a blast. In fact, I was in the music business for 10 years until things moved more to digital and dotcoms were dying. And I started my own business and that was a marketing strategy business. So, and I've been doing that online actually. I switched to moving to only meeting with clients online about six years ago, long before COVID hit, as a way to manage my energy. Jen DeTracey (3m 21s): And so, I'm doing that presently and I basically aim to work about 20 hours a week and I also started, but I know we'll get into this later. I started the Women Thriving with MS Community. So, we can chat about that in a bit. Geoff Allix (3m 38s): Absolutely. And then when were you diagnosed with MS? Jen DeTracey (3m 42s): Yeah, it was back in 2010, so almost 11 years ago now. And ironically, it was like at the busiest time of my life, darn it. I was on a three-day speaking tour and right before I left, I noticed I was hugely fatigued and I was just like, okay, I'm just tired because I'm working a lot, like 10-hour, 12-hour days. And, you know, my left hand was acting a little funny and I was kind of like, what's going on with that? So, when I did the tour, it was very compressed and crazy. And I got up on the second morning of that tour and I just was-- I was like, I'm so tired. Jen DeTracey (4m 23s): I've got to get out and run because I need to get some energy. And I was running, my left foot started to drop. And I actually, I thought it was hilarious. I'm like, this doesn't hurt. So, what's going on here? But I felt I did have to hide that while I was up speaking with people. Like I had to put a table in front of me, so they couldn't see my leg on day three, which was kind of hanging a little bit. So, when I got back to-- this trip was in Northern Canada. And so, when I came back home where I was living in Vancouver at the time, the next day I went to my naturopath and I went to my physiotherapist to try and get me in shape. Jen DeTracey (5m 7s): And they said, "You know, if there's any problems, just come back on Monday. We think there's something in your C3, C4 area of your neck. So, we'll check that out, you know." Again, in the meanwhile, I had plans on that Saturday. So that was on Friday. On Saturday I had plans to go see a play and I met up with a friend and she said, "What's going on with your leg?" And I said, oh, don't worry about that. Like, let's just go in and watch the play. And she's like, "Well, you know, I think you need to go to Emergency." So, I said, well, let's watch the play first. So we went into the play, had dinner because, you know, you can't go to Emergency before having something to eat because you never know how many hours you're going be in there for. You can't go on an empty stomach. Jen DeTracey (5m 47s): Yeah. So that's what we did. And so, I was fast-tracked and that night at the hospital, they had done all, everything. And then they've moved me into a holding tank area and they said-- I said, "Excuse me, can I go home now? You've done all these tests." They're like, "No, we're going to page a neurologist to come in in the morning." And I'm like okay. Like I was clueless. What does that mean, you know? Geoff Allix (6m 12s): And when you think it might be bad because I've been through the whole chiropractor, osteoporosis type thing that it could be a trapped nerve. And equally, I had a dropped left foot early on, which I discovered from running because I used to do a lot of running and you, yeah, you're expecting it to be a trapped nerve because-- And a lot of sort of chiropractors or osteoporosis people are sort of saying, "Oh yes, we think it's trapped nerve here that's causing this." And so, yeah, to then be told that you're going to see a neurologist, you know, why we would have to see a neurologist? So, I can imagine. But how was the health care system in Canada for treating MS? Geoff Allix (6m 53s): Is it pretty good? Jen DeTracey (6m 54s): Yeah. What's interesting is it is pretty good in some ways. If I can just, I want to backtrack for a sec to-- So what happened there in that situation was that I was diagnosed within 48 hours with MS. And then they put me on the steroids, gave me the lumbar puncture and everything. And what I found was that I was so pumped up on those steroids that I couldn't sleep, and I felt crazy and that's kind of how I left the hospital, you know, in that state of shock. So, when we look at the healthcare system, I can say that, yes, like I was able to access a neuro and this neurologist, she was great. Jen DeTracey (7m 38s): I was so lucky to get her, you know, in the lottery of neurologists. When I left the hospital though, they don't prepare you for anything. You know, I'm pumped up on steroids. I'm in shock. They don't talk to you about diet or next steps. They just say, "You know, here's a piece of paper with some information on the MS Society. And you're going to see a neurologist in three months and just carry on with your normal life." Geoff Allix (8m 4s): So to speak the medical part was okay, but the support side of it was maybe a bit more lacking? Jen DeTracey (8m 12s): Yeah. There's nothing in place and you know, I think that this is 11 years ago. And I think now with hospitals in Canada and, you know, they're being sort of a stretch of, you know, not as many resources available because the demand for serving people is so high that I don't know if that will ever happen. And that's something that I would like to see change in that industry. It's amazing how you could, if you could just sit down with somebody and say, "Okay, yeah, like this is shocking for you to go through this and here are the next steps that will be happening for you," I think just a great entry point into starting that new journey. Geoff Allix (8m 53s): Yeah. I mean, I don't, I've spoken to people from lots of countries now, and I can't think of anywhere that they've said actually that there was someone who gave that sort of support. I mean, there was an element I had of that sort of support, but it was from a neurologist who really had been through the process many times before, but he wasn't trained to give the emotional support side of things. So, yeah. And I'm not aware of any country where they do, to be honest, certainly no one's told me about it, but you're right-- Jen DeTracey (9m 24s): I think in the US, yeah. Geoff Allix (9m 26s): I was just going to say, yeah, you're right. It would be hugely beneficial. Jen DeTracey (9m 32s): When I have-- I've had a conversation more recently with a woman who's an MS nurse in the US. She's actually retiring, but there's a whole body of MS Nurses internationally. Most of them are in the US and Canada. And I think that they are more astute to important information beyond the medical side of things for MS. But in Canada, we don't really have that structure in place. And I'm curious in the UK, if you have something like that. Geoff Allix (10m 4s): We call it a postcode lottery here. So, it is dependent on where you live really. So, some, I mean, we have a great health care system with the NHS. It's free of <inaudible> views and that's, you know, very effective. And I think a lot of people, myself included might have private healthcare, but that actually find that the national NHS system has been the main thing that they're using, but it does depend on where you are. You certainly get different treatment. And if you're in different parts of the UK, so Scotland has different medications allowed as opposed to Wales, which has different medications allowed compared to England. Geoff Allix (10m 45s): So, it does very much depend on where you are. So, after diagnosis, what's next? So, what changes did you make? How do you deal with the reality of having MS? Jen DeTracey (11m 2s): Yeah, you know, at that point, because I was at the peak of my career, I really didn't have-- I had enough time to take a break when I came home from the hospital for maybe two to three weeks. And that's because my daughter who lives in Spain, I had a plan to go visit her, but I knew I couldn't. It just wasn't really, I didn't have the capacity, the energy, and after, you know, being on these steroids. So, I basically used that time to recover, but I had six months of training contracts where I would go and do full-day trainings and also regular clients. And so, I had to figure out how can I make that work. Jen DeTracey (11m 43s): Because one day, a full training was very difficult. So, I just tried to space them out in a way where I didn't do two days in a row anywhere. And the challenge for me was because I had put so much time and energy into my business in the last three years, leading up to this situation of being diagnosed, that it was completely my identity. So, it was very hard for me. And I took naps every day, but I was reluctant at that point. I've surrendered to that now. Naps are like awesome. But back then, I was just like, why do I have to take these naps? So, you know, by the time I finished those contracts and was just pushing through in my MS denying state of mind, I just hit a wall and, you know, I could barely get out of bed. Jen DeTracey (12m 31s): And, you know, I think the biggest fear was losing my mobility. So that's kind of where I landed. And then I had to, you know, really had to look at things and figure out how to do my life differently because denying MS was not working for me. And living in that vacuum around living with MS and fear was just, you know, it was kind of basically purgatory, right? Geoff Allix (12m 54s): So, what did help with managing the challenges of having MS? Jen DeTracey (12m 60s): I think for me, I was really lucky because my neurologist, first of all, told me when I met with her at three months, she said, you know, often people will grieve their diagnosis for up to three years that she has seen that. And it was really helpful that gave me permission to be able to grieve. It gave me permission to acknowledge that being diagnosed with MS can be traumatic. And so, I just had to make some changes in my life. And also, people were making changes on my behalf. I don't know if you've heard the stat that 75 percent of people that get diagnosed with MS lose family members or friends, because those people can't handle it. Jen DeTracey (13m 42s): And that happened to me. I had some, a friend that I was hanging out with that I lost. She just couldn't handle it. I quit running, which I had been doing training for a 10K because I couldn't. So, I had to look at like what could I do? Who was I as a person if I wasn't going to be able to work anymore? That was a possibility. And if I was not going to be able to run anymore, which was my way to destress, you know, how was I going to change that? I know. Did you go through some bumpy times yourself, Geoff? Geoff Allix (14m 14s): Yeah, certainly. I went from being very active, so running the marathon. Not long before diagnosis, I used to surf, rock climb, mountain bike, snowboard, and a lot of those things. I'm not entirely ruling them out. I mean, I've been snowboarding since diagnosis, but that's come become harder recently, but, yeah, it's difficult. When that's kind of your, that, as you said, that my life outside work was sport. And a lot of that's become harder. So, yeah, you do have to work out, but you have to work out. Geoff Allix (14m 56s): What can you do now? Rather than think about the things that I can't do, I'm thinking about the things I can do and trying to expand the things I can do. Jen DeTracey (15m 5s): Absolutely. I think that's, you know, in that soul-searching that I had, where I was deep-diving and asking myself who am I now? Like, who's Jen DeTracey now? And at that point, I decided, you know, one of the things was I needed to feel positive and hopeful. And so, I just kind of had my connection with God in the way that it was. I wasn't really a church-going person, but just that and getting into spirituality. And I had already been doing meditation, but I knew that I needed to get back into that. And I started to get back into my stretching and meditation routine because that was something I was doing before diagnosis to have that in my toolkit. And also I realized that I needed some therapy and the therapist that I picked to help me deal with my anger and upset around the MS just happened to be Buddhist. Jen DeTracey (15m 56s): And she really taught me about how to embrace feelings. So instead of being angry and pushing MS away, which wasn't really...
