Kickstart 2022 with Overcoming MS

This transcript was created with the support of a volunteer.

Sian Southward  01:12

Hello, and welcome back to an exciting start to 2022. And the beginning of season three in the finding hope with OMS 10th anniversary edition of our webinar series. My name is Sian Southward. And I’m the head of programs here at OMS. And I’m joining you from the UK tonight. In a moment, I shall be handing you over to one of our guest presenters for the evening, who for some, I hope would be a familiar face Grazina Berry, CEO of OMS. But before I do that, I just wanted to run through a bit of housekeeping, again to help the webinar run smoothly. So just to note, as always, the webinar is being recorded. And we will provide you with details at the end of how to access this, we will run for about 60 minutes, which will include a presentation from Grazina and another special guest Sam Josephs, who Grazina will introduce later. And that will be followed by a q&a session. So, you’ll notice that because this is a zoom webinar, there isn’t an audio or video component for webinar participants, but it is interactive. And you will be able to pose questions at the q&a function at the bottom of your screen. And given the size of our audience and the time that we’ve got, we possibly won’t get through all the questions tonight. But what we will do is callate, the sort of top 10 FAQs and they will be available on the presentation sorry, on the website with all the other materials. If you do experience any technical glitches, I suggest just sort of logging in and logging back, logging out and logging back in. And we also recommend that you use a Chrome browser to access the webinar. We’ve tried to make the webinar  as accessible as possible. So there are closed captions like subtitles at the bottom of your screen. And you can actually turn those off, there’s a button at the bottom where you can say turn those off, if you so wish. And also as you exit the webinar, the short pop up survey will appear. And that really helps if you can give us any feedback and how we can improve going forward or even better ideas for future content. And as I said, you will also automatically be sent a link this week with the basic signposts in you to the replay of the webinar session as well as the PowerPoint, any other supporting materials and of course, our past webinars. So without further ado, I’d like to welcome Grizina onto the stage. Joining us this evening.

 

Grazina Berry  04:05

Hello, Sian. And hi, everyone.

 

Sian Southward  04:08

Hi Grizina, how are you feeling?

 

Grazina Berry  04:10

I’m great. I’ve got my chamomile tea next to me. So that’s always a good sign. And I’m ready to go and you know Sian, when I was sort of rehearsing in my head, how to say hello to people when I say Hi, everyone, I was hoping we’ll have lots of people joining which I hope is the case. But you never know when you change your webinar content a little bit. It’s a bit of a risk, isn’t it? You just don’t know how many people you’re gonna get.

 

Sian Southward  04:38

Well I can see that we’ve got quite a few people that have joined us. So yeah, I think it’s going to be a good a good evening and a great start to 2022. So I shall, I’m sure nobody wants to hear anything more from me. So I will pass the floor to you and I will be back later to help field some of those questions hopefully that we get coming through. So good luck. And thank you.

 

