S3E7 Coffee Break with community member Rebecca Stonor

Geoff Allix  00:01

Welcome to Living Well with MS Coffee Break, a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community. Our guests will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes and for more information and useful links. You can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So get your favourite drink ready and let’s meet our guest. Joining me on this episode of The Living Well with MS Coffee Break is Rebecca Stoner, Rebecca is a wellbeing officer, plant scientist and plant based Nutrition Wellness Advocate. She has worked for nearly two decades in plant science and is certified in plant based nutrition through Cornell University. After being diagnosed with Multiple Sclerosis, she has used whole foods plant based nutrition to reverse all symptoms and halt any further progression of her MS. A passion of helping others has led her to share her inspiring story by workshops, plant based cooking classes and public speaking engagements. Rebecca is passionate about online cooking classes, private culinary instruction, and personal cooking services as a way to show others how nourishing food truly is medicine. Welcome, Rebecca.

 

Rebecca Stoner  01:37

Hi, Geoff, how are you?

 

Geoff Allix  01:39

Yep good thanks. Rebecca, our audience wants to know a bit about you and your life. So could you share some background of where you’re from what you do, any snippets from family or personal life or anything about you that would give our listeners a sense of who you really are?

 

Rebecca Stoner  01:53

Okay, sure. So first of all, I guess I live in South Australia, I live in a town called Adelaide and I also have two children; a little girl and a boy and I’ve worked in science, so that was my background. I studied science, and I’ve worked in science for nearly 20 years and the focus was really on plant science, agricultural sort of work. And then from there, I now work as a health safety and wellbeing officer, which keeps me busy all the time. Beyond that, yeah, we live in a beautiful part of the world and we like to go on lots of hikes and stuff, there’s lots of national parks and things around here. I generally keep pretty fit, I do a lot of yoga and cycling and strength training and stuff like that. So yeah, that’s me.

 

Geoff Allix  02:49

How about your experience with MS. Could you provide some context of that? When were you diagnosed? And how did you initially cope with it?

 

Rebecca Stoner  02:56

The diagnosis was pretty shocking. My son was 2 at the time, so it was about nearly six years ago now. I had lots of different symptoms and I think people with MS have the experience of you know, everybody’s symptoms are different. But mine started out with optic neuritis. So, a couple of years in a row, my vision went a little bit strange and I went to an optometrist and I said, Look, you know, I’ve got slightly double vision, what’s happening? I’ve got a new pair of glasses, and you know, with MS these sort of symptoms resolve and then they come back. So the next year, it was worse and I almost lost complete vision in one of my eyes and I thought that was pretty alarming. So I ended up going to a GP and they said, Look, if there’s any problems with your eyes, you’ve got to go to emergency at the hospital. So I did that, nobody could work it out. So I did the Dr. Google thing which I know you’re not meant to do, but I found online, I don’t know spreadsheet where you could sort of say, Okay, do you have this symptom? No. Do you have that symptom? No and it was about vision. So and then it turned out that it said it looks like you’ve got optic neuritis and that’s like one of the precursors of MS or a symptom of MS and I just thought, Oh, God, could you imagine being diagnosed with like a chronic neurological disorder? So it was pretty awful and that was even before the formal diagnosis. So I pushed the doctors and it took about six weeks to finally get in to see a optical specialist who sort of specialises in neurology as well and she sent me off for an MRI, and that showed that I had about six lesions in my brain and I remember the day I was in her office and she said it looks like you have Multiple Sclerosis. It was kind of like her soft way of saying, you know, this is your diagnosis and yeah, it was pretty awful. My experience with MS, the only person I knew was an aunt and she wasn’t a blood relative, she was by marriage, she had MS. She was very quickly disabled in a wheelchair and now she’s actually living in a quadriplegic unit. She’s still alive, she’s in her 70s, but she’s in a quadriplegic unit. Can’t move any part of her body anymore, she can swallow and she can speak, but that’s it. So that was that, you know, that completely petrified me. So, yeah, I kind of put on my science hat and started reading the evidence and I asked my neurologists, what can I do? Is it anything I can do? Can I change my diet? Can I do any lifestyle interventions? And he basically said, No, there’s nothing you can do. Gave me a whole list of medications and yeah, that was basically his advice. I started on my medication, I took Gilenya for about a year or two and everything was quiet. So during that time, I discovered OMS as well and got on that very, very quickly and then I decided just to give OMS a try. So I ended up going off Gilenya and I’ve been well, ever since.