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Ask Jack #4 | S3E41 bonus
09/15/2021
Ask Jack #4 | S3E41 bonus
Welcome to our third installment of Ask Jack, featuring the prodigious culinary talents of professional holistic chef answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station for this season’s final episode, Ask Jack #5, premiering on November 10, 2021, just in time for the holidays. Beat the rush and submit your questions for the next Ask Jack early by emailing them to . Introduction In this episode, we have received a smorgasbord of questions from all over the world on all sorts of saucy, nutty, oily yet all delicious topics. So, let’s see what food- and cooking-related questions are coursing through the culinary minds of the OMS community. Questions 1 + 2 Our first question is about vegan cheese. Rebecca from Scotland is wondering about tips for making a fermented cashew cheese. She’s thinking about using probiotics or cider vinegar. Her main concern is how to know if it's gone bad to ensure eating it doesn’t make her ill. Pro tip from Jack: for those who are interested in pursuing the art of making vegan cheese at home, Jack recommends Artisan Vegan Cheese, by Miyoko Schinner (available through all major book outlets). For a more in-depth dive into the world of Vegan Cheese, visit Berlin-based - they offer online information and instruction, as well as supplies to those based in Europe. Rebecca also wanted some tips on eating out and how to make decisions about what to compromise on? What if she’s really stuck while out somewhere and one option contains coconut oil and another contains palm oil and another is fried in a small amount of vegetable oil, how is she supposed to decide on the lesser of all evils in a pinch? Questions 3 + 4 Emma in the UK had a couple of questions for our resident foodie: firstly, what is your best recommendation for a halloumi replacement? Secondly, what’s your best recommendation for OMS-friendly takeaway food (that’s takeout for our listeners in the US)? Question 5 Let’s talk veggie fritters. Kay in New Zealand used to love vegetable fritters of many different sorts. Some just with the vegetables, some with flour, maybe herbs or spices, etc. They were one of her favorite lunches. She’s tried to make them by baking them in the oven but finds they come out dry and a bit leathery compared to frying in oil, meaning they lack that lovely crispiness. Is there a solution or something she could do to improve the crisp factor in her fritters in an OMS-friendly way? Pro tip from Jack: have a look at Jack’s recipe for making OMS-friendly . Question 6 Here’s a saucy question from Nicola in Canterbury. She was wondering whether you have any good ideas for a bechamel type sauce. She’s experimented with various recipes to use in a lasagna but hasn’t found anything yet that tastes great. What’s your secret bechamel replacement? Pro tip from Jack: there are several recipes that will make you forget what dairy-based bechamel sauce ever tasted like, include Jack’s , Jack’s , and Jack’s . Try one or try them all and let us know what you think! Question 7 Belkis from Istanbul just got a machine called a Thermomix and there are a lot of recipes which makes cooking much easier. Plus, there are lots of recipes in their database. Many of these have you add extra virgin olive oil while cooking with other liquid and the machine shows the temperature and often it is not above 120 C. So, if you’re cooking with some other liquid like vegetable stock or water or chopped tomatoes, plus you add olive oil, is it OK to cook under 180 C, just like with the baking and oven rules? Is what they recommend OMS-compliant? Question 8 Fran from New Zealand is going to open a can of legumes for us. She doesn’t tolerate this food group well, though many OMS recipes call for lentils and such. So, what’s your suggestion for getting around legumes but still retaining the substance they bring to cooking? Question 9 + 10 + 11 We’re going to end on an oily note with some questions from Tania in Australia that relate directly or indirectly to oils: firstly, is it OK to “sweat” onions and garlic with oil free vegetable stock instead of water? And other than olive oil, what’s the next best oil to have in one’s pantry? Lastly, from Fran is a question about air fryers, which we delved into on a previous episode. She’d like to know if using one if healthy on an OMS diet. She’s concerned they may release some sort of emissions. Close Thanks so much for another fantastic and informative round of food Q&A. For those of you listening, you’ve probably built up an appetite. Join us again starting November 10th for the holiday edition of Ask Jack, so submit your questions early to . Till then, happy OMS-friendly cooking and eating! Links: Connect with Jack in a number of ways if you’d like to follow his work or gain some more insight into his OMS-friendly vegan culinary world: | | | In addition, Jack has started a newsletter publication called VeganWeekly that shares three vegan recipes weekly to try at home. Subscribe to it . Coming up on our next episode: Join us on September 20 for the 22nd installment of our Coffee Break series, where we “travel” to Montreal, Canada to meet Jen DeTracey: marketing expert, author, certified life coach, and founder of . We hope you’ll be inspired by her story! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E41b Transcript Ask Jack #4 Geoff Allix (2s): Hi, I'm Geoff Allix, host of Living Well with MS, the podcast for Overcoming MS. Jack McNulty (7s): Hi, I'm Jack McNulty. I’m a professional chef, and serious OMS foodie. Welcome to Ask Jack, a special Living Well with MS podcast series where I'll be answering food and cooking related questions submitted by you, our Overcoming MS community. Geoff Allix (25s): If you'd like to submit a question for a future episode of Ask Jack, please email us at . That's . And now, let's rev up our appetites and dig into this episode. So welcome back to Ask Jack, where we ask professional chef Jack McNulty food related questions for people following an Overcoming MS Diet. So, welcome back, Jack. Jack McNulty (52s): Thanks, Geoff. It's great to be here for another episode. I looked over some of the questions earlier and I must say there's some excellent questions to dive into this episode. Geoff Allix (1m 3s): So, yeah, this episode we've not got a specific topic but we're going with general questions that have come up in the forums and that have been asked of us by listeners. So, if we jump straight in, we've got a question from Rebecca in Scotland. She said I've been wondering about making a fermented cashew cheese and any tips -- that I had to be honest, I've actually followed Jack's tips to make a fermented cashew cheese. So, it was pretty good, but I'm quite interested whether I was doing it right or not. Everyone survived. So that was the main thing. So, she said, “I have probiotics or could buy cider vinegar, or my flat mate makes Kombucha, which I could use.” Geoff Allix (1m 51s): My main concern is to know if it's gone bad or could make me ill. I'd also love test tips on eating out, and how to make decisions on what to compromise. I know obviously in an ideal world, I would never compromise but if I'm stuck out somewhere and one option contains coconut, and another option contains palm oil, and another is fried. It has a small amount of vegetable oil. How am I supposed to make the wisest choice? At the moment I don't take any dairy ever and will never take anything deep fried. But with oils versus say a skinless chicken fillet which is the least bad option for a once in six months compromise. So, let's start off with the fermented cashew cheese. Geoff Allix (2m 31s): How would you go? Jack McNulty (2m 32s): Yeah. Geoff Allix (2m 32s): I mean cheese is one of the big things. I think with dairy there's alternatives for milk, there's alternatives for yogurt, but cheese is a tricky one. Because the cheese in the supermarkets tend to be very high saturated fat. Jack McNulty (2m 47s): Um-hmm. Geoff Allix (2m 47s): Coconut oil-based cheeses. So, there are also cashew cheeses. So how would we go about making a cashew cheese? Jack McNulty (2m 57s): Yeah. First of all, Rebecca outstanding questions you kind of get in at the heart of a lot of concerns that probably a lot of newcomers are going to have. So, why don't we dive into that. With respect to the cheese question. Yeah, so many people are really interested in plant-based cheeses and what to do about that. So many people are trying to experiment at home and making plant-based cheese mostly from cashews. Let's take a look first at what's going on there. In order to make sort of a cheese out of cashew nuts, there's a couple of things that need to happen. Jack McNulty (3m 44s): And the first thing that needs to occur is bacteria or an enzyme for both from a living culture needs to be introduced in order to coagulate the proteins in the cashews, and also to ferment the mixture and convert the starches to a lactic acid. This is going to release these flavors, this acidic component but also start to create cheese-like flavors. It's very mild, so it's nothing like a normal cheese that you would be maybe familiar in eating but it goes a little bit in that direction. Jack McNulty (4m 28s): So, in order to make a cashew cheese: the first thing you need to do is you need to grind the cashew nuts very, very fine. And then I found that it's best heating the cashew