← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
Highlights from the Living Well Live One day Event | S8E2
01:07:48
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- [00:00]
A
And I was very fortunate to be in a position where I could, you know, use resources around to help to amplify the message and. But at the time, I had no idea how that was going to work out and how to even go about starting a charity. But I just figured one conversation at a time and if I was able to help one person, then that was making the difference. And so now something like today, looking out on a sea of people and knowing there's even more, more people online and how many people around the world that we've touched is really quite, quite incredible. Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter@overcomingms.org Newsletter and now let's meet our guest. Today's episode features interviews conducted at the One Day Live well Live hybrid in person and online event held at the University of Warwick in November 2020. Host Jeff Alex speaks with presenters, Overcoming Ms. Facilitators, other Ms. Charities, and even the president, CEO and chair of the board for the charity. Yes.
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B
So joining me now, we have Linda Bloom and Alex. So firstly, Linda. So you've obviously heavily invested in Oakcoming Ms. So why, what did it give to you? Why is the open programs?
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A
Well, OMS was a game changer for me, completely changed my life. It helped me go from a place of, you know, complete despair, sense of no hope for my future. And it gave me tools and it empowered me with things that I have to do to take control of this condition. And that was 23 years ago. And over that time, through following the lifestyle recommendations that Professor Jelinek had put together has completely transformed my life and I'm leading my best life. I can honestly say that now, 23.
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B
Years later, you've chosen to give back as well, which I think it's an extraordinary thing. And that's something Professor Janet said that he had this sort of secret formula and then he realized it sat on his. You're on a megaphone that's really broadcasted, right? I think that's good. My thing felt passionate enough, passionate about.
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A
And actually I felt that it was negligent for me to have this information that changed my life and not to be able to share that with others. And I was very fortunate to be In a position where I could, you know, use resources around to help to amplify the message and. But at the time, I had no idea how that was going to work out and how to even go about starting a charity. But I just figured one conversation at a time and if I was able to help one person, then that was making a difference. And so now something like today, looking out on a sea of people and knowing there's even more people online and how many people around the world that we've touched is really quite, quite incredible.
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B
And Alex, what did you decide to take the role.
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A
To think question? I think when I was sort of going through the interview process, it is. We talked. I said in my opening presentation from today's event, it's about the community and it's the people that I was meeting as I was going through the interview process and reading the stories online around actually it's the community spirit of the organization. I was talking to someone earlier on who was saying, overcoming Ms. Isn't really a charity, it's a movement. And it is. It's a group of people who are all inspired by the same thing. And that in its turn is very inspiring to me. And I mean, our role is almost as you're saying, it's. Our role is to provide the tools, the information. We sort of wave through all the research and work out what's credible, what's slightly out there, and we don't really want to have anything to do with it. So that we can then present that to people with Ms. So that you can then make your choice around. Yes, I'll have a little bit of that. And that sounds good. Thank you very much. And I think that's how I see our role is sort of putting into practice your vision from when you first set up the charity around how we inspire people. But we're sort of providing the practical advice. You guys then make the choices about what you want to do and what you want to take forward. Practical advice, but also providing the space and different forums for people to be able to come together in community and help and support each other. And we're there to support them, but we're also there to hold a space for people to support each other as well, which I think is really important specifically today.
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B
So there is already those retreats and there's webinars and things. So what's today about? Why have you quite done the one day about.
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A
So today is a bit different, which I'm really excited about, because the conversation, when we initially sort of conceived the Idea of we've not met up as a a big group for about six years. It's a long time since the overcoming Ms. Community all came together and we needed to do something that was relevant for somebody who was diagnosed 20 years ago and who's been following the program for 20 years. And just as useful for I met a couple earlier on who are completely new to overcoming ms, relatively new, newly diagnosed and to come out with an agenda that works for all of that. But also as you say, all of our other events are quite courses which are so good are about how to follow the program. Here are the tools, here are the techniques, here's. Let me explain how the research works today. I'm really excited about because it's about what's new because the research changed a lot. When George Genelec was doing it, he was this only person going right, I've examined all of these bits of research and people were so relieved that there was this one thing that they could look to. Now there are millions of different sources of information and if we can look at, as I was saying before, if we can look at what is new, what's interesting but what's credible and what there is actual validity behind. We're not necessarily saying you should be doing intermittent fasting but to be able to say people are talking about intermittent fasting. This is what we do know, this is what we don't know. That to me I think is then if they've got the right information and I think it's an absolute absence of information that creates worry, it creates anxiety. Am I doing the right thing? Should I be doing this? Is there this new practice today for me is looking at all this new stuff and going this is what we do know. Here's some information about it and I think it's. It's different for overcoming Ms. I'm quite excited about it. Yeah.
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B
I like the way that overcoming Ms. Will adapt as well. So when there is new finding and I know that if you actually found that one of the a core pillar change.
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A
Yeah, absolutely. But it did happen. There was a time that we were recommending fish oils.
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B
Yes.
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A
And then the research shame changed to flaxseed oil.
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B
Yeah, well, it's enough. Yeah. That gives me.
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A
Well in the talk about sleep that was this morning. I mean actually when George was coming out with the program sleep wasn't a thing people were talking about journey that we have come on and you guys as early overcoming Ms. Has been fighting a battle isn't quite the right phrase but you've been determinedly, steadfastly following these belief systems. The fact that all of now this evidence is catching up. But it's great. There's this enormous field of research and evidence that's out there but it wasn't there before. People. The concept of sleep affecting your well being and your health isn't a conversation people really had. Not in a scientific way. It's sort of. It's a given but not in the way we are now. So we have to be having the more outdated conversations.
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B
Okay with that. So thank you, you know, but on personal level made my life better.
- [08:23]
A
Well, and am I allowed to say a massive thank you to you because I was having a conversation with someone yesterday about how amazing you are and your longest standing volunteer. Very grateful for the. Yeah, the amount of time you give us. It's absolutely. I'm so excited to meet you because I've not met you in person. So excited. Brilliant.
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B
World famous round is.
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A
Yeah, absolutely. So that's famous. Definitely famous. And personally a huge appreciation as well Jeff, because the way that you've been able to share our information over so many years has helped so many people. A lot of people have said that no, I'm not interested in this and that but I do listen to the podcast when I'm going for a walk or a job or whatever and so yeah, a huge yes.
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B
Hi Johnny. He's one of the key OMS facilitators. You've just come off break so can you tell us a bit about what you were talking about?
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C
Yeah.