 

Geoff Allix  06:13

Could you tell us a bit more about how you came across OMS? And why you decided to start following the OMS program?

 

Rebecca Stoner  06:20

Well, so when I was first diagnosed, I had a nurse; MS Nurse come to my house and I thought, well, you know, that’s a serious diagnosis when you have a nurse come and visit you in your home. And she just mentioned like she didn’t have any paperwork or anything, she just kind of mentioned that some people seem to have positive outcomes when they eat a low saturated fat diet and that kind of stuck in my mind and even though I was completely freaked out, and I was reading all the literature about the medications and what else I could do, that kind of always stuck there. I think it was probably within the first three months of diagnosis that I was on a Facebook forum and somebody mentioned to me, have you heard of OMS and I said No, so I looked into it. Yeah and just it looked, there was more evidence behind that then a lot of other things that people were sort of touting as benefiting MS. So I just got on board.

 

Geoff Allix  07:19

Certainly what I found initially with researching was that there was a huge amount of people trying to sell me different things and OMS came along, and they were actually giving me the book and the information for free. So it was really refreshing.

 

Rebecca Stoner  07:34

Yeah, yeah, exactly and I think like all the information is there, it doesn’t matter. You need to sort of be able to sift through the misinformation, though and I think having a background in science, and I could go back to the original articles, you know, read Swank’s articles, and anything I could possibly read, and obviously, George Jelinek’s book as well. And I think all the information is there, so you have to use it, you have to inform yourself.

 

Geoff Allix  07:58

One of the things that really persuaded me about OMS was just the vast quantity of information that the book is, firstly, it’s a very thorough book, but also, there’s huge amounts of references in there. I mean, I still have an interest in science, so I looked into those references and I didn’t check out all of them, because there’s 1000s of them, but the ones I checked out, were all legitimate. And you think, okay, there is some actual scientific background to this approach, which is kind of distinct to a lot of the other MS protocols out there.

 

Rebecca Stoner  08:33

Yeah and I know, there are lots of diets out there that people are recommending for people with MS, some of them sort of, to me have a bit of a paleo feel to them, sort of meat heavy, but I think all of them have something in common, and that’s eating more vegetables, you know, dark, colorful fruits and vegetables, and just sort of packing your diet with that. And the more I read about it, and the inflammation that meat causes, and I just yeah, I couldn’t eat it anymore and the saturated fat content, and all that sort of stuff that’s in meat, I just had to drop it out of my diet and it was actually not a hard transition, for me. I think I did it almost overnight, like got rid of the dairy got rid of the meat, fish and eggs stayed around for a little while, but since then, they’ve sort of dropped out of my diet as well. But I think the thing that was hard was to just, I guess, learn new recipes, and just try and get away because you know, we’ve all got our own nose at seven recipes that we sort of turn over every week and we don’t put anything new into our menu planning.

 

Geoff Allix  09:44

I think it’s particularly hard if you’ve got kids, there’s only so many things that one child will eat that the other child will also eat and then you add in is it healthy and then comes with more complications, so we ended up with a relatively small rotation of menus.

 

Rebecca Stoner  09:59

I know it’s so easy to pick up a packet of something and you know, stick it in the microwave and feed it to them. So my family follows a similar diet. So I basically say they eat a whole food plant based diet that’s low in fat. But it’s low in saturated fat sorry, not low in fat. And my family, eat’s the same, so my husband’s a scientist, and he got on board quite quickly afterwards, when he saw I was doing really well and the kids too, because they have a genetic disposition to developing MS. So I thought, one of the best things I can do for them is get them eating predominantly this way, obviously, they go out of the house, or they go to parties or whatever and they’ll have you know, the treat foods, but at home, you know, they eat the same as me so.