Grazina Berry  05:03

Thanks very much Sian and see you in a bit. I’m just going to try and share my screen. So we have the presentation nice and ready, which I’m hoping you’ll find nice and informative. So some of you will know who I am, you will have heard me speak in a recent podcast or have seen me in a previous webinar. So I’m hoping that I’m a familiar face and familiar name, I’m the Chief Exec of Overcoming MS, the organization that we all love and are really passionate about. And in this webinar that is a little bit different to what we are used to I’m joined by Sam Josephs, a very special guest. Sam is an ardent OMSer, a supporter of our organization, and nutritional expert and a carer for her husband, Danny who lives with MS. So in a little while, I will invite Sam to join us. And behind the scenes, we’re quite fortunate to be joined by another colleague who won’t be appearing. But I think she’s worth a mention. She’s Christie. She’s new to our team. She’s our digital engagement manager, and a real expert on our website, building our resources, producing really engaging social media content that I’m hoping you enjoy seeing. And she works alongside Vicky and Sophie in the team. So let’s make a start. Today’s session is slightly different, as I said, but also really, really important because I’m so conscious that we sort of hit especially in the latest in the last year, the last two years, we’ve been hiding behind screens a little bit, we’ve been doing a lot of work behind the scenes, we’ve all been affected by the pandemic, organizations, communities, individuals alike, and we’ve all had to adjust. So we’ve been working quite hard in terms of getting closer to our community that we’re here to serve. And we asked our community for lots of feedback. Last year, a lot of you responded. So it felt really opportune and important for us to be really open about what’s in store in 2022. To talk a little bit about the community engagement survey that a lot of you participated in sharing some of those results that have helped shape our plans. So we’d really like to share with you our top priorities. But I didn’t want to just speak about what’s in store. And on offer brought to you by our team and our charity, I also wanted to make sure that you joined the webinar and came away with something quite practical and useful. So some top tips to help you with the OMS program, whether you’re new to it, or you’ve been following it for some time. So bit of a refresh. And hopefully we’ll also have some time  for a nice conversation between yourselves, Sam and myself. So 2022  is a really big year for us. And for those of you who did have a chance to listen to the podcast that I recorded with Geoff a little while ago, 2022 will be marked by celebration, it’s our 10th anniversary year. And through this year, we will of course be introducing some interesting and hopefully useful resources and different types of events, we’ll be engaging with you much more and unveiling some exciting announcements. So that’s an important feature this year. That is really important to mention upfront. But fundamentally, what is at the very base of our plans this year and into the future is our vision and our values. We are all united in our small but mighty team behind the vision that every person with MS feels empowered to take control of their health, is making informed lifestyle choices and is leading a full and healthy life. So that’s what drives us. That’s what gets us out of bed every morning. And linked to that what’s really important is how we do our work. And that is our values. We are a values driven organization just like all the charities and we’re really proud of those values. So they’re worth a mention. Being evidence based. Of course we’re very proud of the OMS program that we exist to champion. And it’s robust and varied evidence base built on 1000s of research pieces, originally led by Professor George Jelinek, and of course, the work of the neuro epidemiology unit at University of Melbourne. We’re also inclusive and this value is, is a value that we introduced actually fairly recently. Just because we introduced it recently doesn’t mean we haven’t really followed it. But we wanted to be much more upfront and open about it. Because inclusion is really important to us as an organization to us, as a team, to us as a community. And that means that we are open to all experiences of MS and Overcoming MS. And I think that’s important to emphasize that we’re also community focused, that everything we do, decisions we make, how we recruit people to the team, really is led by the community and your needs. And one of the things I’m really proud of that actually, we don’t recruit a single member of the team without having an OMSer on the interview panel, because it’s really important. And we’re also very proud to have people with lived experience as part of the team. Another important value is about empowerment. And empowerment is really a fundamental principle of the Overcoming MS program and everything that we do, and that we enable people to take control of your illness. So you’re not a person who carries a diagnosis, you are empowered to make informed choices. And that’s really important for us. We’re also dynamic as an organization. That’s important for organizations like ours that are fairly small, but ambitious. And being dynamic means that we are able to be nimble on our feet, pivot as the world around us changes. And we really demonstrated that over the last two years, by investing quite heavily into digital technology, giving people information across different media so that our reach could remain broad. And the final value that is also very close to my heart alongside inclusion and empowerment is collaborative. We are an organization that wants and needs to work with others, be it our community, our partners, other organizations, that work with people with MS and importantly healthcare professionals. So alongside our vision and values, what also shaped our plans is our achievements in 2021. And we’ll spend a little bit of time reflecting on those things that we’re really proud of and can celebrate. We’ll be honest about what didn’t go so well. And what do we learn from that, we’ll look at our survey results and talk a little bit about the context for our work. So things that we’re really proud of, is the fact that whilst the world around us was and continues in some ways to be in turmoil. And whilst we were working really hard to make some internal facing organizational improvements, we actually expanded our reach we grew our community, whom we’re now informing, supporting and empowering to nearly 25,000 people living with MS. And that’s from around 19,000, a year and a half ago. So that’s a really significant achievement. That’s more people, hearing about our work hearing about the program and beginning to interact with us and the program. We’re very proud and I know Sian is very proud. And we’re proud as a team that the the new webinar program that we launched last year was attended by nearly 1000 people from a lot of countries, 36 countries, and 94% of attendees rated the content very highly. And of course, the content was informed by our community. So I’m pleased that people actually reflected that in their ratings. We had a webinar focused on progressive ms led by Professor Helen Rees Leahy and Phil Startin, we focused on women knowing that more women are diagnosed with MS and living with this condition. We also spent some time with Dr. Jonathan White and others exploring nutrition, program development areas and other things. We also have 94 circles now.

 