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B
First of all, it's nice to see you again, Jeff. I like that we meet in these situations. Been a long time. Yes. So I was talking about the importance of a healthy lifestyle and lifestyle medicine because really that's often misunderstood, overlooked, not emphasized enough or completely dismissed by traditional healthcare professionals in the Ms. Space. And I was trying to make an argument that, that that can't be done anymore. You cannot, you just simply can't say there is no evidence for the rule of lifestyle when you're living with Ms. Because the amount of evidence continues to expand and is completely overwhelming and very consistent. I, I hope I argued that case strongly. I think most neuro this now I've, I've seen that over the time I've had a message, I guess that 10 years, something there's been a shift, hasn't there? It's shifting. No, it's, it's. I agree. I think it's not controversial that it plays a role. I think that a lot of people because it's not their field. Don't know how you grab hold of it. What is it that you do? How do you advise them? Where do you point people? And I think that's a space where we as an organization and a community can absolutely thrive. If healthcare professionals simply said, listen, I'm not the person who knows about this, but perhaps you need to go to these guys and they might be able to help and guide you. And that's, that's all we ask really, is not to torpedo the idea. Just signpost and send people that way. And we'd be very happy to help, and we're trying to launch those. I am the established medical field. I work as a doctor. It's not us or them, it's us and them working together. You know, there's such clear. One of the documents I was talking about, brain health, Time Matters from last year, it's really clear. It's about advanced therapies and holistic treatment. It's not one or the other, it's both. I really hope that that is a reality for more people soon because I don't think it is often. I think it's very much a still. Right, I'll take this and that's my Ms. Sorted or I don't have to think about it, there's nothing else I need to do. When in fact, we know the best outcomes are when you do engage actively with a community, a way of trying to control it. And then in the second session, you had a group discussion, you were talking a lot about where it's going with research. I would say there's probably never been a more positive outlook. You know, as I said, there's over a thousand medicated clinical trials going on in the field of Ms. Right now around the world. Not all of them will yield positive results, but that in itself is important so we know what doesn't help and what we don't need to use. I think for far too long, it's been always about relapsing, remitting Ms. And the therapies and the drive has been in that direction for people living with progressive forms of Ms. I think they quite rightly could feel left behind by research. I think that's changing. And within. You know, we already have medications for secondary progressive, for primary progressive, but the options are limited. Well, now, I mean, I'm secondary progressive now and I. There was one treatment. Yeah, it didn't work.
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C
Yeah.
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B
Then, yeah, the treatments. Yeah. And that's. So that's, that's all too common a thing. And so that's where things like the BTK inhibitors, the Brutinib drugs, so of which there's two or three now which are so, so close to coming out and results of which like really good and actually best and progressive ones rather than relapsing often massively important. I think the remyelination trials that are going on again especially for progressive ms, they're really important too. So there are lots and lots of positive things and we're also understanding a lot more about, as Phil Stauton was saying about the actual biology, the processes involved in Ms. And as you understand more you can target things and you can find the treatments that work and help. Positive times. Positive times. Yeah. Thanks for joining us. Thank you, Jeff. So joining me now, it's a bit of celebrity in the Ms. World, Lena Nielsen, who did quite well at the Olympics recently. And so firstly, thanks for coming along as a celebrity guest.
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A
No, thank you.
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B
And how is it for someone with Ms. To be training and competing at that sort of level? Because you. This was the. I got in trouble actually recently for saying it was the normal Olympics to a Paralympian. No, you're not competing in the Paralympics, you're competing in the Olympics. So how is SAT to compete at that sort of level when you've got ms?
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A
Yeah, so we do have some Paralympians who compete with Ms. And so we haven't really seen Olympians compete with Ms. And myself and my sister were the first ones. So it was a moment for me to raise awareness about how different it can look so you can have Ms. And present with physical disabilities. And while that is true for some of the. But some of my life it's not all the time. So I have to kind of like educate people on what relapsing and remitting Ms. Looks like. But it's. Yeah, it's, it's. My Ms. I'd say is quite mild. So I'll have, I'd say quite like severe relapses but then at the same time like very long periods of remission, if that makes sense. So I can train in those periods of remission, like I hate to say it as well, like a normal athlete. So yeah, that's kind of how I managed to get to Olympics was, you know. Yeah, my, my type of Ms. Is. Yeah, very, very mild when it comes to. Yeah.
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B
That your like exercise regime helps with Ms. As well. Do you think it's like two way thing that.
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A
Actually I think we hear a lot about neuropathies. Someone in the room just like thought who's training through relapse at the moment. And I said if you're able to do it, that's great. Obviously not point of, you know, destruction, but if you can just train those lymph fly adventure without us to to believe that your brain will find other halfway. If there's a pathway that's kind of getting damaged or there's information in a certain pathway, I think there's something to be said in your body moving so that your brain knows how to rewrite those movements. And I think it's the same in sprinting. It's a full body movement moving, you know, one on one leg at a time. And so like it's your whole body kind of like training to find otherwise I believe. And it is science.
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B
Yeah. And then. And the other thing, so obviously like healthy diet is going to be a given if you're on an Olympic program. Mindfulness is the other thing that is one of the pillars of overcoming Ms. Is that something that you have in in your toolkit as well?
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A
Yeah, 100%. I think mindfulness is huge when it comes to, I guess dealing with any diagnosis and especially with an Ms. Like a very complex diagnosis, you don't really get a prognosis of what your lack will look like after diagnosis. And so it does become you dealing with it on your own, which I just think is part and parcel of Ms. Because it's so individual. So that's where things like journaling can become very important during your journey. I think finding the things that make you happy and energized and find ways that you can cope with relapses, I think it's a very powerful tool. If you cultivate that, that is something that will really help you in the journey with living with Ms. But then also if you face your Ms. Head on and start to understand that journey, I think does take mindfulness to do that. So I think taking a breath, like taking a moment to go, right, I'm going to spend an hour like really connecting to Ms. And connecting to my body and figuring out how things are working and what makes me me. I think that is a whole I'm from this. And I think if you can tap into for that, really help you build your Ms. Diagnosis and then your Ms. Journey as well.
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B
And finally what's for the future. So you got big hopes for is it next year then?
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A
Yes. Every year we have something Godzilla and pink in 24 and in 25 we have the world championships which go very well for me. So next year we've got The Commonwealth Games and our very first European Championships in the uk. So it's going to be a very big summer of sport for athletics and obviously the other sports that we'll see in the Commonwealth game, I think we've got the World cup as well, if I'm not mistaken. But it's a big summer sport. I think people get excited from World cup and then we'll have some of that excitement in the Commonwealth Games.
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B
Okay, well, good luck with the future and thanks for joining us. So joining me now is Tessa. So firstly, can you introduce yourself?
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A
Hi, I'm Tessa Miles. I'm from the Southwest OMS group. I'm one of the ambassadors with you. We definitely know one another very well and I wanted to just come and kind of give a. A little synopsis of what I've got from so far. And overcoming Ms. Is just my family. We have an amazing circle, don't we?
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B
Yeah.
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A
And there's always somebody there. So I'm here on their behalf as well. But I found Lena's taught so inspiring. And the analogy between sport and having Ms. And living with Ms. And the idea of this child that you need to love and look after. And it kind of resonated with me with some other things that I've listened to on Insight Timer, for instance. And there's an anxiety thing that our group's just been doing and it talks about your inner child and caring and how you would care for somebody else if you saw them in stress. But I think the thing that's really come through to me with we just had Q and A session and little bite size is we've talked about resilience and being able to do these things. And the word that's come up to me is preparation. We practice meditation because it prepares our body to be able to cope with stress. We practice our sport and our fitness because it prepares our body. And if we know and listen and understand how our body is working, it prepares us to cope with those things that are thrown at us that are much more difficult.
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B
Being proactive rather than reactive.
