Nick:
Hi, I'm Nick
Helena:
And I’m Helena. And we both work at the MS trust, a charity for people affected by MS in the UK
Nick:
We'd like to welcome you to our podcast, multiple sclerosis, breaking it down. Today, we're going to carry on a bit from our last episode where we were looking at brain health. So we covered things like sleep, exercise, diet, and we get told from time to time that these things are really good for us. But like we discussed in the last episode, there's so much out there, and it can be quite overwhelming just to start looking at changing anything like wow, I've got to, you know, change my exercise regime, or change the way I sleep. You know, I'm dealing with MS anyway. So that's another huge hurdle anyway. So we know that so many people have like, really, really strong opinions on what you should be doing what you should be eating, the way that you should be exercising, it can be really, really difficult to know where to start. You can imagine maybe trying to build a house. And you've got a lot of building blocks, but you don't know where to start. So maybe you might need something like a project planner to help you.
Helena:
And I think in our community as well, you get a lot of people trying to sell ideas and methods, not always just for profit. But you know, people are strong believers, like I said, there's a lot of strong opinions. I've seen it many times where they say if you're selling multiple sclerosis three times in a mirror, and someone will show up and say, have you tried yoga to cure it? And you can quite easily become quite cynical about these things, because people like to, you know, really kind of vex about these things and get really, quite, you know, almost preachy about it. I think, when I was newly diagnosed, so many people started to tell me about cutting out this, that and the other and I should start exercising, and I the only running I want to do was probably running away from them to just hide because it was just a bit too much. And I do remember feeling quite ashamed about that maybe I lived an unhealthy life, I wasn't sure you know, maybe, maybe I should be exercising and eating better. And those feelings of shame that just made me do nothing. Instead, it didn't sort of motivate me to do anything, you know, change anything. So for some ideas on how to get started to think about making changes, but without feeling overwhelmed or shame. I spoke to Charlie Peel today, who has written a paper called ‘disease modifying lifestyle and multiple sclerosis evidence challenges and the importance of engaged informed patients’. So that might be confusing, as the title, but it was very interesting the idea of it. So we decided we wanted to chat to Charlie. So we're talking about what is a disease modifying lifestyle, why it's important, and how to sort of get stuck.
Nick
Yeah, looking forward to that, Helena. And also, we'll be talking to one of our colleagues here at the MS trust, Stephen. So he's just started working in our Fundraising team. And he's in charge of the popular challenge that some of you might have done before, Miles for MS. Stephen also has MS himself. And we'll be talking all about his own journey, taking part in miles for MS, and how you can get involved too. So loads to get through today, you're probably sick of listening to Helena and I so let's kick things off with our first interview with Charlie Peel. And let's find out just what a disease modifying lifestyle is.
Helena:
We hear a lot about making lifestyle changes in order to live better with MS but this generally it would be up to each and every person to try and consider themselves. What about if we started viewing things like diet and exercise as a part of a well being treatment much like how we might take our medication. Today I'm here with Charlie Peel, who is a health writer from Neurology Academy to talk a little bit about the paper she has written on called ‘disease modifying lifestyle in MS’. Welcome, Charlie.
Charlie:
Thanks for having me.