Grazina Berry  14:48

Two of which are focused on specific themes. One of them again, I’m really pleased to say it’s focused on supporting people with progressive MS. And we have 100 Ambassadors, which is a really great big achievement, we just have to really support them very well. Living well with MS podcast has also entered season four, which is a cause for celebration. And I believe the latest stats tell us that we have around the globe 850,000 Live podcasts, which is a massive number. And someone heard on radio four very recently that one in 10 people this year will plan to launch their own podcast. So the market for podcasts is hugely crowded, and Living Well with MS podcast is in the top 20 of all of those. So again, there’s an amazing achievement, and one that Alex Twersky in our team, and Geoff Allix an OMSer can be very proud of. I’m also pleased to say that our governance is really strong, governance is critical to charitable organizations and any organizations but charities in particular, because we are quite heavily regulated, and rightly so. We have welcomed on board, fantastic new trustees and a new chair. So for trustees, we’ve grown the Board of Trustees, two fold within a year, which is a huge achievement, and I think bodes incredibly well for the organization because alongside really strong founding trustees, we have managed to attract people with lived experience, people who believe in advocacy and empowerment. We’ve managed to attract Dr. Aaron Boster, a key neurologist in the US and of course Dowshan Humzah  the latest addition, our new chair, and really importantly, promising engagement with healthcare professionals in 2021. We’ve managed to, to find our way and present to national health care trusts here in the UK, we’ve managed to work with neurologists and MS nurses on some specific projects, which I’ll mention later on. So some really promising engagements. And I think it’s a key one to mention, because I know that the community when I speak with them, keep asking me, you know, why aren’t we known enough? Why aren’t people recommending us enough? So I want to reassure you that we’re starting to make some really positive steps and developments in this area. Now, this quote, is a really important one. For me, it’s a highlight. It’s, it’s come from someone, an OMSer, who emailed us on the back of sharing our December’s e newsletter. And I want to read this out because it really I think sums up what the organization and what the Overcoming MS program is all about. Strangely, I only found OMS a few months ago, but what a fantastic change you have been to me, it’s been like a light going on. No more negativity, no more downward spiral, I now feel so much more positive about the future, and somewhat in charge of my direction. I think this is really powerful. And it was so lovely when we shared it within the team and our Board of Trustees. Because this kind of strong, strong sense of hope and positivity, as well as empowerment and being in control of your illness and your life are really important to the work that we do every day. And now the survey, I’m incredibly grateful to nearly 1400 people in our community who actually took quite a lot of time to respond in depth to 61 questions that we asked. And when developing the survey where Sian whom, you know, also played a really important part. We were sort of um-ing and ah-ing on how many questions we should include, which areas should we explore? And because we’ve never done this survey before, we thought, well, let’s let’s take a risk. Let’s ask a lot of questions, see what we get. Because we really need to know how people feel about their MS diagnosis, living with it, how they feel about the program itself. What can we do better and more of as a charity, what barriers people might face in their daily lives as they look to change and improve their diet as they try and find time to meditate? And also how people engage with health care professionals. So we decided to go out and I’m really pleased to say that 1400 people that responded took the time and so we are taking the time to thank you for participating in the survey and sharing some of those results,  that will be shaping our plans in the future. So here are some of those numbers. And I think it’s, it’s really key to say that to numbers sort of always roll things up, don’t they, they roll up experience into a summary picture. And of course, a summary picture hides individuals and their experiences. So alongside these numbers, we’ve delved deeply into everybody’s comments across all of the areas so that we could really understand what people are trying to say to us, which we can then reflect into the work that we do every day. 80% of people who participated in the survey are female, 20% male. And this is interesting, actually, because if we look at ms global statistics, we know that about 69% of people diagnosed with MS are women, and about 30% are male. So we’re slightly more biased. We’ve got more women within our community, women perhaps are generally more inclined to be willing to change their lifestyle, I don’t know. But it’s a really interesting, interesting statistic. We also know that over 50% of our community, represented in the survey are aged between 45 and 64 years old. Put that against the general numbers that tell us that people will tend to be diagnosed with multiple sclerosis in the most productive years of their life between 20 and 40. This makes for an interesting number for us. We also now know thanks to the survey that 62% of people we support, inform and empower, are living with relapsing remitting MS, the most common type, but over 30% of people are living with progressive types of MS. And that’s you know, that’s a really interesting and important number for us to think about. Because we have to really, really work hard to make sure that we support people with progressive forms of MS better perhaps historically, we have said that the program, the Overcoming MS program is the most impactful the earlier you adopted upon your diagnosis. And if you’re if you’re living with relapsing remitting, and you adopt the program early,  you stand a better chance of living a full and healthy life. But we also know that people with progressive MS following the OMS program are also leading full and healthy lives. So we’re here for everyone. Again, this talks very much to our value of inclusion and empowerment. About a third of our community had been diagnosed fairly recently. And that we know that fatigue is the most common symptom that people are reporting, followed by loss of balance and mobility issues. No big surprises there. But important for us to make sure that our support and information materials, and perhaps research helps address or explores some of these most common reported issues and symptoms. So we know that actually, we do need to think about people within our community that we support who are older, we need to think about how they like to engage with us with our information support resources, we need to make sure that people really are aware of what resources we actually have. And make sure that people who are new to the program are welcomed and informed in the way that draws them in and we keep supporting them towards full adoption of the program. Importantly, family and friends, we haven’t actually developed many resources yet that are focused on carers, and that’s something we really need to look at and explore a bit more. Very positively, around 80% of people who participated in the survey are likely to recommend the program to others. That Friends and Family Test is frequently used to evaluate the quality of services. And we think this is really really positive number, of course with more room for us to improve as we widen our reach and deepen our impact.

 

Grazina Berry  24:42

Perhaps unsurprisingly, finding time for meditation was reported to us as one of the biggest challenges overall in following the OMS program. And it was a big challenge because people struggled to find the time for it, to build meditation into the daily life. And so the advice we’re giving is that actually stress management, improving your mental well being in different ways in the ways that work for you, perhaps is a good starting point, you could have a mindful walk, you could move in the way that really works for you, you could exercise, if physical activity is something that you, you try and adhere to quite a lot. And because physical and mental health is so closely interlinked, stress management can be achieved in many different ways, not just through meditation. OMS diet was reported to us as a challenge by some 20% of the people who participated in the survey. And interestingly, it was a challenge, because people found it difficult to fit with family choices. And this is something that Sam will explore later on sharing her own personal experience of caring for a loved one with ms. We dived a little bit deeper into this area, in terms of what parts of the program people were finding most challenging. And we found some interesting geographical variations in that, when we looked at the US, respondents of whom we had about 16%. So 1400, overall 16% were from the US, for them, exercise and movement were more challenging. But if we look at the UK, respondents of whom we had about 40%, diet was more of a challenge. So it just goes to show these numbers can really sort of hide very interesting different variations that we need to try and get closer to being an organization that has quite a wide geographical, national reach, international reach. The voice of our community is important, because you’ve also told us not as well, we’re good and things that we’re proud of, but actually that we haven’t done enough to support you. So when we asked the question about how well you’d rate the support that we provide, just over half, said that support you received was okay, but was at three out of five or below. So there is room for improvement for us. People also expressed a willingness for more face to face interactions. You know, digital fatigue is something that we’re all experiencing. And so this is completely understandable, because building connections with others, building communities, providing peer to peer support is best when doing so face to face. 76% of people participating in our questionnaire, had contact with a neurologist in the past 12 months, which is actually not bad. Because in some other neurological condition areas or other illness areas, we all heard about massive waiting lists, people have really struggled to see their neurologist, and out of the 76%, a lot of people would have had contact with their clinician and neurologist via digital or telephone means. And a number that is important for us as an organization. And as we look to the future is that in a lot of cases, people do not discuss healthy lifestyle with that condition, leaving us a lot of room for improvement. And of course, one of our key audiences in 2022 and in the future, moving forward is really building ways to work better with healthcare professionals. So that we shift this number. And of course, we would really like that, we would really like it that more people hear about Overcoming MS at the point of diagnosis from their clinician. So what will be those top priorities for us in 2022. And this is just a summary sort of the tip of the iceberg. So when we look at our goal areas, those organizational objectives of informed support, empower and collaborate. We do need to update and expand information resources, knowing that we have quite a lot of people in our community who are fairly new to the program. We need to make sure that that information is is really useful for them and information resources that are accessible. So there’ll be a lot of work being done by Christie, Sophie and Vicki in the digital team to make sure that it’s this information that we have is up to date, it is relevant, it is easy to find and it’s accessible. Support is also really important for us into this year 2022. And moving forward. And this is really about growing our community support and inclusion. And I don’t mean just the online circles, it’s the broader community. Because we know that the needs of our community are diverse, they’re changing all the time, and we have to be able to be more responsive with what support we offer and make sure that support goes deeper. Empowerment is all about enabling people with MS and OMSers to really boost their voice as they interact with one another, with their families, with their carers, within the community. And also, we need to try and empower them in such a way that they are confident enough to talk about healthy lifestyle with their health care professionals. So empowerment at individual level, community level, but also in the way that we work with healthcare professionals. And it’s not just all in the, in the in the court of people with MS championing us, I think that’s really important. But it’s us as an organization, finding a way to work more closely with healthcare professionals across different geographies. Inform them about what we do, how we do it, so they could be prepared to inform people who are being diagnosed about this powerful program that we champion. And collaboration, this is an exciting development in 2022 that we’re planning, we want to develop and test a new type of interaction, a new type of engaging and supportive event for people with MS that will combine digital technology, digital information, education and support with a face to face interaction. So we want to take what was best about retreats that will be known to some of you in the community who have been longest standing adopters of the program. So we want to take what’s best would work the most and sort of reshape it so that it becomes a much more accessible model of support. But also one that we could then go to healthcare professionals, go to get health care systems and, and sell sell it to them. We would like to be commissioned by healthcare to deliver this this new way of interacting and working with people.