 

Geoff Allix  10:44

Some exciting news, we are pleased to announce the launch of OMS Circles online, the new digital hub for OMS Circles, our global network of community support groups. OMS Circles online will allow you to easily interact with other members of your circle, and share your thoughts, ideas and support all in a safe and secure environment. It was co-produced and designed in partnership with OMS circle members, to truly reflect the needs of the community. Please visit our website, overcomingms.org to find the circle nearest you and sign up and stay tuned for an upcoming webinar to walk you through all the cool new ways to connect with your community using OMS Circles online. And one of the things I think with kids is that actually, they’re still unlikely to get MS. I know they have an increased chance of getting MS, but it’s still not that likely, it’s in the low percentages. But they’re much more likely to get heart disease, cancer or these western illnesses and actually, the Overcoming MS lifestyle reduces the risk of them getting all those things. And actually my neurologist said that he said, “Well, your diet isn’t proven to do anything for you, however, it will almost certainly reduce your risk of getting heart disease, of getting diabetes, of having a stroke, all these western illnesses and that risk is reduced for them naturally,” that’s probably more important, if anything for them.

 

Rebecca Stoner  12:13

That’s right. Yeah, well, and that’s exactly what I felt when I was first diagnosed. Okay, so I’ve got MS, what if I get cancer on top of that? What if I get diabetes? and I just thought I need to do everything I can. And there’s nothing more motivating than fear initially, to make you change your diet. It still surprises me though, that people have a diagnosis like this, they’ve got the evidence in front of them that a diet and lifestyle change will help, may not completely reverse symptoms or, you know, cure their illness, but it really helped them and they still don’t make the change. So yeah, I find that to be frustrating.

 

Geoff Allix  12:48

So you mentioned recipes as being a particular problem. Is that your biggest problem with adopting OMS how did you overcome problems?

 

Rebecca Stoner  12:57

Yeah, and perhaps going out to eat as well, you know, we will sort of sit in a restaurant, look at the menu of “Oh, what can I eat?” You know, it’s all this is off the menu, that’s off the menu. It was just a period of adjustment and educating myself and once I got there, it was easy. And so now, you know, one of my passions is I just, I’m always recipe developing and thinking of new things, and somebody will set me up a challenge. Somebody said the other day that they really would love a potato bake, you know, like the old potato bake, we used to have loads of cheese and cream and I thought yeah, I can do that, I can do that with whole plant foods. So I’m sort of you know, thinking of different things, thinking my way around it to make it OMS friendly.

 

Geoff Allix  13:45

So potato bake, i’n not 100% sure of that in other parts of the world, would it be a bit like dauphinoise potaoto?

 

Rebecca Stoner  13:53

This would be slices of potato. So yeah, potatoes sliced up sort of laid in a pan, usually some onion or something sort of chopped up with it. But the traditional recipe would be lashings of cream, dairy cream poured over it, and then cheese on top, and that baked in the oven and melted. So you bake it so that the potato cooks through.

 

Geoff Allix  14:14

And when did you start to see any positive benefits from following OMS? And what improvements did you see?

 

Rebecca Stoner  14:24

I probably I think within six months I usually say. So the optic neuritis resolved in that time. I would have times of stress though, so my son being 2, he’d have a really big tantrum and it was really strange because within minutes of him starting this tantrum, my vision would go in that eye, so the damage was still there. Or if I got really hot, sort of that would change, but within six months that resolved and so I had lots of other little symptoms too. One of the worst I think was sort of cognitive impairment, I sometimes couldn’t string a sentence together, people wouldn’t notice, but I would notice. And I would just pass it off, like, Oh, I’ve got a two year old, I don’t sleep very well at nighttime. So you know, or I’d make mistakes at work and all sorts of cognitive issues and I felt like I had sort of lost my personality. And I think a lot of that comes with fear as well, like you’ve just all consumed in your diagnosis, and other physical things like fingertips, loss of the dexterity in my fingers to do little buttons and things like that. So, yeah, I’d say within six months, I definitely felt a lot more well.