Helena:
To start off what would you say is disease modifying lifestyle in MS because it's an interesting concept that I find
Charlie:
Yes I like it as a phrase because we're so familiar with disease modifying treatment as kind of the best possible way of treating MS. And I think for a long time we thought of lifestyle, things like physical activity or sleep or how we manage stress as being sort of helpful management tools for certain symptoms. We haven't always understood or even kind of considered the fact that actually by making lifestyle changes, we can have an impact on our brain health and therefore on how well we're managing cognitively on our brain volume, which we know in in MS can get smaller, much more quickly. And also on things like the number of relapses that we have, or even our entire disease trajectory, which I don't really like that term, but essentially how our condition changes over time, how quickly it changes over time, how quickly impacts the way that we are experiencing it. And I think lately, there's been more research, but also a better ability to pull together all the different pieces of research into a clearer picture. So we now know that a lot of these lifestyle changes have a real meaningful impact on our brain health, and on disease progression. I can give you a couple of examples if you would like. So we know that stopping smoking immediately changes the rate of motor disability. So our movement, our arm ability, there's evidence that regularly exercising or taking part in physical activity can impact your relapse rate. We know that your brain health and your brain volume can be maintained better through things like good quality sleep and exercise. And we know that we can also have a massive impact on what we call, comorbidities, essentially other conditions that we can have alongside MS, whether that's obesity, or diabetes, and things like that, we know that when we have MS and one of those conditions, it has a really big impact on treatment outcomes, on progression and on our quality of life. And we know that if we have good lifestyle, then that immediately has an impact on our cardiovascular health, on our blood sugar levels, that kind of thing, which is then going to reduce the likelihood of getting one of those other conditions, and therefore have a better impact on the MS itself as well.
Helena:
So it all kind of comes full circle, doesn't it?
Charlie:
It's like with anything, it's not like one thing that you do will change or MS or one element of managing this will have an impact. It's always all the little things. And it's the same with this kind of idea of a disease modifying lifestyle by making lots of different little changes that mount up over time, we can come at it from lots of different angles, so that brain health, that disease progression, that overall health to create a much better picture of health in each individual.
Helena:
So it's sort of more of a holistic approach, isn't it that people are talking about now?
Charlie:
Yeah, absolutely. And I think it's really lovely to see the, the NICE guidance got updated last year. And that's included a lot of this stuff in what they call a yearly comprehensive review, which everyone should be having. And it is looking at sleep, it is looking at physical activity, it is looking at stress management, because it is very much the more we support people as a whole person with all the different things that may or may not be MS related, the better their experience of their MS is and the better their quality of life is overall, which in turn then has a really big impact on how people experience their MS and their individual symptoms.
Helena:
No, that makes sense. We recently did a live stream where we had a clinical psychologist on and I was asking him, how would MS affect mood and things like that? And he sort of turned it on its head the question and sort of said, well, how does your mood affect your MS and it kind of takes back through this again, the it's not just one thing that is kind of it's all stacking up and becoming things that might then affect symptoms and things like that. So it's there's a lot of little building stones that we need to get right
Charlie:
There is and I think I both that can be overwhelming in some ways, because it means there's not just one thing yeah, um, but equally, it can be really positive because it means that there are a whole plethora of different one things that you can take on board that will have an impact and I love sleep in the same way that mood gave as an example, we can improve our sleep in so many different ways. Our sleep can be deteriorated by lots of different symptoms. But if we get better sleep that impacts those symptoms. We know those symptoms impact each other. So if you're thinking about mood and pain, perception and fatigue, all of these things, they all interrelate and so whilst it means that sort of one thing going a bit pear shaped can have a knock on. It also means one thing getting a bit better can have a knock on and I really like that kind of positive upward spiral approach that you can take with any of this stuff.
Helena:
I like the term of their positive upward spiral. It's like a positive domino effect.
Charlie:
Yeah, I think when you're managing any kind of long term condition, it's really up and down, no matter how well, you're controlling symptoms, no matter how well you're managing, it's always a bit like this, isn't it? And I think thinking of kind of, if I do this, it will immediately be better. Or if I do this, it will be immediately worse. They're not very helpful. But actually, it tends to be a slow downward curve or a slow upward curve on a daily basis with the odd things that will ping you up or down. And I think if you can think about lifestyle change, because it's life, there's, there's a lot of it. And we've got a long time to make these changes that you can think of them as little things that slowly either increase that curve or decrease that curve, it can feel a bit more manageable. I'm quite visual, I like that idea of kind of just slowly, upwards. And also, it also helps you to see that if you get a bad run of insomnia, it's a bit of a slow downward, but it's not putting you at the bottom, it's that downward curve, but then you can do other things to reverse. And I think maybe that's a more positive way of thinking about it, too.