puree or ground cashew mass straightaway as it sort of helps with the proteins to coagulate once you introduce the bacteria, which is the next step. And that needs to be a live culture. So, something along the lines of perhaps a soya yogurt, or a water kefir, probiotic capsules. Jack McNulty (5m 12s): I think Rebecca mentioned that. Or something else called Rejuvelac, which is something I experimented with. Now, Rejuvelac is another process and something you can make easily at home and it's basically fermented whole grains that you just basically are soaking in water, leaving at room temperature for a couple of days. And the grains began to ferment and take on sort of a cheesy aroma. It's quite an interesting process and it works really well in terms of creating these live cultures and enzymes to help with the cashew cheese. So that helps the process. Jack McNulty (5m 54s): That gets the process started. And it creates a sort of lactic acid and the cheesy flavor with the cashew nuts. But what really is necessary is to add further enzyme at this point. Something like from Koji, or vegetarian rennet, or nigari, which is often used to set tofu, soya milk converted into tofu. And this is going to bind the proteins together. And this is what's going to create a more firm, or semi firm cashew cheese. If you leave that process out, your cashew nut that's been fermented is going to be more creamy. Jack McNulty (6m 37s): It's going to be more of a thick dip if you will rather than a cheese. So just to clarify that a little bit. So, that's the process. We'll put in the show notes a link to what I do, and also some other places on the internet, if anybody's interested in going out and experimenting with making their own. Which gets to the second part of the question, how do you know if you're doing it safely or if it's gone off? Or if you're going to make yourself sick? Geoff Allix (7m 12s): Before you go on to that, I mean I think, because I have experimented a bit. Jack McNulty (7m 16s): Yeah. Geoff Allix (7m 16s): And I think you can because you're mentioning that sort of yeasty flavor. Jack McNulty (7m 22s): Yeah. Geoff Allix (7m 23s): And you can, I've tried with different things. I think kombucha was mentioned. I haven't tried kombucha. But certainly, I was making sauerkraut and using liquid from sauerkraut because it's a fermented liquid. That worked actually because it had those natural bacteria in it. So, I guess I get -- Jack McNulty (7m 45s): And alpha has a lot of lactic acid which is very helpful in the process. Geoff Allix (7m 49s): Okay, so it could work. Jack McNulty (7m 50s): Yeah. Geoff Allix (7m 50s): I just saw that somewhere and you could try that. And the other thing to the thickening, I think, agar-agar, which is a sort of seaweed-based sort of gelatin type. I mean, the risk is it goes a bit rubbery if you overdo it, but then a small amount could bind it quite well. And so, there's different things you can do. There you can experiment. And try with like herbs and spices as well that's I think, you know, to give it the flavor. Now adding chives, adding something to make it more spicy, I think there's all sorts you can do. It's one of those things, if you like cooking, try stuff out. Jack McNulty (8m 28s): Yeah, exactly. The world is relatively open when it gets to that. And when you put a foot into the fermentation door, then you're really getting somewhere, because there's all kinds of possibilities out there for creating interesting flavors and tastes, and things that are really healthy. But you do have to be careful because you're playing around with things that can go bad if you're not careful. So, if you are getting into this world, it's very important to invest in a good thermometer because temperatures are very important. Jack McNulty (9m 10s): It's also very important to work extremely clean, which means understanding how to sanitize properly all of the equipment that you're using just to reduce the probability of something going off. Fortunately, when you're making cashew cheese, if it goes off it's going to let you know. So, there's a couple of molds that might appear on the surface of a cashew cheese. The general bluish-greenish mold, those are fairly harmless. Obviously, because you see blue cheese and that's basically just a mold anyway. Jack McNulty (9m 55s): So, if that develops on the surface, you can just wipe that away and carry on. The more dangerous, and more common with cashew cheese, you get the mold is reddish in color. And that is going to be harmful. And so, if something like that develops, you're going to want to just throw away whatever you have. But mostly what's going to occur is the smell is going to go off. And it will be fairly offensive at least it is to me. And that's usually a pretty good sign that I don't want to put something in my mouth. The other little taste test you can do is something just starting to go off. You can put a little on the tip of your tongue and if there's an immediate tingling that's going on, on the tip of your tongue, you know that the process has already started that it's going off. Jack McNulty (10m 43s): So that's usually when I'll just get rid of something. I like to err on the side of caution when it comes to that sort of thing. Geoff Allix (10m 53s): Okay, it's good advice. So, the second part of the question was about missing out and compromise. I mean I, prior to COVID, used to travel quite a lot. Jack McNulty (11m 3s): Yeah. Geoff Allix (11m 4s): So, different parts of the world are easier than others. Some like the US, have lots of people that have dietary requirements. France very, very hard. And then others in between. So, Thailand, I found was one mentioned of coconut here, which was certainly a compromise that I made there because lots of things contained coconut. But what is the compromise you'd make? If you've got possibly coconut, you've got maybe some palm oil, or you've got some vegetable oils, which are -- is there a less bad option? Jack McNulty (11m 51s): I love the way that question is phrased as less bad off. First of all, I think it's harder to make good decisions today than say, a dozen years ago. Primarily because there are just so many other options that are out there. There's so much stuff on the internet that is promising this or that. And people move around quite a bit more. And they get right to this situation that you were describing just now, Geoff, when you're out traveling. But in my mind, I think it's -- well, I don't like using terms like compromise, or allowances, or treats because I think this plays tricks on the mind. Jack McNulty (12m 34s): And it's best to stay away from letting those terms sort of infiltrate the mind. They lure you into thinking what you miss in your diet instead of promoting what is possible. It's kind of like, it's a what you cannot versus what you can do, kind of mentality. I found that the trick really is to minimize the impact and try to use different strategies. So, if you're out just going to a restaurant, maybe calling ahead, researching the restaurant beforehand is always helpful. Maybe even eating before you even go out so that you can stick to lighter options on the menu, and you have a lot more control on that aspect. Jack McNulty (13m 22s): I think anytime that you go out to eat, you have to recognize that you're already going to make sacrifices because you're leaving yourself open to whatever is in the restaurant. And most restaurants are not going to be living on the safe side, when it comes to what we expect. They're going to be using ingredients that are not necessarily the best ingredients. For us, they're going to use cooking techniques, not necessarily the best for people following an OMS diet. And so, you're already going to be a little bit behind on that. In terms of going out, yeah, when you're traveling, I think it's really, really important to just understand before you leave and take off what you're getting yourself into and understand that, well, I'm not going to stress if I have -- if I'm in Thailand, and I want to eat because I have to eat. Jack McNulty (14m 22s): And if I have to eat there might be a little bit of coconut milk, but this is a week-long adventure, and I'm just not going to stress about it. When I get home, I'm going to live in the good health lane for a good long time and make sure I get plenty antioxidants and all those sorts of things. I know when I travel, and I follow a pretty strict 100% plant-based diet. When I travel, I do make allowances and say okay, it's just easier for me. If I'm in an ocean environment that I'm going to order a little bit of fish here and there. And I just don't stress about it. I take care of myself when I get home. Jack McNulty (15m 4s): So, I think it's understood, especially when you're starting off on the OMS diet that you're going to make mistakes along the way. There will be situations that come up that are out of your control, and just accept them as part of, “Well, hey, that's just life.” And it's, you know, as long as you don't make a habit out of it or don't say, “Well, this is a treat or a compromise because that allows you to do that again at some other point.” Just let it -- I just said, “If I find that I've made a mistake somewhere along the line, or mistakenly eaten something that I'm not supposed to eat, or not wanting to eat, I just let it fall off my shoulder and just move on.” Jack McNulty (15m 54s): I usually have a good laugh about it...