 

Geoff Allix  15:35

As I mentioned, you’re really into plant based nutrition and spreading the word to others how food can truly be like medicine. How do you do that? And what’s the reception been?

 

Rebecca Stoner  15:46

Yeah, so I, somebody said to me, have you got a website where you sort of talk about what you do and at the time, I didn’t, I thought, you know, I probably should, and it was more for me to sort of document. Okay, I do this for these reasons, I don’t eat these for these reasons and I just felt like having a little bit of a summary of what I do. So I started that, and then you know, I take photos of food, because it’s beautiful. So I started the Instagram page and every time I’d you know, eat something, it’s so vibrant, and colorful and delicious and so satisfying and you know, I’m never hungry, the volumes of food it eat is ridiculous. One of the benefits of eating this way, since I was diagnosed with MS, I actually lost 22 kilograms as well, which is nearly 50 pounds. So yeah, I just started sharing it on Instagram. So I’ve got a Facebook page as well and yeah, people have really loved it, you know, it’s funny, other people who have social media accounts probably feel the same, like you post your pictures or whatever, and you feel like people don’t see it. But I’ll come across people and they’ll say; I cooked a recipe the other day, and it was absolutely delicious. Or somebody contacted me from Canada, she just been diagnosed with MS and we actually did a virtual cooking class together and she said, I’ve been cooking your recipes and I thought, well, people around the world are actually seeing this. So one of the things when I was first diagnosed with MS and I learned this information that diet and lifestyle can definitely help, I just felt like I was compelled and I had a sense of responsibility to share that information. Somebody shared it with me and if it hadn’t, I probably would have found the information eventually. But it’s just sort of, you know, just trying to help people just to feel better and live better lives.

 

Geoff Allix  17:34

As well as nutrition you’re also an avid meditator with a daily 5 am meditation ritual. So how did you build up to that? And how do you manage those early mornings?

 

Rebecca Stoner  17:45

Yeah, so I was a real skeptic about the benefits of meditation when I first read the OMS book. I did go on one of the OMS retreats, when I was first diagnosed and that was one of the best experiences, not only to learn about the diet, and the meditation, and all that sort of stuff, but just to meet other people as well who are on the same journey as me. But the meditation that we did there was incredible. It was 6am every day, I think we’d have one or two during the day, and somebody would guide us through a meditation. So I’d never meditated before and they would sort of just talk us through the breath work and what to focus on and it’s okay, you know, the thoughts come in and out and I was sold, and I being a scientist, I looked into the science behind it and there is evidence to show that it does change your brain in certain ways changes the structure of your brain. So since then, I yeah, I have to get up at 5am, look, my kids are body clocks here, for some reason, they’ve always been early risers. 6am is probably a sleep in for them. So if I don’t get up at 5am, there are little feet running through the house and all sorts of noise. So I really like that calm of the morning. So I set my alarm, I just get up, I’ve got a little meditation space and I listen to a guided meditation, it doesn’t go for very long. 15 minutes, 20 minutes, I’ve also started doing a meditation with my son, at nightime, just to sort of calm him and get him to sleep. So we’ll just do 10 minutes together of probably listening to nature sounds or better music or something like that. Just teaching him how to breathe and relax, It’s been great. I think they say that it takes about 30 days to create a habit and it definitely has, I think there are some times I miss it if I’m not well if I’ve got a cold or if I’m traveling and it’s just hard and I really miss it and I can’t wait to get back into it again. So yeah, I really highly recommend it.

 

Geoff Allix  19:48

And how about exercise? Do you have any tips for the audience on how you can get the fitness and exercise into your daily routine?