 

Grazina Berry  32:38

These are the plans, best laid plans. We all know what people say about that. But I want to say that our plans are ambitious. And I think that’s really important because people with MS and OMSers in our community, you deserve what’s best, you deserve ambition on your behalf. And so my team might not be particularly pleased as as to how much how much work we plan to do, because there is a lot and it does stretch us all. But it is important to have plans. It’s important that those plans are driven and led by our community needs and expectations. But there’s no certainty because the world around us is really tricky. We know that the aftershocks of the pandemic will continue to be felt for some time. We know that a lot of people in our community will be struggling because the the cost of living has increased. We were talking a lot about increasing energy prices. We also talk a lot about the complex socio economic circumstances in which people, families, communities will be finding themselves. I was reading a report today issued by the Joseph Roundtree Foundation in the UK that explored poverty in the UK. And you know, a really shocking number was that one in five in this country are living in poverty. If we looked at the US out of a population of over 300 million, over 37 million are living in poverty. So we know there is an issue. And so it’s important for us as an organization to make sure that we are as accessible as possible to everyone in the community, and especially people who need us the most who might not have the means to access healthy lifestyle readily because of their ethnicity, because of their housing status or employment status. So there is no certainty. There is effort, there is ambition and there is certainly adventure. I think we have to be prepared for some unexpected to happen in 2022 and embrace it and respond to it in the best way that we can. And now this is the time that we come to Sam. So Sam, I hope you’re ready, ready in the wings. I’ll be with you so that I can sort of click the slider forward, if you just give me a little nod, but over to you to take people through some very practical, and hopefully useful tips and snippets of advice, as they look to adopt the OMS program.

 