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A Window into MS Research from Johns Hopkins | S3E41
09/08/2021
A Window into MS Research from Johns Hopkins | S3E41
Dive into the what’s happening at the forefront of MS research with the guidance of , Associate Director of the Neurology Residency Program and Assistant Professor of Neurology at the world-renowned Johns Hopkins School of Medicine. Questions: Why did you decide to choose neurology and specifically neuroimmunology as an area of medical practice? Why the focus on MS? Were there any personal experiences that shaped this path? You have your own lab at Johns Hopkins; can you tell us a little bit about the research you conduct? Are there any specific epiphanies you’ve had as an MS researcher that made you step back and say ‘wow’? Anything that’s surprised you? What in your view is the connection between diet and inflammation in people with MS and other autoimmune conditions? Are there specific dietary recommendations you offer to your patients connected to your research? What is the clinical evidence to support your perspectives on the connection between diet and MS? Switching gears for a moment, how disease pathology differs between relapsing-remitting and progressive disease? How does this difference explain the failure of current therapies in progressive MS? What do you see as the most promising areas in MS research today? There has been some discussion about the symptoms of extended duration, or long, Covid-19 are similar to those of MS, namely fatigue, brain fog, headaches, etc. This makes me wonder if the treatments for Covid could be repurposed for MS, and vice-versa. Any thoughts on this? 5 years from now, what’s your forecast for the state of MS research and advances? What are the greatest obstacles to our making progress in understanding MS, and how can we overcome them? Bio: Dr. Kornberg completed his undergraduate studies at Yale University. He then received M.D. and Ph.D. degrees from the Johns Hopkins School of Medicine and stayed at Johns Hopkins for neurology residency and a clinical and research fellowship in neuroimmunology. He is committed to a career that combines the competent and compassionate care of patients with multiple sclerosis and other immunologic disorders of the nervous system with basic and translational research aimed at developing improved therapies. Dr. Kornberg is also a Program Director of eMultipleSclerosis Review, which is a continuing medical education program accredited by Johns Hopkins. It includes a podcast featuring discussions about clinical topics and patient scenarios with doctors and nurses treating people with MS, in order to educate health care providers on best care for people living with MS. Links: Kornberg’s Kornberg’s Kornberg’s Kornberg’s Coming up on our next episode: Jack is back! Starting September 15, catch the fourth installment of Ask Jack, our special 5-part series where certified OMS foodie and professional chef answers cooking- and food-related questions from you, our OMS community. The final installment of Ask Jack for 2021 premieres on November 10, and it’s our special holiday cooking edition. Remember, you can submit your questions early for the next and all future Ask Jack episodes by emailing them to . Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E41 Transcript A Window into MS Research from Johns Hopkins Geoff Allix (2s): Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to 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. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (44s): Now without further ado, on with the show. Joining me on this episode of the Living Well with MS Podcast is Dr. Michael Kornberg. Dr. Kornberg completed his undergraduate studies at Yale University. He then received MD and Ph.D. degrees from the Johns Hopkins School of Medicine and stayed at Johns Hopkins for his neurology residency and a clinical and research fellowship in neuroimmunology. He is committed to a career that combines competent and compassionate care of patients with multiple sclerosis and other immunologic disorders of the nervous system with basic and translational research aimed at developing and improving therapies. He is also the program director of Multiple Sclerosis Review, which is a continuing medical education program accredited by Johns Hopkins. It includes a podcast featuring discussions about clinical topics and patient scenarios with doctors and nurses treating people with MS in order to educate health care providers on the best care for people living with MS. Geoff Allix (1m 25s): If you haven't already, please consider registering at www.overcomingms.org. This way you can stay up to date on all of the latest MS news, including new programs and initiatives. Again, that's www.overcomingms.org, and look for the register button in the upper right-hand corner of your screen. Now, let's get on with a podcast. Geoff Allix (2m 5s): Welcome, Dr. Kornberg, and might I call you Michael? Dr. Michael Kornberg (2m 9s): Absolutely. Thank you for having me. Geoff Allix (2m 12s): To start off with, we've established you work at John Hopkins and that covers a wide range of neurological research, but what are your particular areas of research interests? Dr. Michael Kornberg (2m 31s): I specialize in multiple sclerosis both in the clinical work that I do taking care of patients and also in my research. I care almost exclusively for people with MS. I have a research program that, in essence, is attempting to understand particularly progressive disease, the reasons that Myelin Repair fails, and how we can modulate those processes to better treat people with progressive MS. I'm also interested in how dietary therapies and basic metabolism impacts the immune system, and how we can modulate the immune system in people with MS and other auto-immune diseases through metabolism and diet. Geoff Allix (3m 19s): Okay. Those are both areas I think which would be particularly interesting to our listeners. Just on the first one, there's an awful lot of drugs and treatments available to try to slow down or prevent MS relapses, lesions, and so on, but remyelination, that's almost the holy grail, I think. A lot of people with MS would certainly see that as "Okay, we're on treatment. We're living a lifestyle. We've lessened the progression, but can we get back anything?” Geoff Allix (4m 2s): Do you see that as something that we will see in the relatively near future? Dr. Michael Kornberg (4m 5s): I do. I think that relatively near future is obviously subjective to some point. I don't think that we're going to have a remyelinating therapy within the next two to three years, but I think on the timescale of five to 10 years, it's absolutely a possibility. It's easy to, I think, lose sight of how much progress there has been in the MS world in terms of therapeutics. Dr. Michael Kornberg (4m 44s): Up until almost 2010, there were really only a handful of therapeutic options for relapsing MS. Within the past 10 years, we've had this explosion of therapies. As a result, I think we are in a pretty good place in terms of the treatments that you discuss, in terms of preventing new attacks of MS, flare-ups, new lesions forming on MRI, which we know makes a big difference in the course of someone's disease. The goal is always going to be to diagnose MS as early as possible and start those treatments as early as possible but we're always going to have a group of people who, unfortunately, have been left with a permanent disability from prior attacks. Dr. Michael Kornberg (5m 36s): We are at a place where I think that over the past five to 10 years, we've gained a lot of knowledge about why Myelin Repair fails in people with MS and what drives that process. There is a big gap between understanding why that happens in a research lab and translating it into something that we can give to patients. I think already, we've made a lot of progress in terms of understanding how to measure Myelin Repair in people. We have a lot of good candidates that we can take from a research lab into clinical trials. Dr. Michael Kornberg (6m 17s): I don't think we're a couple of years away, but I certainly think within the next 10 years, it's reasonable to think that we will have therapies for Myelin Repair. Geoff Allix (6m 29s): Is it even possible that someone with progressive MS, who might be wheelchair-bound now, that actually there could be some level of reversal of their symptoms, or would it be a stabilization? Dr. Michael Kornberg (6m 46s): Yes, so a little of both, but I think it's important to have set reasonable expectations at least, with the caveat of everything I'm saying that this is my opinion. It is my interpretation of the data we have now and what I expect is the progress of what is going to be in the future. There are two separate goals in that that you mentioned, halting progression, and promoting recovery of function. I think to an extent, there might be different therapies that are targeted at those two distinct elements. I do think it is going to be possible to repair myelin and actually lead to the recovery of function. Dr. Michael Kornberg (7m 34s): I think it's important to be realistic about what we might be able to expect in that scenario. Those remyelinating therapies are going to be most effective in people earlier on in the disease who have not had a longstanding, severe disability. For the reason being that in later stages of MS, people who've had progressive MS for a long period of time, one big problem is brain atrophy. You actually lose those nerve cells themselves. Whereas it’s easier to repair the myelin coating that covers the neuron processes, it's much harder to get neurons to regrow. Dr. Michael Kornberg (8m 20s): At the later stages of MS where you just don't have neurons there to remyelinate, that is a big challenge. The goal with remyelinating therapies is still going to be to treat people early on in the course of their disease before they'd gotten to a point where there's been neurodegeneration and we've lost brain tissue that we can't get back. I think along those lines, what I would have in mind, what I would hope for as a realistic goal in 10 years is that if someone has lost vision from an episode of optic neuritis, which is common with MS, we can get their vision to improve. Dr. Michael Kornberg (9m 7s): If someone has difficulty walking, that we can create a meaningful improvement in their walking ability. If you're talking about someone who is wheelchair-bound and has been wheelchair-bound for years, getting them out in the chair and walking is a very ambitious goal. I wish I could say that is realistic considering that timeframe, but it's probably not. I have in mind making improvements in people's function that are meaningful to them in their lives, but we have to have some realistic expectations of what that'll mean. Geoff Allix (9m 46s): Okay. The other thing you mentioned as a research interest is diet. Now overcoming MS is a lifestyle charity, which includes medication as well. It also will look at diet, exercise, mindfulness. Do you think that diet has a meaningful effect on the progression and the immediate lifestyles to someone with MS? Dr. Michael Kornberg (10m 19s): I think it does, but I also think that we don't know nearly enough about what specific diets are best for someone with MS. I think that we have a tendency to get carried away and some of what we extrapolate from what we see in research models vs people. Ultimately, there are certain things we know for certain. We know that people who are overweight or obese tend to have a more significant disability than people who aren't over time. Dr. Michael Kornberg (10m 59s): We know that people with certain comorbidities like high blood pressure and high cholesterol develop more disability over time. I'm talking about people with MS who have these co-existing conditions. We know that a healthy diet and a moderate amount of aerobic exercise are generally good for health. They are particularly good for people who have multiple sclerosis. The next question that comes up is, "So what diets are particularly good for MS? What diets protect my brain from being attacked by the immune system, or promote recovery and function?" Dr. Michael Kornberg (11m 44s): That's the place where there's a big chasm between what we're finding in the research world and what we've seen in people. I'm someone who is a strong believer in basic cell metabolism. Because of that, diet can have an impact on how the immune system functions and possibly even how the brain repairs itself, but we really don't know in people. People are much more complicated than what we're studying in the lab. We don't yet know which of those diets are helpful, which aren't. We see a lot of things on the internet about this food being pro-inflammatory and this food being anti-inflammatory. Dr. Michael Kornberg (12m 28s): In my opinion, that goes well beyond what we really know at this point. The way that I counsel