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A
Absolutely. Yes. You do still need to. You know, there are situations that are thrown at you that you completely lose it and you lost words. I mean, I had somebody once say to me, are you a retard or something? Because I couldn't get my words out and that stuck with me so badly. But now I almost have, because I've now prepared for this situation. I have odd sentences that are somehow in my head that, ha, ha. When I'm stressed and I can say Hang on a minute. I just need a minute. My brain and my tongue are not, are not in sync. Just give me a second and let me finish and then I'll be ready. And yes, that's from. I was diagnosed in 2009, though I know I've been living with Ms. Or as I now want to say, I don't live with Ms. Ms. Lives with me and that's come from Lena today. I'm not defined and we, we've always said in our group we are not defined by Ms. But I love the idea that she said, you know, I'm not like, you know, it's living with me. And so that experience has helped me prepare and hopefully that preparation I can pass on to others and to share. And this is what's coming out today is these top tips, these tools. So we talk about a toolkit of what we can, we can have with us. Going outside, long exhales, cold. And we've just had a question just now about cold water and I love wild swimming. I'm. I've been doing water aerobics and getting my fitness back because I've also been dealing with a cancer diagnosis. For me, I don't always know whether it's. Is it the cancer? Is it the, is it the ms? What the hell is my body? So I'm trying really carefully to listen and prepare myself for the next step.
- [20:35]
B
Being in a circle with you as well. One of the things, community side of it, I think really important as well. Getting that so you make connection with people and actually I think when we have a get together in a way I'm actually thinking less about Ms. Then, because I'm not. Because we're, we're all on the same journey. I know it's individual for everyone, but when I'm not worried about the food that's served.
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A
No, you're relaxed.
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B
Aren't you worried about.
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A
See one another?
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B
Yeah. So we had to just chat about all sorts. Yeah, it's kind of really relaxing.
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A
And I always say that my best days are when I forget about Ms. And. And they're the sort of days that you do. Yeah, we do talk about stuff and people ask questions and we share some of those toolkits, we share some of that preparation. But yeah, most of the time we just have a good laugh and we eat freely and we enjoy one another's company and that's so good for you, isn't it? And that's what's lovely about being here. I've caught up with some of the people that I was fortunate enough to go on the retreat. But I'm also here with some of our. Our circle and introducing them to one another if they help necessary and learning and meeting new people from new circles. So my family is growing, my preparation is strengthening, my toolkit is bigger and doing that here in person is amazing. But hopefully those of you online are also gaining from that. There's been some little WhatsApp chit chat going on and. Yeah, yeah. And, you know, so. Yeah, so for me, the word today is preparation. Preparing myself for whatever.
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B
Brilliant. So joining me as Rachel Hunter. You've just had a group session, discussion. Start with you. Tell us a bit about what you were talking about.
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A
So we were part of. I was part of the hot topics sort of panel discussion and myself and Yasmin, we were talking about the nervous system. Having a little bit of a to and fro discussion about, you know, the nervous system. As someone living with ms, is it our enemy or could it be our friend? You know? Yeah, it's kind of important in lots of ways, but I think, you know, when we live in ms, we're constantly told, you know, stress is bad for you. You know, it can kind of activate the fight or flight system, which we know is connected to inflammation. And so sometimes we can get a bit afraid, I think, of our own nervous system in lots of respects. So it was a discussion around that, really, and thinking about different ways we can activate the other part of our nervous system, the parasympathetic nervous system.
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B
Yeah.
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A
And how we can sometimes use new technology to give us information about our nervous system as well.
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B
Is it like a smartwatch or something? And is that what would be a takeaway then?
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A
I think it's one of those. Yeah, one of those things like that quite annoyingly comes back to your own preference with tech. You know, some people love tech and they love all that data and information and it can certainly be really helpful. We heard from Lena Nilsson, our Olympian today. She was saying how that information is really helpful for her as a sports person. But on the flip side of that, some people find that it can be quite stressful. All the data, all the information, feeling like you have to get 10,000 steps in. If it's a bad day, that might not be, or even if that's difficult in your working life, that can be challenging. I think it's working out what works for you. But yeah, they can be really useful. Give us lots of really useful information that help us monitor and self manage ms, for sure. But it's, you know, you don't want to stress yourself out either. Find, find a happy medium.
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B
Yeah.
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A
And what's.
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B
What are some of the key changes that you found in the last few years in the field of ms?
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A
I mean, particularly in relation to self management? I think that's just such a more understanding in the Ms. Community of just how much we can do in managing our condition. Certainly when I talk to people who are newly diagnosed, I really talk a lot about, okay, engaging with your Ms. Team and your medical professionals who are supporting you. They will work really hard to keep you up to date on new treatments because new treatments coming out all the time. So have your medical team, have your personal team as well who are supporting you. But yeah, find out the information, make yourself the expert in what works for you. The information that's coming out. Yeah, it's changing all the time. And one of the things you're seeing most of the change in is the research around brain health. So what can you do yourself to promote a healthy brain? And as we know, that's really well aligned, isn't it, Geoff, with the Ms. Program? So, yeah, a lot of the new research just really, I guess underpins but also reinforces what we say in the Overcoming Ms. Program.
- [25:13]
B
And Jonny White was saying it's quite an optimistic time for people with Ms. Would you go along with that?
- [25:19]
A
Yeah, I mean, you know, I was diagnosed coming up to almost 13 years ago and you know, there were not a lot of treatments back then at all compared to now where there is so, so many and so so many in the pipeline and that's only in the space of 13 years. So where are we going to be in another 13 years? So I agree. I think it is a really optimistic time. I think the other reason to be optimistic is that, you know, we're seeing the neurology profession and you know, the health services, really recognizing the importance of self management, not just how important it is, but that the research surrounding it is so valid, you know, and really supporting patients more and more with making healthy lifestyle changes. So I think there's lots of reasons to be optimistic about, about, you know, managing your Ms.
- [26:06]
B
Thank you very much for joining.
- [26:07]
A
Thank you, Jeff.
- [26:08]
B
So joining me now is Maureen, who is attendee of the event today, but also the ambassador for the York Ms. Circle. So welcome.
- [26:18]
A
Thank you.
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B
And start with, what have you got out of the event today? What would be some of the key things?
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A
I think it's, it's just fantastic to, to meet so many people. And so I went to Edinburgh six years ago and it's just, it's exactly like that. You know, you can come on your own not knowing anybody and, and everybody you talk to is on the same page and very friendly. Just you make new friends throughout the day and just to, to hear the speakers as well and reinforce some of the pillars.
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B
It's an odd thing, isn't it, because they would say we've all got a unique disease, however no one else sort of gets it like other people with Ms.
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A
Absolutely, absolutely. Yeah. Yeah.
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B
And, and, and what inspired you to become an ambassador as well for the circle?
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A
Well, I really enjoyed the, the conference in Edinburgh six years ago and when I was there I ended up sitting next to somebody who was from York as well, less than two miles from me by coincidence. Yeah, absolutely. Yeah, yeah. We just said, you know, where are you from? We're like, oh. And we continued meeting and we used to joke and say we were our own, you know, sort of little private circle. And then I got involved in doing a, a book group reading through the, the Big OMS book with Gina and somebody else. Just that, you know, talking things over with other people I found really helpful and I thought I should be doing more of this and, you know, allowing other people within New York area to, you know, to, to have the benefit of speaking to other people.