Sam Josephs  35:22

Thank you. Thank you Grazina, and thank you for having me this evening. And hello to everybody who’s joining us either now or in a recording. Some great insights about what’s going on behind the scenes at Overcoming MS and look forward to seeing how it’s all going to unfold in this year, in the coming years. But right now, we’re going to talk about a few top tips for those of you that are wanting to start the new year, getting back on track, maybe after a lapse over Christmas, or people who are new to the program. And they’re kind of quite general tips that we might want to implement when we’re taking on any new intentions or new year resolutions. But what’s really important with the Overcoming MS program is to remember that it is a lifestyle change for life. And I like to say slowly, slowly wins the race. So this is about starting with new habits in a very small way. And building on that, because you’re going to be on this program for the rest of your life. It doesn’t matter if you fall off occasionally, as long as you just get back on. It’s not a sprint, it’s much better to think of it as a marathon. And when I’m explaining to clients in my practice about maybe giving up dairy, which isn’t something that they had thought about before their diagnosis. Sometimes they’re reluctant to cut out such a big food group. And so I ask them to just slowly think about making small changes, perhaps just switching out milk in tea or coffee for plant based milk. And then building on that, slowly cutting down things like cheese, and other dairy foods, until you get to the point where you’re checking food labels, and can actually say that you are 100% dairy free moving forward. So the next idea is to be specific. So clearly identify those areas where you struggle and where you want to see change, and nail it down to be specific. And this could be something as simple as just remembering to take a vitamin D supplement every day, maybe just recognize that you’re often forgetting it. So maybe put it somewhere more visible in the kitchen, right by the kettle to help with breakfast in the morning. Or it could be something like with meditation, which I know many of you struggle with implementing meditation, I had a client who really she said to me, she really wanted to be the kind of person who meditates but just couldn’t fit it into a very busy work and life schedule. And so instead of trying to implement that 30 minutes every day that we know is recommended on the program. We just started with 10 minutes once a week on a Monday morning. And the next time we met, she was absolutely thrilled. She said she could now think of herself as someone who meditates, she’d managed to increase her Monday morning meditation to more like 15 or 20 minutes. And she’d also managed to increase the frequency as well. So building on things and being specific, and also setting those goals, making them realistic, making them motivating, don’t decide that you’re suddenly going to be the person that does 10k runs regularly. If running isn’t your thing. It might be that you know swimming or partnering up with a buddy to go to the gym and do classes are more your thing. It might be that meditation is very difficult for you when you’re alone in a room at home. In the morning when your mind is busy thinking about the struggles that you might have to face during the day. Maybe think about changing the meditation time doing it later in the day, or even the area where you do it maybe outside of the home sitting in nature on a park bench taking a few minutes so so think about goals that are realistic and things that you can actually enjoy. Okay, next slide. Okay, planning the week so this is something that kind of revelation to myself and is actually one of my own intentions starting the year. So specifically it involves diarising your week beyond the kind of work schedules and meetings or social appointments that you have. But actually planning, the best times to fit in some batch cooking. Maybe to fit in when the laundry happens when the food shopping happens, when would be good 10 minute window to grab some time for a meditation, being able to see in your plan of your week, where those busy times are, which could be a weak spot, and being able to be flexible. So thinking, well, maybe I’ve got time on Sunday, I could make an extra batch of soup. And that could be dinner on the night, when I’ve got the PTA meeting, or I’m running around, picking the kids up from after school clubs. And that, you know, I’m always really stressed out and tired on a Wednesday. And that’s a weak spot for me. So planning the whole week and laying it out before you can really help keep things on track. And even making it visible as well sticking something quite simple on the fridge might encourage other family members to remind you as well about the things that they’ve got going on that impact on you and your time and how you’re going to manage it throughout the week. I’ve got a fantastic client who suffers with quite a lot of cog fog, so cognitive issues with her MS. And she has the most amazing array of spreadsheets that help her diarize when she’s batch cooking, when she’s got a cheap meal in the freezer, and all those kinds of things. So a real inspiration in that area. And then finally, don’t do these things alone. And this is this is something that I’ve seen with some clients who have chosen not to share their diagnosis, perhaps with family members, or colleagues or even people that they share their living space with. And it can be quite difficult when you when you share the diagnosis with people and you share what you’re doing the program. And you actually inform them and educate them on how the OMS program is addressing your condition and providing you with the tools to manage symptoms and long term progression people are much more likely to support you. So I’ve heard of people who at work have been bought in a lovely plate of mixed fruit when it’s somebody’s birthday at work and the rest of the office have been given a slice of birthday cake, for example. So it’s really lovely to have people on board and to really share how the OMS program can really support you moving forward. And again, using the resources that the charity offer is an amazing way to sort of feel that support feel that you’ve got a pool of information to share and reach out to other people on a similar journey. Find your circle, find your ambassador, engage with the WhatsApp groups or the Facebook groups. There are some great hashtags on Instagram sharing OMS friendly recipes. Again, getting support when it comes to things like exercise or meditation, doing it with someone can be really helpful, using the podcasts and webinars and things that Overcoming MS published as well. But most of all, we’ve got to remember, this is the long game, this is something that you’re on for the rest of your life. So being positive, staying positive, being kind to yourself. And when you’re feeling a little bit more challenged, just focus on the benefits that the program can bring. And really, really believe in the power of how looking after yourself in the OMS way can really have an impact on your quality of life, on your emotional well being. And even your prognosis with the condition as well.

 