my patients is that, as a general rule, the same prescription for general living we would give to everybody, everything in moderation, favor whole foods over processed foods, and getting aerobic exercise. If someone really wants to have a particular diet to follow because for some people that structure is helpful, I always recommend the Mediterranean diet, which is really the only diet that is clearly been shown to have a broad health benefit in people. Dr. Michael Kornberg (13m 12s): There are a number of other diets that your listeners might be familiar - the Wahls diet, the Swank diet, the paleo diet. The way that I talk to patients about it is that, generally, if someone commits to one of those diets, usually their diet is improving relative to what it was. They're often going to lose weight. They're often going to feel better. As long as it's not some extreme diet that really carries some potential risk, I am all for it. I just recommend to people that they do what works for them. Dr. Michael Kornberg (13m 52s): In my research, I'm particularly interested in the ketogenic diets because of how that might impact the immune system that we've seen in the research model, but I'm very wary when I talk to the patients. You have to understand that things like the ketogenic diets are very high in fat. We don't know what the negative consequences might be of that over time in terms of cholesterol levels and that's all being studied. It's worth talking about your dietary choices with your doctor. We need to understand that we don't have a great deal of knowledge yet about how some of these diets affect the body over time, but a generally healthy diet is certainly an important part of care for people with MS. Geoff Allix (14m 46s): Well, Overcoming MS is based originally on Swank, but essentially a whole food plant-based diet plus seafood. I asked my neurologist when I first decided to go this way, and he said, "Well, there's just no proof out there. We just don't have the evidence base, but ultimately, it's going to be good for you and it will reduce your risk of heart disease, strokes, diabetes, those things. If you looked at the upsides and the downsides, it's not going to do harm. You might miss some of the things that you liked to eat, but other than that, it's not going to do your health any harm." Geoff Allix (15m 35s): The problem is getting the research, isn't it? It is very difficult when you can't have the double-blind placebo trial of someone eating one thing or not eating that thing. You'll know if you eat it or not. Dr. Michael Kornberg (15m 46s): Yes, that is very hard. Diets studies are really hard, which is why that science is lagging behind but we're getting there. They're not impossible to do. I'm currently doing a dietary study with the ketogenic diet. It's possible but it's much harder than a randomized drug trial. Geoff Allix (16m 14s): You mentioned ketogenic diet. There's a lot of people that I come across who are quite successful in their MS treatment who use fasting. Actually, Dr. Valter Longo, who is very much into fasting, was saying that primarily, what you're doing is you're getting the body into that ketogenic state. What I think people traditionally think of as ketogenic, which is that specific diet where you are eating very high fat. Bulletproof coffee is something where people have massive amounts of caffeine with butter in it. Geoff Allix (16m 56s): They're specifically very high fat, very low carb diets. Yes, that would get you into ketosis but so would fasting. You don't have to go down this very high saturated fat route. You could actually get some of the benefits in other ways. Fasting isn't a pillar of OMS. It's not something that's particularly mentioned, but I think it's one of those areas of particular interest because so many people are mentioning it. Is that something where you think maybe a fasting method and introducing ketosis through fasting may prove to be something that's the future? Dr. Michael Kornberg (17m 38s): Yes, absolutely. I think it may be, but I would still put intermittent fasting in the category of we just don't know whether it is beneficial for people with MS and what the potential downside might be in the long run. I think it is certainly an exciting area of research, not only for MS but for a whole host of human diseases. There certainly is a lot of, at the level of animal models, great evidence. Dr. Michael Kornberg (18m 20s): You mentioned bulletproof. Looking at intermittent fasting in MS animal models, people who do that research will make the argument that we evolved as humans in an intermittent fasting type of model because when food wasn't so readily available, you can go on these long stretches without eating and the body is designed to work that way. That's a compelling argument, but still, I think we have to be a little bit careful about taking what sounds like a very plausible hypothesis and has some support in animal models and just extrapolating it to people without doing those studies. Dr. Michael Kornberg (19m 9s): Again, what I tell people who want to do intermittent fasting is, as long as they are not doing something totally crazy, then I'm all for it. Generally, they are going to be healthier just liked we talked about in all those other diets because if you are condensing your eating to eight hours during the day, you eat less, absolutely. There may actually be something about the ketosis that you enter into during those fasting periods that's beneficial, but we just need to have better evidence in people before we should be recommending that broadly because until we have that data, it all remains an extrapolation. Dr. Michael Kornberg (19m 58s): We don't know for certain that there couldn't be any downsides to doing that as well. Geoff Allix (20m 3s): Yes. Certainly in my lifetime and certainly going back to my grandparents, the way we eat has changed massively. I've got teenage children and we just ask them earlier what they wanted to eat tonight. We're going...
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Coffee Break #21 with Julie Pankhurst | S3E40 bonus
08/30/2021
Coffee Break #21 with Julie Pankhurst | S3E40 bonus
Welcome to Living Well with MS Coffee Break #21, where we are pleased to welcome Julie Pankhurst 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 . We hope you enjoy this episode’s conversation with Julie, coming to you straight from Surrey, England. Julie’s Professional Bio (in her own words): I trained to be a software engineer straight out of school in the mid 80s. There weren’t many female engineers at that time, which appealed to me a lot as at age 18, I wanted to prove that I was just as good as any man out there! This perhaps stemmed from the friendly competitive nature between my brother and me (a friendly rivalry that still exists today!) In 1999, while pregnant with my first of two daughters, I used a website called phonenumbers.net and literally over a weekend I was able to track down my grandfather, who had left his wife and child (my father) in the 1940s to set up home in Denmark. This was the first time that I recognized the enormous power of the Internet. In the 1990s it seemed that everyone was looking for the next big Dotcom idea. While many people were putting their shop online, I sought ideas that could appeal to an even wider range of people. This was when I had the thought that everyone in the UK went to school and might like to know what had happened to their old primary school friends, just like I did in the case of a friend who had left London to live in Edinburgh when she was 10. This was the simple idea behind FriendsReunited, which was set up in 2000: a UK website through which people could easily track down their old school chums by searching for the year group within their school. My husband and I sold the company in 2005 and since then have taken great delight in being parents, philanthropists, and travelling. Julie’s MS Bio (in her own words): Over the last seven years or so I’d seen my GP once a year with issues that were niggling me: memory problems, pins and needles in my feet, incontinence, balance, and walking issues, etc. These were all dismissed as nothing significant. My memory problems concerned me greatly but when I suggested that I wanted to pay for a full health check I was told not to waste my money. A year later, on Valentine’s Day 2019, my husband and I each had a full health checkup which included brain MRIs. The doctor first thought my symptoms were due to being peri-menopausal until she saw the results from the brain MRI. This is when it was pointed out to me that I had lesions in my brain which could be MS. I visited a neurologist who diagnosed me with primary progressive MS. My world fell apart. All the dreams that I had to travel the world once our daughters left school disappeared. In June 2019 a friend mentioned the OMS program. On researching further, I learned that there was going to be an OMS retreat the next month. I signed up straight away. I did not know anyone with MS and went to this retreat feeling very alone and scared of seeing how my future was going to be. I left the retreat having made many supportive friends and incredibly positive about my future. OMS gave me the tools to be proactive daily rather than simply seeing a neurologist just once a year. In November 2019, an agonizingly long time after my first diagnosis, I got to meet a NHS neurologist who almost immediately said that she did not believe I had primary progressive MS but instead she thought it was relapsing remitting MS. I still am not sure what type of MS I have but whatever it is I am hopeful that by following the OMS lifestyle and having Ocrevus infusions I can stop it in its tracks! Questions: Julie, 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. Can you tell us a little about your day-to-day life? When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? I understand you used to be a vegetarian and then a pescatarian pre-OMS for over 15 years. Did that help you adjust to the OMS diet? You also have quite an interesting daily fitness regimen. Tell us more about Zoom yoga. What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them? When did you first start to see any kind of positive indicators in following OMS guidelines? What were these? In looking at your professional past, you and your husband started a company in the early days of the Internet boom, which you then sold in 2005 allowing you to focus much of your time on philanthropy. In full disclosure, your charitable trust is one of the supporters of this podcast, for which we’re very grateful. Why is philanthropy so important to you? What kind of impact would you like to make in the world? Why was it important for you to offer philanthropic support to OMS, and what advice would you give to others about supporting OMS? I learned about an interesting hobby you have – exploring family ancestry. In fact, your ancestry was indirectly responsible for the successful Internet company you and your husband launched. Can you share a little more about your genealogical bug? Back to the topic of MS, something quite topical these days is the question of people with MS and the need to get vaccinated. You’ve been vaccinated but the DMD you’re on has had a strange effect on your antibodies. Can you speak to that and share your thoughts on what it might mean to our audience? Julie, we are ever so grateful for you 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 with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? Interesting Factoids About Julie Julie loves photography, and she intends to focus (pun intended) on it more in the future. Julie is passionate about researching her family ancestry through a website she created, genesreunited. Through the site, she has been in contact with her father’s half-sister, who never knew she and her brother even existed! Julie keeps fit physically and mentally through daily Zoom yoga sessions. Julie and her husband are active philanthropists (including support provided to this podcast through The Happy Charitable Trust). Two of her other favorite charities to support are and , as their focus is to empower people in less economically-developed countries. Through Plan International UK, Julie and her husband have sponsored children and helped to build several schools around the world and have been privileged to visit them, too. Julie’s Links: Follow Julie on Check out other Twitter feeds Julie loves: , , and Julie loves the yoga website , run by OMS facilitator Julie gets great health tips from Coming up on our next episode: Tune in on September 8, 2021, for the next episode of Living Well with MS, where Geoff sits down with , an Assistant Professor of Neurology at the world-renowned in Baltimore, Maryland. Dr. Kornberg is on the forefront of scientific research in MS, and he’ll share some of his insights into what’s on the research horizon for today and beyond. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing .