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B
And would you encourage people to get involved in a circle if they're following the program but they're not involved with other people?
- [28:01]
A
Absolutely. Yeah. Yeah. You can get hints and tips from other people, you can encourage other people or you can be encouraged and there's somebody to turn to if you need a bit of advice. Yeah.
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B
And there's been a lot of talk about what's new at this conference. So is there anything that you've learned from here as someone who's an experience. Experience.
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A
It was interesting to hear about the intermittent fasting. I tried that a few years ago. This, the 16, eight, you know, the time restricted eating.
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B
Yeah.
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A
And I think I just found it too restrictive. And in the last few months. Well, the last couple of months because I, I retired at the end of August, so. Which is fabulous. And, and I've just fallen into sort of time restricted eating without even thinking about it. We have our evening meal, about six, half six, and then I go to the gym or I swim in the morning and I'm going a bit later than I used to and I never eat until I get back. So I'm finding it sort of half past eight, nine o' clock by the time I've had my breakfast. So I'M I'm doing, you know, 14 hours fasting without even thinking about it. So it was good to hear, you know, that that is a possible, really helpful.
- [29:11]
B
And I think the whole thing about that sleep counts in that, you know, there's eight hours.
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A
Yeah.
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B
Without thinking about it. So you actually, you do four hours before that. Four hours after you've done 16 hours.
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A
Yeah. Yeah. And, and I, you know, people say, oh, you, you know, how can you exercise without having eaten for so long? You don't actually notice that, you know, you don't want to exercise on a full stomach. So. Yeah, no, it's. Yeah.
- [29:36]
B
Okay. And have you had a good day?
- [29:38]
A
I've had a fabulous day. Yeah. I'm shattered, but I've had a fabulous day. Yeah.
- [29:44]
B
Thank you for joining us.
- [29:45]
A
Thank you. Do you want to live well with MS? Join the Overcoming Ms. Community in the LiveWell Hub. It's your place to get support, find connections, and feel motivated to make positive lifestyle choices. Download the LiveWell Hub in your app store today or visit hub.overcomingms.org to join. We hope to see you there.
- [30:11]
B
So joining now, Jasmin Nevers. We are, we have met before.
- [30:15]
A
We have, I think twice. We've done two podcasts.
- [30:17]
B
So you're here as a speaker at the event. So what have you been talking about?
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A
That's a really good question. I think it's important when you're dealing with some really, like, serious and heavy topics sometimes to bring some lightness to it and go, always haven't got a look at it. If you're a really serious scientific lens, sometimes it's just about bringing the human element to it and having a little bit of a laugh. It just lightens the mood. That's what I think anyway. But no, it's been a really good day, I think.
- [30:44]
B
And so what would be some of the key takeaways that you come across?
- [30:48]
A
There's a real scam. I say this all the time about this community and I feel like I'm a bit of a broken record. But there's such a great energy in the room and it's always a good reminder for me to go, okay, we're doing really good work here at okls and we are having a positive impact on not only people who have been on, like, retreats many, many years ago, they're still coming back now and like, refreshing their knowledge. People who are newly diagnosed and kind of walk in a little bit like I was a rabbit in the headlights, not really knowing what to do and just seeing those Sparks of inspiration in their eyes. And I've spoken to a few people who I met on the door when they walked in and now during lunch and they've just sensed a real shift and. And they kind of feel a bit more empowered because they've got this community around them now. I'll speak now.
- [31:33]
B
And where do you think things have changed? What's like, what's new in. In the world of overcoming? Yes. Has there been any advances?
- [31:41]
A
I think. I think the main change recently was the vitamin D recommendations. They have changed for overcomes. I think what's been really exciting about today's sessions is that we've talked about some hot topics. So we. It's not topics that overcomers are recommending. It's almost like what is going out there in the world? What else could we potentially be looking at and thinking about? So things like your gut microbiome, things like sleep, things like your nervous system. Is it your friend or can you work with it to regulate yourself? Smouldering Ms. So these aren't things that are part of the current Overcoming Ms. Program. They are things that I think are good conversations to have and if people feel inspired to want to know more, hopefully we can look into it. And the thing I love about overcommerce is that they are constantly, always looking at the program and going, is it still right? Has the science changed? Because, you know, science does change.
- [32:35]
B
And so would you say if there's those things which may be not part of the core program, maybe it's fasting would be an example that people try those things. If it's not, you know, one of the. Do you not.
- [32:46]
A
Do I think I say this all. I say this all the time as well. Everyone is very much on their own journey and we've all got very different bodies, we've all got very different lifestyles, varying levels of disabilities and we gotta find what's right for us. And someone might try fasting and go, yeah, this is exactly what my body needs. Someone else might try it and go, it's not right to me where I am right now. I think it's all about empowering people to take back control in all aspects of their life. And gone. What do I need to do to look after me?
- [33:20]
B
Okay with that. Thank you very much for joining us.
- [33:24]
A
Thank you.
- [33:25]
B
So joining me now is Miriam, who is the chair trustees at Homecoming Ms. So welcome.
- [33:31]
A
Thank you. Thank you very much. And I believe a newly appointed enroll nearly two months. So 15th of September I was appointed. Yet here's two months today wow. Yeah, yeah.
- [33:41]
B
So what inspired you to take on that role?
- [33:44]
A
Well, I already have been sitting on various charitable boards. I'm chairing a development committee of one of them. And I just thought, right, I've been a trustee now for probably eight years in total of various different charities, and I thought, I'd really like to chair a charity. And then out of the blue, I got a phone call from a recruitment consultant who said, I've got a brief that we think would be really interesting for you. It's overcoming Ms. And three years ago, just about, I was diagnosed with ms, so it just felt like this is absolutely perfect for me. So went through the interview process, and the more people I met, the more I learned about the charity, the more excited I was. So I really wanted it and I'm really pleased I got it.
- [34:30]
B
And what's today about? Is this your first event you come to?
- [34:34]
A
Absolutely, yeah.
- [34:36]
B
What have you found as an attendee?
- [34:37]
A
It's amazing. In fact, I feel like I've learned so much today in just a bunch of hours and things that I didn't know about, even about a condition that I'm living with on a daily basis. So the speeches have been inspirational, but I think it's also just that sense of community. And I said to someone over lunch, I have never been in a room with more than one or two other people with ms, but to be in a room where almost everybody who's sitting there is their own unique version of the condition, because we all have a very. Everybody's Ms. Is different is something that you often hear. But everybody, almost everybody in that room is also living with Ms. And trying to deal with it. And an event like this, you know, the charity is all about living, living well with Ms. And hope. And there just feels like there's so much hope and optimism in the room, so I'm loving it.
- [35:34]
B
So where would you say, as you're sort of looking from the top down, where is the charity going, do you think? I mean, it's moved on hugely from the original George Jrnak and Linda founding it to now where it is. But where do you see it in the.