Helena:
So how would this be implemented for people with MS. Do you think then?
Charlie:
So it's really interesting, isn't it because we can often think of lifestyle as that individualistic? Well, it's up to you, it's all on you. And I think that's really unhelpful, partly because our society feels entirely set up against positive lifestyle choices, really, in terms of, you know, the ease of accessing kind of less nutritious food and the kind of movement towards lots more cars and stuff, it's harder to walk or cycle places, I think there's a lot of that. I also think there is a lot of information, which can also be missed information. I think that there is a real need for there to be kind of a collaborative effort across all aspects of society. And if we think about MS, that's the person living with MS. And it's their healthcare professionals, but it's also our policy providers. So we mentioned that NICE put it into place that this needs to be taught with about, it's also our governments to be making better choices across society. So it's, there's loads of different levels. But I suppose just at a really basic level, if you're living with MS, there are things that you can do on a day to day basis. But if your symptoms aren't being well managed, that's going to make it a lot harder to make those lifestyle choices. So working with your healthcare professionals to get your symptoms under control, whether that's with medication, or therapies, or kind of a lovely combined approach.. might give you the ability to then make those lifestyle changes more easily, which in turn might mean that later on, you can come off these medications or reduce those medications. And again, that's not linear either. But we talk a lot now about something called supported self management, which is essentially talking about this partnership approach across the person living with the condition and the healthcare professional. And it might mean access to medications, it might mean access to therapy, it might mean information and being signposted to trusted sources, it might mean social prescribing, and being referred into services that aren't necessarily health services, but that you wouldn't perhaps be able to access if you weren't working in partnership with your healthcare professional. Equally, if you're someone that is incredibly motivated and loves to dive down rabbit holes of information, which is a bit like me, you might not need that much support from your healthcare professional. But I think it's really important to not put the onus of lifestyle change on any one individual. Because even at that very low level, actually, the way your household interacts and act is going to have an impact your friendship groups and their choices will impact that. So I don't think you can see positive lifestyle changes as kind of a tiny blob that you have to take on board all on your own. I think it's it has lots of different levels, both personal kind of alongside healthcare and that systemic level as well.
Helena:
Because like you said, it can sometimes when you read things about brain health, and there's so many different things like you know, your diet or exercise or of supplements and all these things. It's just like, oh my goodness me, how am I going to be able to deal with all of this myself and like navigate those fields? So I guess reaching out to your MS nurse would be a good place to start them?
Charlie:
Yeah, I think so. I think MS. Nurses are incredible, aren't they? And they're so good at seeing a whole person. So when again, when we talk about kind of comorbidities and managing your MS in conjunction with life stresses, you know, whether you've got young children or you're also in a carrying capacity, they're really good at seeing all of that and putting it together. And I think that also, I think it's the same with our allied health care professionals as well speech and language and physio and an OT’s there. They've talked about lifestyle maybe longer than has been popular.. it's come to a four hasn't it over the last few years. But I think these sorts of understanding that sleep is important understanding that your physical activity that your relationships will impact you. That's been understood, I think by our nurses and our therapists for longer than has been sort of splashed about on the media and things. And I think they're really, really good at helping you to identify your own goals, and what is going to make the biggest impact to you now. Because I think as you say, there's so many things you can do. And there's so much information that it's just incredibly overwhelming. If you are going from sort of not really doing much lifestyle wise to then viewing all this information. I think there's a tendency to just go, nope, I can't do that. you just put it away. And so working with someone like your MS specialist, nurse, or health care coordinators, we have now health and wellbeing coordinators in a lot of primary care practices, who can be really good at this sort of just talking to you about what matters most. What's the thing that will add value to your life, and let's just work on that. So I know somebody who their mobility was they were actively mobile, they didn't need walking aids very often, but they had gotten your grandchildren. And they wanted to sit and play with their grandchildren. And they just didn't feel confident trying to get up and down off the floor. And that was their goal then was to be able to move enough that they could get up and down off the floor. And on the one hand that's like, oh, okay, well, physio exercises will let you do this. But because it was intrinsically tied to something that they valued, which was time with their grandchildren, they were able to do those physio exercises that half the time you get given. And two weeks later, you've sort of forgotten about they kept at it. And they did other things as well, because it was all feeding into this, I guess, connectivity, relational. Oh, and I think it is finding that thing that matters to you. And then finding the few changes that will directly relate to that, and then making that part of life. And then when that's part of your life anyway, you know, if you've gotten to the point where you can sit on the floor, maybe then you go, Ok, well, actually, I really, I really feel dreadful in the mornings and my sleeps not very good. What could I do then, and then you take another small thing that you can add in and it's incremental.