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Ritu Kaur: A One-Woman MS Awareness Machine | S3E40
08/18/2021
Ritu Kaur: A One-Woman MS Awareness Machine | S3E40
Ritu Kaur is no ordinary woman. She is creative, accomplished, life-loving and, after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone. Nor does MS define a person; only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her deft use of social media, Ritu is building a platform where people with MS and their supporter can get counsel and emotional support… where they feel loved, accepted, and confident. Questions: Welcome to Living Well with MS, Ritu! I believe your full name is Surjeet. Is Ritu a nickname? There are many thousands of people around the world that know the name Ritu thanks to the work you’ve undertaken to build a community around the cause of raising MS awareness. First off, can you share a little bit about your personal background and connection to MS? After receiving your diagnosis, what were some of the chief factors that pointed you in the direction of the work you do to raise awareness of MS? Why do you think it’s so important for MS awareness to improve? How does what you’re doing supplement the work of MS organizations like the MS Society? Where’s the gap that you saw from your own personal experience with MS? You’ve been quoted as saying “through my efforts I am trying to remove the fear about MS and the taboo associated with the disease.” Can you speak to the stigma around MS you’ve witnessed and how you’ve decided to confront and overcome it? You’ve built an amazing global community of over 17k people on Instagram, the link to which can be found in our show notes, and as I understand it you have 121 personal relationships with many of them. Why do you feel community is so important? How do you feel the community you’ve built has made a difference in the lives of people with MS? You’re based in India. What do you see as the specific challenges there in terms of MS awareness and acceptance, and how are you working to address this closer to home? Shifting gears a bit, you have a background in marketing, and I know you’ve applied some of these skills to creating some pretty amazing awareness campaigns, the links to which can be found in our show notes. How have these made an impact? If all the work you do building community and raising MS awareness isn’t enough, you’re also giving me a run for the money by being a creator and host of a podcast, 10 Minutes for MS. I suppose that’s yet another great way to reach people with your message, but since we’re chatting as part of a podcast, what do you think that platform provides you for advancing your cause that others don’t? On a personal note, how do you find time to stay healthy and balanced given how much time you dedicate to the cause of MS awareness? Your motto is to “spread awareness with love and happiness”, which is beautiful. But sometimes, and hopefully rarely, you might find yourself suffering the blues. How do you personally cope with that, and what advice would you give to others? Thanks so much for being on our program, Ritu. You are truly an inspiration to the MS community, and the work you’ve done has already helped transform the MS landscape. On a final note, if you look back 5 or 10 years from now, what is the single greatest change or impact you would have liked to have made with the work you’re doing? Bio: Since her diagnosis in 2012, Ritu has gone on to create a global community for MS patients and caregivers. Ritu has created a hub for education, awareness and acceptance of MS amongst the PwMS’ families, friends, colleagues and society. Through her efforts, she is also trying to remove the fear, social stigma and taboos associated with MS to create acceptance. She believes that anything can be overcome with Love and Positivity and that is her motto: Spread Awareness with Love and Happiness. With the support of her family and using her marketing skills, she has single-handedly taken up this mission of bring a change to the way MS is perceived today around the world. Links: Ritu and multiplesclerosis.awareness on Ritu’s story as featured in Ritu’s channel Ritu’s page Ritu’s podcast, Check out some of Ritu’s global MS awareness campaigns: Some of Ritu’s live interviews with doctors on IGTV and MS Warriors: Ingels: Michael Murray: Tom O’Bryan: E Stem Cells Therapy:, Coming up on our next episode: Pack your listening bags for Surrey, England on the next episode of Living Well with MS Coffee Break #21, premiering August 30, 2021, when we introduce you to entrepreneur and philanthropist . You won’t want to miss her fascinating personal story, and hopefully her shared experience with MS and the OMS program will enlighten and inspire you! Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing . S3E40 Transcript Ritu Kaur: A One-Woman MS Awareness Machine Geoff Allix (1s): Welcome to Living Well with MS, the podcast for Overcoming MS and people with multiple sclerosis interested in making healthy lifestyle choices. I'm your host, Geoff Allix. Thank you for joining us for this new episode. I hope it makes you feel more informed and inspired about living a full life with MS. Don't forget to check out our show notes for more information and useful links. You can find these on our website at . If you enjoy the show. Please spread the word about us on your social media channels. That’s the kind of viral effect we can all smile about. Finally, don't forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Geoff Allix (44s): Now, without further ado, on with the show. Ritu Kaur is no ordinary woman. She's creative, accomplished, life-loving, and after getting diagnosed with MS, has made it her single-handed mission to educate people about MS to reduce the stigma around it and lessen undiagnosed and misdiagnosed cases. MS is not the same for everyone, nor does MS define a person. Only their courage and strength do. With love and kindness in her heart, Ritu has taken to spreading awareness about MS and building a community around the globe to create acceptance of MS among people with MS and their families, friends, colleagues, and society. Through her adept use of social media, Ritu is building a platform where people with MS and their supporters can get counsel and emotional support, where they feel loved, accepted, and confident. Geoff Allix (1m 32s): Welcome to Living Well with MS, Ritu. Ritu Kaur (1m 35s): Thank you so much. Geoff Allix (1m 36s): I believe your actual name is Surjeet. Is Ritu a nickname? Ritu Kaur (2m 6s): Yes, Geoff. Ritu is my nickname, but people love this name Ritu. It’s just easy to pronounce. They feel that it's more comfortable for people to say Ritu. They feel that closeness to me when they call me Ritu so yes. Surjeet Kaur is my official name, but people call me Ritu as well. Geoff Allix (2m 25s): Okay. If you see the two names, it's the same person. There are many thousands of people around the world that know the name Ritu, thanks to the work you’ve undertaken to build a community around the cause of raising MS awareness. First off, could you share a little bit about your personal background and connection to MS? Ritu Kaur (3m 10s): Thank you so much for this wonderful introduction. When it comes to me, I was diagnosed with MS in December 2012. I got this as a Christmas gift from God. I know that it was given to me for a reason, and the reason was to help people all around the globe. That's why I took up this mission of spreading awareness. Yes, MS was unknown to me, and I was too scared. I did not know if I'll be able to see my birthday coming up the next month in January, but it all passed. Ritu Kaur (3m 50s): I sailed through everything. I sailed through the storms, through horrible symptoms I had, everything. I believe the support of my family and God's blessing really helped me through that. When I was diagnosed initially, I had symptoms. I had my right-side numbness. The symptoms got so bad that I could not even pick up a spoon to eat. My mom had to feed me with her hands. I had sensitivity over my right side that even with a strand of hair touching my skin, I would scream out in pain. Ritu Kaur (4m 39s): All these symptoms lasted over three weeks’ time and doctors could not diagnose them initially. Then I met the right doctor in Mumbai. He did my MRI and he said, “It looks like MS. We will have to do your lumbar puncture as well.” It was all quick. He did my lumbar puncture; my report came within two to three days. It said I had MS. I spent Christmas celebrating it in the hospital. From the New Year, I started DMDs, which was Avonex. Ever since then, I have been on a mission to spread awareness. Ritu Kaur (5m 19s): The main thing here was I felt very lucky to know that I was diagnosed with a problem. I know what I had. My sister is a neuro-specialized physiotherapist. She was a valuable help with my complete diagnosis and contacting the doctors. I had guidance but what about the people who do not have people to guide them to the right doctors to meet? They are not in the right city wherein they have such qualified neurologists, especially in India. I also realized that the treatment is so expensive in India. Ritu Kaur (6m 11s): My one Avonex injection would cost me 10,000 rupees. How many people can afford that? There are people who have a salary of just 10,000 rupees. All those things really touched me. I said, “I have to do something.” One more thing