- [35:48]
A
Absolutely, yeah. I've had the wonderful privilege of spending quite a bit of time with Linda, which is amazing. And I've also met George, obviously, virtually given that he's in Australia early in the morning for me, late in the evening for him, and their legacy is incredibly important as we look to move the charity forward. But I think it's a small but mighty charity, and every day more people are being diagnosed with this condition, which is chronic, which is lifelong, it can be speaking personally, very overwhelming when you hear the diagnosis. And a charity like overcoming ms, which, well, there is no other charity like it, which is all about creating that community, bringing hope to people, and also helping people learn how to live well with a lifelong condition is amazing. So for the future, we need to make sure that more people know that this charity exists. So that I didn't know when I was diagnosed, and I think it's really important to me that on diagnosis, people know this charity exists and is here for you. I'm also very passionate about making sure that we have the health care professionals, the neurologists, knowing what we're doing and using what we're doing as a support for whatever medications and medication is part of the program to make sure that when people are being recognized as having the condition and then maybe prescribed a course of medical treatment, that also lifestyle living, well, the things that the charity does are part of it. So, you know, it's a charity with small charity with very big ambitions, and I have really big ambitions in my time as chair to make sure that everybody who is touched by this condition knows that we're here and overcoming Ms. Is here to help.
- [37:49]
B
Well, I very much hope you succeed in your ambition.
- [37:52]
A
So do I.
- [37:52]
B
Thank you for the day and thank you very much for joining us.
- [37:55]
A
Thank you. It's been a pleasure.
- [37:56]
B
Thank you. So joining me now, Neil Stanley, who has been talking about sleep at the conference. So tell me what, give me a little praise of what you've been talking about.
- [38:08]
C
Well, the thing with sleep is that it's central to everything. It's the basis of what we build a healthy life upon. So when we talk about diet or weight loss or exercise or coping strategies, depression, pain, all of these things are under written by a good night's sleep. And so we try to do many of these things. We try to live healthily, we try to live well. But if we don't have our sleep as optimized as they can be, then we're going to be sort of fighting with one hand tied behind our back. And people, I don't think, realize the importance of sleep. They see sleep as something they have to do. They may not be doing it well, but they still have to do it. And maybe in Ms. There's a sense of hopelessness that, you know, sleep, poor sleep comes as part of the illness and therefore what can we do? So that what I was talking about, they're talking about that whatever situation you may Be in that any improvement to your sleep will pay dividend. And so I was giving tips on how to get a better night's sleep and also say outlining the importance of why that is something we should be aiming to do.
- [39:21]
B
And is it a quality or quantity thing? Is it like your eight hours and you're good?
- [39:26]
C
Well, well, eight hours is a myth. So it's getting the right amount of sleep you and essentially if you are asleep, if you give your body and brain the time it needs to get the sleep it needs, then the quality of sleep will be done. The brain and the body are self regulating. So if you can reduce the number of awakenings and aim for a consolidated night sleep, that would be the best thing you can do. But again with an illness like Ms. That's going to be difficult and we're.
- [40:00]
B
Both middle aged men, so there are other issues, there are very much other.
- [40:03]
C
Issues that come aboard to there. So but as I say, sleep is self regulating. If you can improve your sleep as much as you can, you will get the quality of sleep that you can at that stage of life or of disease progression. So that's the important thing to aim to be in bed for just a bit longer than you know you need to be asleep. People say, well, how do you know how long you should get to sleep? Well, essentially it's the time that allows you to feel awake, alert and focused during the day. If you feel good during the day, you've had enough sleep. If you don't feel good during the day, you probably haven't had a good night's sleep.
- [40:43]
B
Do you think, should you wake up naturally? Is that the right amount of sleep?
- [40:47]
C
Well, yeah, I mean, hopefully yes. I mean your body, given the chance and without any disturbance, whether external or internal, the body will naturally wake up when it's had enough sleep. And you should go to bed when you feel sleepy, regardless of what time that may be. If you feel sleepy, you should go to sleep. And in an ideal world, your body will wake you up naturally and you'll, you know, and as long as you feel okay at that point, then it doesn't really matter what time it is. People think, oh, you know, I must get up at 7 o'.
- [41:20]
B
Clock.
- [41:20]
C
So if they wake up at 5 o', clock, this is somehow a terrible thing. But if they feel fine at 5 o', clock, then get up at 5 o'.
- [41:27]
A
Clock.
- [41:27]
C
I mean, this morning I woke up at quarter to three. I really didn't need to wake up at quarter to three, I needed to wake up at five o' clock to get here. But I woke up. I knew I wasn't going to go back to sleep. But instead of lying there tossing and turning, getting frustrated because I needed to.
- [41:44]
B
Get up at 5, I just got up, pushed the light on, read a.
- [41:47]
C
Book for however long I needed to, and then you about, you know, quarter.
- [41:52]
B
Five, like, I don't know. And so we hear a lot about sleep hygiene nowadays. What would be some key takeaways if someone wants to improve their sleep hygiene?
- [42:01]
C
Well, sleep hygiene is. Is a sort of a misnomer. It's sort of a coverall term for any sort of sleep tip. You know, put 10 sleep tips together and you've got sleep hygiene. And really, you can simplify it even more than that. You can go down to three tips, and those are a bedroom conducive to sleep. So one that's dark, quiet, cool, comfortable, a relaxed body and a quiet mind. Any other sleep tips fit into those three bins, shall we say? So it's finding the way that works for you. So when I say a quiet mind, well, how do you quieten your mind? Well, how I quiet mine may be very different from you. I mean, I always read before for sleep. You may not. You might listen to music, you might do yoga or journaling or whatever. So it's finding the way that works for you. But you need to put the day to bed about 45 minutes before you go to bed. So put your cares and worries. Don't open the gas bill just before going to sleep. Don't argue with your partner just before you go to sleep. So you know those commonsensical things. But it's just seeing sleep is important. The minute you see sleep is important, you'll start doing those behaviors that will give you a good night's sleep.
- [43:17]
B
Okay with that, I'd like to thank you very much for joining us.
- [43:20]
C
Thank you very much. Thank you, Jeff. Thank you.
- [43:22]
B
A returning guest. So you're here today. What's your role today?
- [43:28]
D
So I'm, I'm doing a talk, like comedy slash, hopefully like somewhat inspirational to talk about. Like, is laughter the eighth pillar? So I just kind of propose that maybe there is an eighth pillar for everyone, really. And for me it's laughter. And so maybe it's that for some other people, maybe it's not, but. Yeah.
- [43:49]
B
So why would you say it's important?
- [43:51]
D
Yeah, I think laughter is important because I think it. My understanding is that it relieves stress in a way. And I mean, stress management is a big. It's part of A pillar of overcoming ms, but also, I think, just in general, for our general health. And I think laughter is like a positive expression of emotion, essentially. We also cry. I think crying is a good stress reliever too, but that comes out of a. Different emotions, maybe.
- [44:17]
B
So do you think that laughter could take you out of a sort of negative spiral where you've got. We've got an illness that is incurable. If it's gonna do anything, we're gonna get worse, we're not gonna get better, for sure. And actually, I think independent of that, they've found that GMS causes depression more than any other condition.