Sam Josephs  44:07

So as you pointed out Grazina,  that there is more than 20% of people on the OMS program say that the OMS diet is one of the areas where they really struggle. And this seems like a real shame to me. And I sort of contemplated this for quite a while about how when. And I certainly felt it when Danny was diagnosed. And we started changing his diet. And we were explaining to people what we were doing if people were inviting us for dinner about not eating this and preferring to eat something else instead. And people initially were kind of like, well, why would you deprive yourself? And I think that’s kind of what we think of when we think of the word diet. So the OMS diet talks about that daily intake of food that we have that’s one meaning of the word diet. At what we eat in a day. But because the word diet is also associated with that abstinence from food being on a diet, for example, for weight loss, I think in that way, it’s sometimes has this very negative connotations for people. And I’m really interested in the power of language. And I’m wondering if we change the word diet, and we think instead the word nourishment, because essentially what the OMS diet is doing is actually nourishing our nervous system, all our cells in the body, but specifically providing nourishment for the nerve cells to operate sufficiently effectively. For to bring that nourishment into the body that can help dampen inflammation that can help prevent degeneration as well, then I think thinking of things from a nourishment perspective, can bring a huge amount of positivity, where some people might feel that there’s restriction and an element of negativity. So, next slide. So rather than me talk to you about some dietary hacks, I thought we could think about some nourishing hacks. And when I talk to my clients who are perhaps newly diagnosed or new to the program, rather than talking to them about cutting out this cutting out that and I like to say to them, how about switching things. So it’s less about taking out it’s more about alternatives. And it’s more about bringing things to the diet. So we could think about switching, for example, from the white, refined bread, rice, flour, pasta products, to the brown versions, because these brown whole grain versions are so much more nourishing. The white versions are more metabolically similar for our body to something like table sugar, whereas the brown versions are much more nourishing because they contain fiber. They contain protein, but they also contain B vitamins for nervous system health as well as minerals like zinc for immune system health. So those are some simple hacks, just switching certain foods when you’re in the supermarket. Switching oils, so switching the sunflower and the vegetable oils for the extra virgin olive oil. Instead of putting butter on toast, we switch and use a little drizzle of flaxseed oil, which still brings that same sensation when you’re eating toast with its regular toppings on it. Switching out some of the proteins that we get from land animals more for animals from the sea, the fish and the seafood. So you know, prime example last night a stir fry. And instead of it being a chicken or a beef stir fry, we just had prawn stir fry, you know, the family is still eating the foods that they’re very familiar with. So as well as switching I talked about adding as well because, and also that it was really interesting. A study that was done by an Australian team actually looking at quality of diet on depression. And they found that it was more important. The quantity of the nourishing foods rather than the amount of the unhealthful foods is when we have such a huge amount of unhealthful foods in our diet that they get in the way of us having room for a huge amount of good healthful foods. So talking about adding extra portions of colorful and varied veggies, I always say to my clients if you’re having something like a nice veggie curry for dinner with some brown rice or something, put an extra portion of steamed greens on the side as well. Looks fabulous on the plate, and also you’re increasing those veggies. And when I talk about varying the veggies, there are ways that we can get around this without actually sort of branching out into the weird and wonderful, so a brown onion is actually considered different to a red onion simply because of the color. So the different colors are different antioxidants that work in a different way to control inflammation and support our nerve health. So you can vary your veggies without really veering off the general shopping list too much, for example by just choosing a red cabbage instead of a white cabbage or choosing a green savoy cabbage or choosing an orange melon, instead of a white melon, or choosing a pink grapefruit instead of a yellow grapefruit. All of these different changes are ways to introduce variety. And some people struggle with things like adding the vegetarian proteins in the beans and lentils and things, but easy sort of tricks and hacks when you’re making rice for the family. Sometimes just stir a tin of chickpeas through the rice to make a different type of dish that also introduces the family, perhaps to a different way to eating pulses. Adding lentils into a salad increases the protein, throwing on nuts and sprinkling on seeds, or even just some lovely aromatic herbs can really bring that variety, souping up your morning porridge by adding different colored berries and walnuts and things can be a really good way to add that variety. And rather than kind of thinking about cutting out this and cutting out that, if it’s something that makes you worried makes you panic, and it’s something you feel you need to work up to then I recommend reducing the frequency of things. Some people struggle, for example, to give up chicken, it’s a very versatile food that people are kind of used to having quite frequently in the diet. So I suggest to people just reducing the portion size. Instead of a whole chicken breast at dinner time. How about just using two chicken breasts to feed a family of five and chopping it into a curry with lots of veggies or a stew or something? Or how about reducing the frequency of meat based meals by having meat free Monday and introducing the children to the idea of a plant based diet more often. Reducing highly processed foods by maybe batch making soup, soups, sauces, marinades, all of those foods, throwing stuff into a blender whizzing it up and keeping it in the freezer and reducing the amount of highly processed foods.

 

Sam Josephs  52:13

And then to just share with you some of my tricks, which basically my tips which basically involve lying and tricking my children. So it was kind of easy in the beginning, Danny would finish work late the children would be eating earlier, I was the one stuck in the middle and making two different sets of meals for people. As they got older, I had to find more inventive ways to try and encourage everybody to eat the same meal. So that could have been something like a tray bake, with maybe some chicken slices for the kids and some mackrel for us. But essentially a lot of the food prep involved just the one meal. But my son grew up thinking that he never ate fish and was horrified later on to discover that for years I’ve been switching what he thought he was eating, chicken goujons for oven baked cod goujons. So I managed to trick him in that way. The first time I switched the bolognese and I use the soy mince, the kids were like, well, this tastes different. And I was like, oh, yes, it does, but isn’t it delicious? I kept enthusing about it and telling them how yummy it was. And making excuses about oh, it was a different butcher or the supermarket didn’t have that. So I don’t have it this time, but just eat it tonight. And we won’t have it again. And of course we did. Switching out plant based milks and yogurts really easy switch to do that kids don’t notice too much. But yeah, just kind of tricking them and lying to them, I have to say, worked to the point where my fairly carnivorous daughter was fist pumping the air yesterday when I told her that we were having tofu miso soup for dinner. And last night when we had prawn stir fry, and she looked at me and said, but you know, I don’t like baby corn. I said I know. But I like it. So I put it in stir fry. So can you just eat it, you know, don’t eat it if you don’t want to. And she said, well, no, I will eat it, it’s just I don’t like it very much. And I just thought that was a great progression from kind of picking things out and leaving it to actually accepting and moving on with it. So I hope that that’s given you a little bit of insight and a few practical examples of how to offer some tips. It’s not leaving us a lot of time for q&a.

 

Grazina Berry  54:58

I was going to say, I was sort of being nudged by Sian in the background and just trying to find and failed miserably a subtle way. So we’re gonna have to find a way to answer people’s questions. Having talked as that’s my fault we having talked far too much. Sorry about that.

 

Sian Southward  55:18

No, absolutely not. In fact, we were worried at one point, Christy and I, because we didn’t know if the q&a was working properly. But oh, as it is, and we have had questions come through. So thank you both very much. But let’s move swiftly on. Because we’ve got a few minutes left. So just starting with yourself, Sam, that’s okay. What advice would you give somebody whose partner or family member has recently been diagnosed with MS.

 

Sam Josephs  55:51

Just knowledge, get the knowledge, equip yourself with as much knowledge as you can. And I think one of the things that can happen when we’re faced with quite a scary diagnosis, and I do see this quite a lot with my clients who come to me they might be brought in by a family member. Rather than sort of actively engaging is, don’t shut down and shut out the information. Because you’re afraid of what you might find. What you will find, will be so reassuring, so enlightening, and so empowering, that really get as much information as you can, and then share it as well as much as you can. So I think knowledge, and don’t be afraid of the knowledge.