I saw, when I was diagnosed, there were so many friends and colleagues who said, “You should not talk about these kinds of problems to people. Those issues, keep it to yourself.” Some of the people also said, “You should get married immediately because you can't live alone.” I said, “No. Even though I have MS, I want to be independent the way I have always been. Trust me, I will prove to be stronger than I ever was.” I have two challenges here. Ritu Kaur (6m 57s): I had to prove to myself that I am perfect. I’m fine, there’s nothing wrong with me. I also had to face a society who said, “You should keep your identity hidden. You should not tell people that you have MS,” because people see someone with a disease, they feel, “She has a problem. Let's stay away from that person. Maybe I'll get it. Maybe it's contagious. You never know. Maybe you'll have problems getting married. You will not get a guy who would like to marry you in the later years of life so get married immediately.” Why is there so much social stigma? Why is there so much of a misconception? Why don't people come to know that they have MS for years of staying with this disease? If someone has MS, will that person ever know they have MS at the right time? Also, the expensive treatments. It was all, together, running in my mind. That's what inspired me to take up this challenge and do something. Geoff Allix (7m 34s): How do you think what you do fits with big organizations like MS Society around the world? How is your work different from theirs? Has it supplemented them? Ritu Kaur (8m 17s): MS Societies are societies. They have lots of contacts. They are politically driven. They are doing their own jobs but I, as an MS patient myself, understand what MS feels like. It’s a different game altogether. How I connect to people personally is something maybe the societies cannot give. If you write a message to the MS Society, maybe one of the employees will message you. They will connect you with someone else and the other person. Yes, of course, they have more contact with doctors. Ritu Kaur (8m 58s): They might be able to help in more detail but what I give it to MS patients personally is precious. Tomorrow, if someone writes a message to me, I have the responsibility to answer them myself, not a second, third, or fourth person. They get answers from me. It’s just me here. That is the personal connection, the personal touch, and the language I can give which the other societies do not give. Trust me, when some other patients messaged me, they have a problem and they are in Africa, India, or any other country, even in Pakistan, or any place, I message their respective MS Societies and connect them. Ritu Kaur (9m 45s): This is a patient in your place, in your area, can you help them with the required doctor, required facility, medical assistance, financial assistance, or anything that they are asking for. Here, I'm a connection between the societies and the patients. Whatever I can give them personally, like mental support, I'd give them. Of course, I know that something is beyond my capability. I can't have a connection with doctors in South Africa. I don't know who to connect with. For that, of course, you must reach out to the societies. Geoff Allix (10m 4s): You've talked about your relationship as an individual, but you've got a community of over 17,000 people on Instagram. As well as being an individual, do you feel that there's a community between those people? Ritu Kaur (10m 46s): Yes, of course. There's a strong community between those people as well. What I do is I just provide them with a platform wherein all MS patients can meet and connect with each other. Sometimes, I take Zoom meetings wherein I invite people to join and we have a community forum there. People can discuss their problems, guide each other. That is one way. Otherwise, if someone has a problem, I post it on my page and there are other people answering with some tips they have to that problem. They interact with each other. Ritu Kaur (11m 35s): The introduction that you see on my page, I think I'm very proud of that. In fact, I know that MS Patients in my community have become such good friends, they have met each other offline, and they are like best of friends. Not just them, it was me also because I'm an MS patient myself. Even I have made friends and families all over the world now. Tomorrow, if I go to the US or UK, anywhere, I know I have a sister there, or maybe I have a best friend. That's the kind of community I have created. You can feel comfortable in that community. You have people who can understand you and love you. Geoff Allix (11m 52s): You're based in India. What do you see as specific challenges in India in terms of MS awareness and acceptance? Are there things that you can do to address those in your homeland? Ritu Kaur (12m 36s): Yes, absolutely. When I got the MS initially, I did not know MS. That is the first thing that there is no awareness about MS. When I had visited New York previously, I saw that there were banners and posters about multiple sclerosis in the metros. People could read that there is something known as MS. We do not have a banner or anything like that in India. I have not seen it, at least. The other thing is that the MS Society should shout out and see we are doing MS Walk, MS Marathon. It is also done in India but on a smaller scale. It has not given much of the media limelight. Ritu Kaur (13m 28s): That is something that should have been here, I feel. Initially, when people are diagnosed with MS, they don't want to talk about MS. They have a lot of fear. Like I said, to me, people are advising, “Get married,” or they were saying, “Keep it to yourself. Don’t share the news that you have a problem or a disease.” That's the social stigma that is in India. I think that is the biggest challenge right now, but I'm happy to see that people are now breaking away from that social stigma. When I had started this stage, I started it on Twitter and Facebook initially, and then on Instagram. I saw for so many years, I had not gotten a single follower from India. Geoff Allix (13m 44s): You've mentioned about fear of a stigma. Is it a fear of a stigma or is there actually taboo? Do you get treated differently in India because of having MS? Ritu Kaur (14m 24s): Yes, it's a very important question. It is taboo, of course. That's the reason why people don't want to talk about it. They feel, “If I tell someone that I have the disease, they will not hire me.” If I am a working professional, they will say, “She or he is not capable. Tomorrow, something wrong can happen. Why should we take responsibility for that person?” Of course, it's a big taboo. At the same time, the taboo gives rise to fear in a person. Once someone is diagnosed with MS, they don't want to talk about it because they don't want to be treated differently. Ritu Kaur (15m 7s): That's the thing. That's why people are scared to disclose that they have MS. When I had started these pages earlier on Twitter and Facebook, and then on Instagram, I did not have any of the Indian followers. Now, I'm very proud to see that I've got so many Indian followers. It really feels good to receive messages from some of the followers saying, “Thank you for being an Indian and raising this kind of awareness because this really gives us a lot of strength that someone, a person like me, is doing this social work.” Ritu Kaur (16m 10s): This is the kind of strength I am personally giving to the Indian people, which I'm really happy about. In fact, I also do live sessions on my Instagram page, wherein I invite MS Warriors to come and share their stories. I was very happy to see that some of the Indian patients also joined my live Instagram and shared their stories, which earlier, they did not even want to talk about or accept the MS. Yes, India is a different country with lots of cultures and lots of different thoughts and different kinds of perceptions to deal with. I think it's getting quite modern now and people want to talk about the things which are once considered to be taboo. I'm just really proud to be one of them to bring that change to India. Geoff Allix (16m 30s): Just to change the subject, you've got a background in marketing, and you've applied some of your marketing skills to some pretty amazing awareness campaigns. There are links to all those in the show notes, as well as your social media channels. How do you think those awareness campaigns have made an impact? Ritu Kaur (17m 13s): Yes, I'm a marketing professional and I have done a lot of video campaigns. This was the aim of spreading awareness in a fun manner. We do see videos wherein someone comes and sees, “MS is bad. MS gives me this kind of problem. I'm having this kind of pain.” We had those kinds of crowdsource videos. What about showing people a different side of MS? “Yes, I have a problem, but you know what? MS can’t stop me. I still can do and achieve the dreams that I want to.” That's what my campaigns are mostly about. Ritu Kaur (17m 56s): My recent campaign was we switched MS, which showed initially that I've got pain in my leg. I've got numbness in my leg, but the next flip of the switch was, I'm running. I'm still running in the marathon. This kind of fun campaign is actually admired. People really liked to participate in it worldwide. I've got an audience from the US, UK, Australia, India, Africa participating in these kinds of campaigns. The other...