- [44:35]
D
Yeah. And so.
- [44:36]
B
Yeah. Is there a benefit to laughter? Can that break the cycle, do you think?
- [44:40]
D
I think it. I don't think it cures, like, anything, but I think that. And I. Yeah, it's interesting with the depression factor because I definitely have dealt with depression for a lot, actually. It's kind of like the tears of the clown kind of thing with me.
- [44:54]
A
Right.
- [44:55]
D
But I didn't really credit Ms. With it for a long time, and I saw them as separate things. And then it just. Over time, I came to understand more like, you know, having a chronic illness anyway, but then also one with the. The possibilities of ms, which is, you know, a reduced quality of life over time, did weigh on me, and I didn't necessarily realize it. Actually, it was at the Overcoming Ms. Retreat earlier in the year that I attended that a few things really hit me, like a few aha moments. And I've lived with Ms. For 25 years, so it's a long time. And like you, it was kind of like teaching, you know, for lack of a better word. But an old dog knew new tricks or new information, and so laughter. Does it cure it? No, but it. It can be a stress relay. Like, even if you laugh, you know, a little bit, like, at least it's a moment. And maybe it can. It can. You know, they all say laughter is contagious. Certainly growing up at home, like, me and my brother and sister would, like, just laugh and keep laughing and it get worse and worse, and until we got in trouble, you know, But I think. I think starting to frame things in a way like where you can laugh at them helps, and it doesn't mean you're always going to laugh at them, but at least maybe you'll have the memory of the laughter that will help you too, because I think over time, like, we all have different symptoms and different levels of mobility and different things that happen to us. And, you know, it's an Invisible illness a lot, too. And I think that, you know, just being able to, like, say, oh, yeah, like, I fell, but. And that's horrible, like, to fall in front of people. But then the way someone reacted is funny sometimes. Like, I fell, so I fell in Camden, where I live, and this guy was like, oh, you know, you got to stop drinking so much. And I was like, I mean, maybe that's true of me. Like, but it wasn't. I didn't fall because of that. I just fell because I fell, you know, and so then it was just funny. And then these three guys were all treating me like I was super drunk, and I thought it was, like, they were really kind. But it was also very funny to me because I was like, I'm not drunk. And. And then trying to convince people you aren't drunk makes you seem drunk. So I was like, wait, am I like, what's going on? I just went to the S, you know, to buy food. And I think it was just, like, I was embarrassed, but then I was almost like, well, their reaction is so over the top the other way that I just kind of was like, forget it, you know, And I told whatever my friends, like, oh, yeah, these guys. And I was trying to convince them I wasn't drunk, and that was making it worse than they would, like, really thought it was, you know?
- [47:07]
B
Yeah. Plus, sort of having MSV is. I've become really good at falling over.
- [47:11]
C
Yeah.
- [47:11]
B
I don't, I have not broken a bone. I don't, you know, I can fall over.
- [47:15]
D
It's a talent.
- [47:16]
B
Yeah, Yeah, I can. I, I, I would very rarely hurt myself.
- [47:19]
D
No, I get it.
- [47:20]
B
I'm good at falling over.
- [47:21]
D
I get it. I mean, in my talk, part of what I'll talk about is how I, like, as a tourist, I've seen a lot of cities from the ground, you know, but I mean, literally from the ground.
- [47:30]
B
Yeah.
- [47:30]
D
Like, so. Yeah. So I, I don't know. I mean, it's not a cure. It's not anything other than just saying, like. And for me, my question really is, like, for me, it's laughter. Laughter's been important to me because I, I do standup comedy, for one thing, so it's like a, A metric of success, I suppose, but even before I was doing that, I've always used laughter to deflect things and whatever, and so bringing it to the Ms. Fight is no different. And for someone else, the eighth pillar might be something different. And so that's kind of a thing I'm going to pose too. Like, what's your eighth pillar? It's like the seven we know. Right. Because they're all scientifically proven. But there's also other motivations people have and other things people do to cope in addition to those things. And I think mental health is like such a big part of stuff and there's stress, but there's other stuff with mental health too.
- [48:12]
B
I like that idea of having a toolkit as well. People talk about and it's. I think that's one of those. Something you can.
- [48:18]
D
Yeah.
- [48:18]
B
You can bring to, to it to help you.
- [48:20]
D
Yeah. And have people who, like there was a talk in a. The, the Olympic athlete, she was talking about like your team and I, I. And having a team to kind of back you up. And I think, yeah, we all need a team and like I need people who are my non Ms. Friends to get. Not to understand the Ms. Fully but just to understand, like I can say something and it's not a big devastating thing. Like I can just say, yeah, I'm feeling bad today and whatever. And then, you know, maybe I can make a dark joke and get it. As much as I need my Ms. Friends to understand because that none of us is, is Ms. We are not a physical embodiment of, of something weird. This is a condition that's part of our lives and just like any other thing would be. And so we don't want to always be talking about it, always being seen as. At least I don't. But I think humor is a way to make it relatable too.
- [49:11]
A
Like.
- [49:12]
D
So I kind of, I don't know, it's just, it's what I try.
- [49:15]
B
Brilliant. I think you do a brilliant job.
- [49:16]
D
Thank you.
- [49:17]
B
Thank you for talking to us.
- [49:18]
A
Cool.
- [49:18]
D
Yeah, thanks a lot, Jeff.
- [49:20]
B
So joining me now is Amy from Ms. Together. Welcome to conference.
- [49:23]
A
Thank you.
- [49:24]
B
So, Mississippi Together, where do you sit in the Ms. Charity space? What's your niche, if you like?
- [49:31]
A
So we focus on supporting people aged 18 to 35 living with Ms. We have like a nationwide presence and then we offer lots of different services to the kind of younger adults living with ms, but also to anyone that's affected by Ms. As well. So. Yeah.
- [49:47]
B
And so do you find, because I think most people are diagnosed, that sort of age range? I wasn't, I was older when I was diagnosed. But is that typical in the sort of twenties?
- [49:57]
A
Yeah, I think it's most commonly diagnosed in your twenties and thirties. I think that's also potentially getting a bit younger, I think because, you know, the diagnosis is getting quicker and it's because people are becoming more aware of the fact that young people can also have Ms. I think for. For, you know, quite a while, it was seen as a bit of an older person's condition, but I do think it's becoming more common for. For younger people to get diagnosed.
- [50:21]
B
Do you think younger people have, like, challenges because of their age group?
- [50:25]
A
Yeah, definitely. I think that's one of the reasons why I want. Wanted to set up Ms. Together, because I think when you're kind of in your 20s and 30s and even, you know, in your teenage years, you're going through so many different kind of life events. You know, you're at school, you're going to university, you're getting your first job, you might be changing jobs, you start in a family or thinking about starting a family, and so many other things in between. And I think when someone gets diagnosed during that kind of life stage, the need for support is so much more sometimes because, you know, you're trying to navigate these, these life events, but you're also trying to navigate your new life living with Ms. And everything that comes with that. So I think there's. There are definitely specific needs that younger, younger adults have when it comes to the support that they need in terms of.