 

Sian Southward  56:38

Knowledge is power. Yeah. So Grazina, one for you, posted from Helen, how can we do better to reach the people with MS who need us most? And maybe the least likely to find us perhaps due to their life circumstances?

 

Grazina Berry  56:58

It is such a good question, Helen I’m really pleased you’ve asked it of us. And I’m not sure I have the answer that will, will please you very much. But we know that our community is really quite privileged. Actually, we know that our community is predominantly white, 91% of OMSers are white. But we know also looking at data, having explored it quite closely with colleagues at the MS Academy, when we delve deeper into four areas in England, looking at the most deprived, we knew that people with MS living in those areas, in quite difficult circumstances, they were most likely to experience additional problems, challenges, other conditions. So I think one of the ways that we will be able to move forward this year is by partnering, getting closer to healthcare professionals, getting access to better data and physically going to those areas where we have existing infrastructure, we have existing circles, we will look to start reaching out to organizations that work in those areas, we’ll be looking to knock on the doors of new integrated care systems, to offer our new way to engage with people and saying, you know, we know you’ve got this specific problem in your area, we have a solution, we have a practical framework that will help relieve the pressure of you and will help those people who need us the most. I think, because we’re small, we will be starting quite small. We will pilot we will try it, we’ll learn and then we’ll look to scale and grow it. So I hope it answers your question Helen, in some ways, but I know we need to build a much better understanding of how we can reach those who are really, really harder, harder to reach.

 

Sian Southward  58:54

Not really, for anybody in particular, I guess, but it’s around and it’s a nice segue actually into MS nurses. Somebody’s asking, sorry, Naomi’s asking how best do I find one. She’s saying that support and advice on this hasn’t been provided to her since her diagnosis a few years ago. So she’s looking for some guidance there.

 

Sam Josephs  59:20

Her neurologist should be able to signpost her. I would think is that the neurologists that signpost you to and allocates you the MS nurse that’s quite mad that she’s been diagnosed a while ago and not yet been given an MS nurse. She should definitely get in touch with the neurologist directly on that and bring that to their attention. It’s probably an administrative oversight, I would have thought.

 

Grazina Berry  59:42

That’s a really good thought. Sam. And just to add to that, another organization that we work with actually closely, MS Trust have got a really helpful tool on their website that helps you locate local MS nurses, so depending on where you’re from Naomi, if you live in England, actually MS Trust website might be able to offer you a practical tool to locate services that are that are closer to you. And I don’t know for sure, but they might even have contact details, enabling you to reach out. So it’s worth trying different avenues.

 

Sian Southward  1:00:21

Thank you. Sam, this is definitely a question for you. You’ve mentioned stir fry a couple of times. I love them. But can you advise how to do it without oil, please?

 

Sam Josephs  1:00:33

 Yeah. So last night, I took some soy sauce, ginger, lemongrass, garlic, sweet chili sauce, water, and I blitzed it all up, and then a chucked it in the frying pan. And then I did my vegetables in that. So there was no oil went in at all. It was just the yummy flavors. And actually, you can just improvise and throw in whatever you like, at all, you know, it works really well. And you actually all you’re doing is really kind of blasting and softening the vegetables not too much because you want them a bit crispy. And then throw the prawns in and I threw some cashew nuts on top as well.

 

Sian Southward  1:01:14

Great. And just staying with you, Sam something Becca here, sorry, has said, I’ve cut out all dairy. How do I get enough calcium?

 

Sam Josephs  1:01:23

Okay, that’s a great question. Because we’re led to believe that dairy is our only source of calcium. And that’s just not true, dark green leafy vegetables, nuts, beans, lentils, all those foods are rich sources of calcium that actually studies show are even more bioavailable, so even more readily absorbed than calcium from dairy. And because you’re getting plenty of vitamin D. And because your diet will be reasonably low in animal protein as well, which can sometimes cause the excretion of calcium. Your calcium levels should be absolutely on track. So dairy free diet does not mean calcium deficiency at all. That’s a complete fallacy. There is a huge amounts of communities that are you know, all over Asia, lots of places in Africa where they don’t have any dairy products at all, and they have very strong bones and very low levels of osteoporosis.

 

Sian Southward  1:02:26

Okay, another question probably best for Grazina, I suggest. Where did where would you suggest is the best place to start? So is it reading the book? Is it listen to a podcast, watching a webinar? Or just simply diving into the program? What would you be your best piece of advice on that?

 

Grazina Berry  1:02:52

I think it’s a really good question. And you know, speaking with our community members almost daily, every person has had a different starting points that worked well for them. But there is a theme running through a lot of people I’ve spoken with started with a book. But the book wasn’t for everyone because it is quite, quite hefty. So what we encourage people to do, depending on where they live, is try and reach out, identify and reach out to local circle, a group of people who are like minded who will embrace and welcome you, as someone who wants to explore the OMS program, and will offer you some practical tips. I would also suggest actually listening, choosing some podcasts because within that people will share with you some very some very real life examples of where they’ve tried with the program. I think diet is the one that people will try fairly slowly step by step building up gradually towards but because food is so important, it can be challenging, as we know, but it’s also the one area that is so so important. Because you know reducing your inflammatory foods and boosting those that are anti inflammatory, have those anti inflammatory qualities, and adopting that change in your nutrition, different adopting different nutritional habits will be important. But as Sam said, and Sam, I loved your advice, because it was so ultimately practical. You know, choose something that may seem quite easy, you know, up your vitamin D level, for example, go out for a walk if you can, if not try to move a little bit more in the ways that are possible for you. So we’ve got so many ways that say, you know, speaking with someone could be a really good start for you.