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Coffee Break #20 with Gillian Robertson | S3E39 bonus
08/09/2021
Coffee Break #20 with Gillian Robertson | S3E39 bonus
Welcome to Living Well with MS Coffee Break #20, where we are pleased to welcome Gillian Robertson 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 . We hope you enjoy this episode’s conversation with Gillian, beaming to you straight from Grimentz in Switzerland. Gillian’s Story Gillian has been living in the ski resort of Grimentz in Switzerland for 14 years, after relocating for work 18 years ago from the UK to Switzerland. She and her husband have three grown daughters and two grandchildren, all now living in England. In April 2016, Gillian began feeling numbness and pins and needles in her feet, which gradually spread causing problems with her walking and balance. After various tests and referrals, she was diagnosed with RRMS in January 2017. Following physiotherapy, she started to take a disease modifying drug and decided to follow the OMS program, which she learned about after doing a lot of her own research on MS. She has since been able to return to her favorite sports: hiking, running, yoga, and skiing. She also completed a two-year Diploma in cuisine and patisserie at the Cordon Bleu culinary school and has started a new career as a private chef. Gillian volunteers for Overcoming MS by contributing and testing recipes. She is also a member of the OMS Communications Advisory Group. Questions Gillian, our audience wants to know a little bit about you and your life. Can you share some background on where you’re from, what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Gillian Robertson is? How about your experience with MS? Can you provide some context on that? When were you diagnosed and how did you initially cope with it? At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it? What are some of the challenges you’ve faced at first in adopting the OMS program? How did you overcome them? When did you first start to see any kind of positive indicators in following OMS guidelines? What were these? You’ve been a valuable contributor to the OMS community. For example, contribute recipes to the OMS website. What’s that experience like? On a personal note, do you have any unusual interests or wacky hobbies you can tell us about? What kind of stuff will we find you doing on a weekend? If you tap into your personal experience for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be? 3 Fun Facts About Gillian (in her own words) I am passionate about food, cooking and eating! Always have been. I am someone who lives to eat, rather than eats to live. Following the OMS program has not changed that, and whilst there are some limitations on the types of food I can eat now, meals can still be just as delicious at the same time as being OMS-friendly. I love the outdoors and feel very lucky to be living in the mountains, where I can ski in the winter and run, hike, and bike in the summer. I really believe that making the most of the outdoors greatly improves our physical AND mental health. I am always working to improve my foreign language skills. Having lived in Italy and Switzerland I have had plenty of opportunity to do so, and can now speak French, German, and Italian to varying degrees. Great brain-training! Gillian’s Links Follow Gillian on , where she posts OMS-friendly recipe ideas, as well as photos of her cooking and life in Switzerland. This is a great site for , many of which are OMS-friendly or easily adaptable. This is a great to browse through, with lots of vegan and fish recipes which are OMS-friendly or easily adaptable. Here’s a for guided meditations/music for relaxation. Here are some for all levels. Gillian clearly loves languages, and she thinks this app makes a lot of fun. Coming up on our next episode On August 18, you can “meet” India’s , who has taken up a one-woman effort to raise awareness about and destigmatize MS. She truly is an MS awareness machine! And don’t forget to submit your questions for Ask Jack #4 by August 23 by emailing them to . Ask Jack #4 premieres on September 15. Don’t miss out to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing .
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Rethinking Exercise for People with MS | S3E39
07/28/2021
Rethinking Exercise for People with MS | S3E39
We all know that is a key component of healthy living, and particularly important too if you have MS, which is why it plays such a prominent role as one of the steps of the . But did you know that when you’re exercising your body, you’re working out your nervous system as well? Our guest on this episode of Living Well with MS, Dr. Gretchen Hawley, will explain neuroplasticity (for us lay people, that’s the brain’s ability to continually change, a sign of brain health) and how exercise can impact it, as well as share her insights on helping people with MS improve their strength, balance and mobility. Bio: Gretchen Hawley is a Doctor of Physical Therapy and a Multiple Sclerosis Certified Specialist. After graduating from Simmons University in Boston, she developed a Multiple Sclerosis program alongside two of the city's top MS neurologists. Dr. Hawley utilizes the concept of neuroplasticity to improve strength, balance and walking in those with MS by using specific, functional exercises. She has been a keynote speaker at several National MS Society events and other MS focused conferences in 2018 and 2019 and presents frequently to MS groups. Dr. Hawley brings a keen understanding of the challenges faced by people living with MS and has developed a virtual physical therapy program to help people improve their MS symptoms while in the comfort of their own home and guided by an MS specialist. Dr. Hawley resides in Buffalo with her dog, Finn. Questions: We hear a lot about new training methods, such as HIIT (high intensity interval training); is it effective for people with MS? How long should the intensity intervals be? If you’re doing strength training as well, should you do cardio before or after? What are different types of strengthening for people with MS? How does an “MS-specific” exercise differ from regular training? Can you provide some examples of “MS-specific” exercise? What’s the right exercise order for different types of exercises? Is it better to do an exercise like walking even if you’re having an off day and do it badly or wait till you can do it well with good form? How do you find the motivation to exercise consistently? Do you recommend days off from exercise? You have an online wellness program called . Can you tell our audience a bit about it? Links: Learn more about Dr. Gretchen Hawley’s online MS wellness program, (SPECIAL OFFER! $15 off any membership if you use promo code OMS2021) Check our Dr. Gretchen Hawley on Check out Dr. Gretchen Hawley on Check out Dr. Gretchen Hawley on Watch Dr. Gretchen Hawley’s video Learn more about Coming up on our next episode: Next up from the OMS podcast family: starting August 9, meet Gillian Robertson, who lives in the UK and volunteers as a recipe contributor to the OMS website, on Living Well with MS Coffee Break #20, part of our ongoing series introducing you to members of the dynamic OMS community from around the globe. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show.
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Ask Jack #3 | S3E38 bonus
07/21/2021
Ask Jack #3 | S3E38 bonus
Welcome to our third installment of Ask Jack, featuring the prodigious culinary talents of professional holistic chef answering food-related questions generated by you, our community. Check out the show notes below that dig deeper into the topics covered on this episode. Set your dials to this station when Ask Jack #4 premieres on September 15, 2021, just in time to kick off autumn (for one half of the world, at least). Don’t forget to submit your questions for Jack by emailing them to . Introduction Now, on to this episode’s main theme: Summer is for Eating Well! In this episode, we dig into (literally) into some topical questions about foods and activities that are part of every summer culinary package, and Jack makes sure to advise you on how to make sure they align with your OMS diet and still taste great. Given how central a role grilling (or BBQing to some of our listeners) plays in summer eating, we focus mostly on understanding the growing segment of meat replacers and how they fit into the OMS diet, plus addressing summer cooking ideas and techniques. Questions 1 + 2 Our first question comes from Mathilde in London, and it harkens back to a popular theme on earlier episodes – cooking appliances: I know that Jack already talked about various cooking appliances, but I was wondering what were his thoughts about ? My understanding is that it is a great one when it comes to controlling temperature. Is that true? Our next question, from Gina in Bristol (UK) is about reheating food, which is relevant for summer and all seasons: When I make a stir fry or soup, I sometimes add olive oil or sesame oil after cooking while the food is still hot. I also like to batch-cook and am wondering what is the best way to reheat foods that have some oil in or on them (roasted vegetables come to mind)? Is it problematic to microwave leftovers? Question 3 There was a flurry of questions from our audience about how healthy and are, given they often have loads of chemicals or other “unnatural” ingredients. Jack and Geoff dig into this topic to unpack some of the key points to be mindful of when considering whether to consume one of the many meat alternatives and options on the market. Question 4 Eating outdoors and picnicking are summer fixtures. Many of our listeners wanted to know what are the best types of OMS-friendly foods to bring with you to a picnic? Question 5 On a sizzling BBQ note, Nicola from Canterbury (UK) wanted to hear ideas for things to try on a BBQ. In her experience, most homemade bean burgers just fall apart, and she worries about cooking fish over direct heat. She has had some success with mushrooms in foil but otherwise is out of ideas. Any tips? Question 6 What are the main factors and considerations to ensure your summer cooking is healthy and fun? Jack provides some great overall guidelines to make sure you spend more time enjoying your summer fare and less time deliberating over it. Question 7 Most people associate grilling with proteins, but many of our listeners are curious about the best veggies to make on an open flame and wanted to get some good tips on grilling vegetables. Jack offers some great advice on this topic. Here are some further thoughts on . Question 8 Most meals end with dessert, and so does this episode. One of our listeners asked the following: Do you have any suggestions on what I can bring as a dessert if I'm invited to a picnic? Links: Connect with Jack: | | | Coming up on our next episode: On July 28, tune into the next episode of Living Well with MS for a topic that’s critical to everyone’s good health: exercise. Specifically, one of our favorite guests – – rejoins us to discuss ways in which we can rethink exercise to make it more accessible to everyone. You’ll really get a great dose of advice on how to get into the great exercise groove at all levels of ability, tapping into Dr. Gretchen Hawley’s expertise as a Doctor of Physical Therapy specializing in MS and creator of , and online MS wellness program. Don’t miss out: to this podcast and never miss an episode. You can catch any episode of Living Well with MS or on your favorite podcast listening app. Don’t be shy – if you like the program, leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions by emailing .
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