Helena:
I really liked that. I know a lot of personal trainers, they always talk about finding your why and about, it's very much like your wise to sit on the floor and play with your grandchildren. And then that's a great, great motivator, I think there's been a little bit of a shift recently, which I really love. And in the same way as if we would compare, I don't know I have a headache. So therefore I take a paracetamol - that's dealing with something that's going wrong at the moment, but I'm taking disease modifying drugs to sort of try and prolong how well I am for the longevity of time. And, and I think maybe trying to look at things like diet and exercise, because a lot of people have always seen it a little bit like punishment, you know, I have to eat healthier, because I've put on weight, or I'm getting really unfit. So therefore I'm going to have to go to the gym. And as soon as you start to see it that's like that enemy, that bad thing, then it's really hard to make it part of your daily life routine. But if you have something like I want to be able to sit on the floor and need to work on my physio to do this, then. and then like you say, make it part of your everyday routine. So maybe that's the first thing you do in the morning, you do your physio. And then you set you up for the day. I think that's but it's hard to sort of get into that way of thinking at the start, isn't it?
Charlie:
Yeah, I heard a lovely thing. It was during Covid actually, and it was it was I think it was on a podcast, people were talking about the difficulties of being home and all the things that we were having to do and juggle. And then they were recommending a simple choice of words, which can reframe things in your mind. And it was what you just said, then I have to go to the gym, I have to go out for a walk, I have to eat this, I have to not eat ice cream, which would be my personal end of the world if I couldn't eat ice cream. And they recommend changing it to: I choose to or I get to. So not, I have to go for a walk. But I get to go for a walk, I can go for a walk, my body can go for a walk, and I might not get very far. But I can go for that bit of a walk. And I'm going to choose to do that. And just that reframing turns it from being the enemy that you're having to tackle into the thing that is enabling you to live well. And I think the more we learn about lifestyle and it's linked to health and longevity and things, for me a lot of the time it feels like almost like depositing in a bank account. So at the moment I do experience pain and fatigue and things but they're reasonably under control. So I choose to do more walking things, knowing that that is going to help my health that the times when I'm not doing as well. And I think it's that kind of choosing to make good choices now. So that your quality of life for the foreseeable future is at a better level than it would otherwise be. And I think that's a nice way of looking at it as well. You're kind of almost investing in tomorrow.
Helena:
I like that. It's like putting a deposit into your health bank. One thing that really stuck with me, I did a podcast a few. I think it was a few years ago now with someone who were talking about mobility issues, and somebody who's had to start using a wheelchair. And she used to be really active. And she always used to find that people would say, Well, why would you want to go to the gym? Why would you want to do that. And then she said, you know, these people who are able bodied and been able to go to the gym, what a privilege it was for them to be able to do it when she couldn't do it. And I think that's maybe one thing that I try to, I like running. And I feel like having MS. It's a huge privilege for me to be able to do that. And once I actually start looking at it like that, especially when you're having a tough run, or it's horrible, you know, it's actually well, no, this is a privilege for me to be able to do this, then, then it just feels like a more positive thing to do. So I think you're right there, a lot of it is kind of just about the choice of words, what do you use for it.