- [51:19]
B
So. So overcoming Ms. Is looking at. Looking at, I think it's the proper word, but the whole thing, so healthy lifestyle as well as medication and everything, are you aligned with that sort of idea that, you know, keeping yourself healthy is part of the treatment plan?
- [51:35]
A
Oh, definitely. I mean, from even just a personal perspective, when I got diagnosed, when I was 21, I probably wasn't looking after myself as much as I could have been. I was at university at the time, so obviously, you know, going out too much and, and not, you know, prioritizing my health. But then over the next few years, I realized that when I was making changes like exercise, exercising more and eating a bit better, and they weren't even drastic changes, but just being a bit more mindful about what makes me feel good and, you know, what doesn't. I think I saw a massive, A massive difference during that time. So it's definitely something that I see a lot of people at Ms. Together talk about as well. You know, things that have helped them and just introducing better kind of decisions and just looking after themselves a bit more.
- [52:19]
B
And if people want to find out more about you, how would they get in touch? Obviously, this way.
- [52:23]
A
Yeah. So there's lots of different ways to get in touch. And we've got a website which is w.mstogether.org and we're also on social media at Ms. Together official and you can also just email us at hello s2gether.org okay, thank you very much. Thank you so much.
- [52:40]
B
So joining me now is Dom, or maybe better known as the Ms. Guide online on all forms of social.
- [52:48]
E
I believe it's kind of spiral. Jeff.
- [52:50]
B
Yeah.
- [52:51]
E
Started out five years ago with a man you, you, you know called Aaron Bosser.
- [52:55]
B
A doctor. Yes.
- [52:56]
E
And he friend, he talked me into starting a YouTube channel. I mean I was wondering about it and then it spray YouTube, TikTok, Instagram, you know I put some content on LinkedIn but that's sort of where my professional self lives.
- [53:08]
B
So what, what will you be up to lately?
- [53:12]
E
Would that be the Cycling Across Canada? So earlier this year cycled across Canada to raise money for Ms. And health being the big thing. I mean I'm, I'm heavily involved in the world now. I didn't get involved. I deny my Ms. I've had it for 34 years, I embrace it. I'm not sure if that's the right word, you know, but at least you know I know. And at five different DMTs it's just, you know what it's like. I feel like we're all fighting a rear guard action to a greater or lesser extent these days. There was no information and stuff like that. There was no Internet.
- [53:47]
D
You know.
- [53:48]
E
When I got diagnosed I was sent away with the wise words from the neurologist when I said oh so what, what should I do? Eat less red meat.
- [53:56]
B
But that's not terrible, that's. So my father had Ms. And he was not told that and he was, he was told do whatever you want because you know, you don't make your life any worse. So he was still smoking. He was even told to stop smoking.
- [54:11]
E
In those days there was nothing premier so they knew that it was a greater or lesser times you would say till you ended up in a wheelchair. I mean I, when I was diagnosed in 93 most of the charities imagery was around people in wheelchairs and I'm thinking suddenly that's not me. I don't feel like this, I don't feel like I connect. I was younger. Now there's charities. I know you're speaking to Amy from Ms. Together we still with the, the younger people. There was, there was nothing to me it was just old people in wheelchair. When you're 23 over 35 is old but I mean thankfully it's all changed so much.
- [54:43]
B
And so you, because you do regular you go to all the conferences, you interview all the experts. What would be some takeaway things that you'd say for people that someone's newly diagnosed, what would you say? You know, what should they be doing?
- [54:56]
E
A couple of easy things are get on the highest efficacy therapy as soon as you can. It's about brain reserve. It's about preserving your function. All these, you know. Well, not all these people. There's always some people like, I'm gonna. I'm gonna juice kale and fight this naturally. And you're thinking, it makes my heart sink. You don't want to be horrible, but you're thinking, good luck with that. The data does not support it. Got on the highest efficacy thing earlier. Number two, liver, brain, healthy lifestyle, size, diet, sleep, and boy, it took me a while to come to that. You know, when you're young and you won't break, you know, you're 18 and 20 or whatever, it's like, that's for other people, old people. And all of a sudden you are one of those old people.
- [55:37]
B
And the efficacy thing, I think there was a tradition. Well, certainly was. I think it was actually sort of.
- [55:42]
E
Written down, escalation versus start.
- [55:44]
B
You on the lowest one, didn't they? No, that didn't work. And so you're building up your disability until they get you to the decent drugs.
- [55:50]
A
And it's like, it was absurd.
- [55:52]
E
It was like you had to win the prize in the most efficacious drugs. Find the suffering irreversible disability. It was like, perverse, you know, and you think this system could only be jumped up by somebody who didn't have to live with what you and I have to live with.
- [56:07]
B
Yeah, because we both had lemon trotter, but that meant that we failed on another treatment.
- [56:11]
E
But, I mean, I. I saw you. You have a sick. I have, too. And it doesn't look like it. You know, this invisible disability thing. So I have really bad diploma. If it's not corrected by glasses, they can't go any better. I have a huge focal length difference between in my eyes. So in the next 12 to 18 months, I'm going to need both lenses replaced in my eyes and what they call squint surgery underwear. I value my eyesight and the ability to do things like get in the car and safely, but it's just like. But you don't see it, do you? We're sitting here. Who would know? Yeah, but you've got a progressive degenerative disease. And I just wish that these good drugs that we have now were available when I was diagnosed.
- [56:51]
B
So would you say from what Johnny was saying earlier, is this an optimistic time? I know we've got ms, but is it. Would you say that there is possible.
- [57:01]
E
There isn't a cure, but, you know, the advances in understanding have come. So I would take a great deal of optimism and from a general thing, and I know everybody talks about AI, you know, but it's used properly. I mean, there's a lot of number crunching, should we say, with them, you know, research going through. There's. I know there's researchers now that are sort of turning onto everything that's been done to look for links. It can just do so much more than you and I can. Yeah, I'm. I'm on the board of a company which has developed an insole that uses AI for gait measurement. So because the thing is, neurologists are kind of like lawyers. If you ask 25 neurologists for an opinion, you'll get 25 opinions. And they tested this. So they gave these neurologists a video of this person walking, asked them to assess it. 25 different assessments from trained experts. So these insoles make it. They take 200 measurements five times a second, and at least you get. You get an absolute baseline. So there can be no difference between you and me. This is it. You know, it doesn't cure anything, it doesn't help it, but it provides really good, reliable, repeatable information. They can tell when you're having problems with the RMS before you can. It's your gait changes.
- [58:11]
B
Let's say drugs working, better technologies. There's some positivity to that.
- [58:15]
A
It.
- [58:16]
E
I'm on the board of a trial where we're looking at the use of AI in mri. So its ability to look at things. I mean, I always say AI, it doesn't need coffee, it is never in a bad mood, it's never had a bad night's sleep. You plug it in and it does the same thing today that it did yesterday and the day before. So once it's properly trained, it's not a neurologist replacement. But when you know that, you can believe it. It's in use already in many parts of the world. Yeah. It just reduces the workload, it enables the conversations to. So they have an MDT to talk about our drugs. Yeah, A multidisciplinary team at the hospital. Neurologist, neuropharmacist, Ms. nurse on the minimum. Yeah. And there can be other people, but neuroradiologists. This informs the discussion and the AI can see if your lesion has increased to 1 millimeter at some point of it. Bear in mind it's a 3D thing. Humans don't always get that as good as they are. That's what I mean. That's how AI is going to. The optimism for me comes through how that's going to interface with the healthcare and make our lives better because there's.