 

Rebecca Stoner  19:56

Yeah, so I just try and fit it into wherever I can during the day. So my day job, I work in the city in Adelaide. So I commute, I drive my car halfway down, because I live in the hills, the roads are really windy and steep. So I’ll drive down and then I’ll ride the rest of the way. So my commute is a bit of exercise as well. My lunch breaks, I try and do a bit of yoga, or I’ll go to the gym and do a little bit of strength training. I don’t do you know, I won’t do huge sessions, I’ll do 30 minutes here and there, maybe 40 minutes. Just trying to get it a little bit in every day. We go for walks as family as well and, you know, just try and teach my kids that being active is really good. Just the incidental exercise and I think that’s what I missed when I started working from home when the pandemic hit, I missed that incidental exercise. Just you know, even if I catch a bus or a train, that walking from the train to the workplace is yeah, just trying to be as active as possible.

 

Geoff Allix  20:58

And on a personal note, do you have any unusual interests or wacky hobbies that you could tell us about?

 

Rebecca Stoner  21:07

Besides posting pictures of everything I eat? I didn’t know something people probably think it’s a bit wacky. I do a bit of fasting as well. I’ve looked into the benefits of fasting and MS and going off medication, I felt like I needed a plan B just to try and keep my autoimmunity in check. So I do a bit of fasting and I use the fasting mimicking diet which is developed by Valter Longo. There’s a lot of science and evidence behind that, that it’s really beneficial. I mean, we didn’t always have a pantry full of food and a fridge full of food. So people at work think I’m nuts, like first of all, you know, I only eat plants. My first day at work, there was a huge blackforest cake and they offered me a piece and I was like oh, sorry, I just don’t eat that. So they thought it was strange to begin with, and then the fasting on top of it, yeah, they think I’m pretty crazy. But you know, the proof is in the pudding, so to speak. I haven’t had any relapses since I was first diagnosed and since I changed my diet, and I get an MRI every six months just to check that there’s nothing going on subclinical inflammation, my neurologist calls it and there’s been no new lesions, and I don’t have any symptoms anymore. So if I do these crazy things and eat a, you know, non standard diet, then it’s obviously being beneficial in some way.

 

Geoff Allix  22:29

And what would you get up to at the weekend?

 

Rebecca Stoner  22:34

Ferrying the kids around from one thing to the other, usually doing a lot of cooking. And yeah, I also have a community that I get together quite regularly, I moderate a Facebook group called Plant Powered Adelaide. There are plant powered groups in lots of countries around the world. But we catch up really regularly and have big shared picnics. And so they’re all whole food plant based, no oils, that sort of eating and yeah, it’s amazing and it’s just such a diverse group of people. But yeah, we all have a similar similar focus. So it’s really nice to catch up with them as well.

 

Geoff Allix  23:10

And finally is their one piece of advice that you could share to people who are new to the OMS program?

 

Rebecca Stoner  23:17

Yeah, so do your research, read as much as you can, use Dr. Google and, you know, as much as our health professionals are educated, and they’re smart, and we need to trust them to look after us. They don’t know everything. You know, medical professionals have had like five minutes of nutrition training in their whole however many years they study. So you know, don’t believe them when they say it’s not going to help you. My neurologist definitely didn’t support and still doesn’t support what I’m doing. Although I’m the one who’s doing probably one of the best out of all of his patients. Yeah, just do your research and, and trying to educate the health professionals to, show them that what you’re doing is benefiting, because the more they know, the more they’ll believe it, and hopefully there’ll be more funding for research.

 

Geoff Allix  24:11

So with that, Rebecca Stoner, thank you for joining us. Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode show notes at overcomingms.org/podcast you’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at [email protected] you can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from The Happy Charitable Trust. If you’d like to support the Overcoming MS charity and help keep our podcast advertising free you can donate online at overcomingms.org/donate. Thank you for your support. Living Well with MS Coffee Break is produced by Overcoming MS, the world’s leading Multiple Sclerosis healthy lifestyle charity. We are here to help inform, support and empower everyone affected by MS. To find out more and subscribe to our E-newsletter, please visit our website at overcomingms.org Thanks again for tuning in and see you next time.