 

Sian Southward  1:04:50

And we’ve had quite a few questions around sort of food poverty and you know, following the OMS program, particularly around the diet on a budget. And I think, you know, rather than taking each question in turn, I think it’s probably worth us just sharing that. Certainly future sessions we’ve talked Sam, haven’t we about maybe doing some sort of live cooking or you know cooking on a budget having the sort of five ingredients, so it fits within those family choices. Because that certainly came out loud and clear from the engagement survey as one of the biggest challenges to following the diet. So just wanted to say that, because we’ve had quite a few comments and questions around it. I think we’ve probably got time for one more question, conscious that we’ve, we’ve overrun. But it’s been great. Yeah, so it’s just going back to actually sharing though the sort of snippets of the engagement survey results, somebody’s asked, would these be available in full to our investors?

 

Grazina Berry  1:06:03

I don’t see why we can’t. I think we’ve run this conversation today. We’ve offered this webinar in the spirit of openness, and willingness to learn and improve. And I think sharing the results with people who’ve given the energy and time to respond is only fair. So I think we absolutely can make those results available, perhaps best via email by electronic means.

 

Sian Southward  1:06:31

Okay, great. Um, just before I sort of close the session, is there anything either of you would like to add that we’ve not covered?

 

Sam Josephs  1:06:42

No, I mean, I would only like to add work to what Grazina was saying about where to start. And I think that the refresh with OMS webinar series that we did last year, if you’re kind of a visual learner, rather than someone who’s, you know, going to be able to pick up a book and wade through a reasonably scientific read, then maybe that’s a nice place to start, because there were lots of different sessions on the different steps of the program that kind of summarize things quite nicely. So the refresh webinar series might be a good place as well for people to start.

 

Grazina Berry  1:07:24

Great, great tip. Thank you, Sam. Just the goodbye comment from me really is to thank everyone for, for tuning in today. And I do hope you found something of interest, about how we shape our plans as an organization, what’s in store, but also something very practical, that Sam kindly shared. And, of course, our information and resource sharing does not stop here. Our website has a wealth of information that you will find quite helpful, I hope in a range of different formats that will hopefully appeal to the different style of you interacting and engaging with information. But please continue to reach out to us. Please continue to come to us. We do want to support you. We exist for that purpose, to help inform, support, empower. So the more you engage with us, the better the more feedback you share with us, the better. So thank you for that. And thank you for for tuning in today and spending a little bit longer with us this evening.

 

Sian Southward  1:08:31

Oh, timing. Grazina’s frozen there. But stay with me, Sam. Yeah, just give me as we close. The closing remarks. I just wanted to thank you both so much for a great session tonight. Grazina’s back, you froze for a little bit there. But we did get what you said. Amazing has not happened before on one of these webinars. But yeah, so just to say thank you both very much. And for those of you attending, we will be back next month with an exciting new session and another topic. And we will definitely be back in March for our regular ask Aaron feature. So that will be in the middle of March. If you want to show your support for Overcoming MS then you can always go onto the website and donate. Or you could volunteer to lead one of these webinars sessions, if you’ve got something you really want to share with other OMSers please do just drop us a line at the email address. And of course you will get a follow up email from us at OMS with all the information linking you back to the replays and past events. And of course keep checking back for our updated FAQs. And if I can do another plea that when you exit if you can fill in that really quick survey just helps us to shape these webinars going forward because it’s all about what you want and what you want to hear about so please do have your say and yeah many thanks for attending and here’s to a great 2022 and hope see to you soon. Thanks very much.

 

Grazina Berry  1:10:13

Bye

 

Sam Josephs  1:10:14

Thanks everyone

1:12  Hope and mental health with special guests.

4:05  MS support and resources with a special guest.

9:00  Overcoming MS organisation’s vision, values, and achievements.

16:05  MS diagnosis, treatment, and support. 

20:48  MS support, resources, and challenges. 

27:30  Improving support for people with MS. 

35:23  Starting the new year with healthy habits and lifestyle changes. 

39:34  Managing MS symptoms through diet and lifestyle changes. 

46:09  Nutritious food swaps for better health. 

51:04  Managing MS diagnosis and reaching those in need. 

56:59  MS support, nurses, and calcium intake.

1:02:52  MS program and nutrition with practical tips. 

1:08:31  Managing multiple sclerosis with Q&A. 

Sam Josephs

Sam believes passionately in diet and lifestyle intervention as a powerful preventative approach to all chronic health conditions. Her husband was diagnosed with Multiple Sclerosis in 2002 which has shaped the direction of her career gives her the compassion and unique hands-on knowledge to support so many others with the condition.

Since graduating from BCNH (UK College of Nutrition and Health) in 2008, Sam has been working in her North London clinic seeing clients on a 1-2-1 basis. She has also worked as a pastoral and clinical tutor for BCNH, and appears annually as a guest lecturer at both BCNH and the Institute of Optimum Nutrition training upcoming nutritional therapy students in a variety of conditions, including MS. She has presented to many MS support groups, was an expert panelist at the MSLife Expo in 2016 and has worked as a retreat facilitator for Overcoming Multiple Sclerosis.

She is a fully qualified Nutritional Therapist, a full member of the British Association for Nutrition and Lifestyle Medicine (BANT) and is also registered with the Complementary and Natural Healthcare Council (CNHC) – the only register for Nutritional Therapy recognized by the Department of Health.

Above all else, Sam enjoys nothing more than a trip to the Farmer’s Market, or a good greengrocer and is a keen and experimental cook for her family and friends.