- [59:19]
B
No cure yet as a final point, you, we mentioned you're on all the socials. How do people find out about you? Because you've got a lot of content out there.
- [59:26]
E
It's at the symbol, the Ms. Guide. So if you go to at the Ms. Guide, whether it's on so TikTok, Instagram, YouTube or I'm on LinkedIn as well. Dominic Shadball. So it's. Yeah, that's how people find me. Okay. Yeah, yeah.
- [59:40]
B
Recommend. Check it out.
- [59:41]
E
Yeah, thanks very much.
- [59:42]
B
Appreciate your time. Thank you. Cheers. Joining me now is Eleanor from Shift Ms. So welcome to the event. Start off with. Can you tell us a bit about Shift Ms. And what it stands for?
- [59:52]
A
Yes. Shift Ms. Was set up quite a while ago now by George Pepper, who was diagnosed with Ms. When he was in his early 20s. And he set up Shift because he basically felt like he couldn't find a place where he could find people like him with Ms. Obviously he was diagnosed quite young and he felt like all the places he was going were maybe people that were further on in their journey than him. So he set Shift Ms. Up and we have been on the web for a long time, but we are an online digital community and charity and we now have an app. So about two years ago the app was launched and that is essentially an online forum where people can ask and answer questions about their condition, they can find people to chat to that are like minded like them and message each other. There's also a collection of videos there with MS's in themselves.
- [60:43]
B
So a lot of it is about community, would you say?
- [60:45]
A
Yeah, yeah, it's very community initiative based, I think because these days especially I feel like, you know, it feels like there's a lot a loss of kind of third spaces and places where people go to spend time with each other in person. So online has become a natural social place, but it's also a place that's not always filled with positivity when you think of your kind of generic social media channels. So it's basically just trying to be a place where people can go to find a bit of positivity and learn a bit more about their Ms. And.
- [61:19]
B
What'S your sort of takeaway on the side of lifestyle and ms? We're. So it's a healthy lifestyle charity, overcoming ms, but also not anti drugs at all. So saying, you know, whatever it takes. One of the taglines, what's your thinking? Are you sort of pro drug, anti drug, pro, healthy lifestyle or where does it sit?
- [61:39]
A
So one of our things that we always say is at SHIFT is all about tackling Ms. With urgency. So Ms. Is something that it can be easy to kind of sit back and put your head in the sand or be in a stage of denial, which is completely natural and valid. Taking control of your health is the most important thing. And, you know, George has always talked about how getting on a DMT quickly, you know, has helped him and how. How it's beneficial for a lot of people in the community if they can, but also doing that alongside healthy lifestyle choices, healthy diet, you know, taking supplements, exercising and taking care of your mind. We do a lot of stuff in terms of, like videos and volunteering, where Ms. Is talking about mental health and how they kind of maintain positive mental health in times of crisis. So, yeah, I think we're kind of like a bit of a joint approach, you know, if you can be on a DMT ball, so engage in those healthy lifestyle choices.
- [62:38]
B
And one of the main things, how would people find out about you? You're international, I believe so UK charity, but with an international region. So. So how do people find SHIFT ms? I'm guessing that might be the website.
- [62:51]
A
Yeah, so we do still have a website. We're not sure on the future of that since we've got a sparkly new app. But if you search SHIFT Ms. On Google Play or App Store, that's where you can find the app. And it's completely free to download.
- [63:03]
B
Right. Okay. Well, thank you very much for joining us.
- [63:06]
A
Thank you for having me.
- [63:07]
B
So we're at LivingWell Live, and joining me today is Sarah from MSUK. Welcome to the event.
- [63:13]
A
Hi, thanks for having us. It's really nice to be here.
- [63:16]
C
Yeah.
- [63:16]
B
And it's good to have other Ms. Charities, I think, involved that we're not in competition with each other or dare to help everyone with Ms. 100%.
- [63:25]
A
Yeah. Ms. UK, I feel like our charity and our services that we provide complement overcoming Ms. Really well. You know, what we believe in is providing emotional support so that people with Ms. Can make informed decisions about how they want to live with their condition. And, you know, we speak to people on a regular basis about how diet and lifestyle Changes can make a massive impact on how they can live with their condition. And we're always recommending the Ms. Diet to our celebrities. And, yeah, I think it's a great event to come to, so thank you for having us.
- [63:59]
B
That's. No, it's fine. And so it's a UK charity, obviously, so if people in the UK are interested, where can they find that? I mean, I've seen. Is it Pathways Magazine? Is that your.
- [64:09]
A
Yeah. So new Pathways Magazine is the old. Is as old as the charity itself for over 30 years. And we say it's our magazine for people with MS, by People with ms, because it has all the latest and research in it, but also, most importantly, has real life stories from people living with Ms. And, you know, we're not medical professionals, we can't give advice, but sometimes you just need to hear others who have been in your position. So that's kind of how New Pathways works. And then we also have our helpline and, you know, there are no TV subjects. If it's important to the person with ms, then you can call and talk to us about it. And you don't have to have a diagnosis, you'd be trying to get one. And we also support healthcare professionals with their questions, friends and family, carers. You know, we're here for everybody. In addition to that, we offer peer support and that's groups of people, people that meet online. Some have themes and some are just dropping sessions. And you don't have to come and talk about your Ms. Sometimes we'll just talk about what's on TV that week, but it's just nice to sit with a group of people who get it.
- [65:11]
C
That's.
- [65:11]
B
No, totally, because we have a similar sort of thing. We have like groups and actually it's nice just to chat, but the people you're chatting with, we're just talking about normal things. They all on the same, they understand.
- [65:23]
A
And, you know, you don't have to explain why you're sitting and not standing or whatever, you know, all of that kind of stuff. So that's nice. And then we also have our online activities. And so we offer a variety of weekly online sessions, exercise classes, yoga, qigong, information sessions about different symptoms. And we get different experts from different industries. So we've had you guys on, I think, talking about the OMAS diet, you know, so that people can learn about things that perhaps they haven't come across before. And again, it's about choice, providing people choice, but all of our exercises, accessible, different levels of ability. So whether you're mobile or you know, using a mobility aid. All of the exercises are adjusted to suit, which is great.
- [66:12]
B
And how do people find out about you? What's, what's the best way?
- [66:15]
A
So you can visit our website, that's Ms. Uk.org and on there you'll find all of our services, lots of information and our portal which is where you can access the online stuff. You just register. It's free to register and you can take a look at all of the different events coming up and sign on and get your ticket basically. And if you can't make the event at that time, most of it is on catch up as well, so you can view it at a later date.
- [66:43]
B
Okay, well, and thanks for joining us.
- [66:45]
A
Thank you so much. It's really nice to be here. Thank you. Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful, useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share Share. Email us@podcastovercomingms.org we'd love to hear from you. The Living well with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.