Charlie:
And also, it doesn't have to be an absolute does it like I just said that no ice cream would be a deal breaker for me, I choose to eat healthily the majority of the time. But if I really fancy sitting down with a big bowl of ice cream, I am not going to not do that. Because ultimately on balance, something that's less good for me, but it's really good for my mood is probably just as good. As long as I'm not, you know, eating a pint every day. It's all right. And I think when you're talking about lifestyle, it is life. It's not the next week or the next month, and then it stops, it has to be sustainable. And it has to be joyful at the end of the day. And so if you're eating a diet, which feels punishing, then actually thinking about how to inject some flavourings and things that you love into that it's going to be really essential, otherwise, there's no way that you can maintain it. And equally, I think, talking about nutrition, which can be just a, you know, a ticking time bomb can't it feel so strongly. But just from a perspective of kind of preparing a meal from scratch. If you're trying to prepare quite a complex meal or something that takes sort of 25 minutes of preparation, and you're struggling with fatigue, you're not going to make it, whereas if you found a way to, I don't know, layer up two vegetables in the same steamer while bunging a piece of fish in an oven. And it took three minutes to do it. And then in 20 minutes, it will be done. You're far more likely to be able to replicate that on a number of days, aren't you? So I think it's also about being really realistic and honest about your own kind of abilities and goals and what will be the thing that will stop you from doing something and what would be enablers? What is going to help you to do there's more like keeping that steamer on the side all the time, for example.
Helena:
I think with food especially just keeping it quite simple. I'm a big fan of batch cooking of tips tend to do is sort of on a on a weekend and then I just chop bits up. And then I have a big batch of I don't know couscous and then I put random bits of things in that for my lunch. And it's just takes five minutes to do it then. And, but yeah, like you say, because sometimes you read these things and you think, Oh, it says eat the rainbow. And I need to have this and I need to have that. And it gets very expensive and very complicated. But it doesn't need to be that every single meal does it
Charlie:
No, absolutely. And learning the foods that you like that are really easy is good. So for me, I like to make sure there is something green on our plate, every meal. And my children, they don't like things like kale and spinach, which I love because you can boil, you know, boil a kettle bung it on the leaves, and two minutes later, you can eat it, but they will eat peas and broccoli. So those are really quick to cook as well. And if we just always have some frozen peas and a floret of broccoli in the fridge, then that's a that's 10 minutes and you've got an extra veg there as well. So it's finding the things that work for you in your household. And then just finding ways to make them a bit more a bit more interesting…what you put with them and stuff
Helena:
It really is like one size doesn't fit all and I think that's why it can be tricky, but it also you just have to experiment a bit and see where you end up, don’t you?
Charlie:
I think so. And to not, try and do too much all at once, again. I think food can be it can just feel insurmountable can’t it and if you haven't got a huge budget and you haven't got much time and you haven't got much energy, it can feel like actually just bugging in a microwave meal or frozen dinner or something is going to be the easiest. So learning the vegetables that are cheap and cook quickly. Learning how to make you know one pot of I don't know risotto or paela or you know, something that just all goes into in a pan and then you just leave it, it's, it's learning the things that you enjoy eating that are also going to be as easy as that bugging the microwave meal in, so that it doesn't feel like you're having to constantly battle with your own mind about which one you're going to do.
Helena:
Let's talk about the big, I was gonna say the F word not, you know, the rude word. But fatigue. That's obviously something that's huge stopping you from a lot of these things. I mean, cooking and exercise... How if you are struggling with fatigue, because I think one of the things is exercise, we read a lot of things about, oh, if you exercise, your fatigue will get better. But you go out and exercise and then you come home and you feel really tired, especially if you haven't done any exercise in the past, how can we sort of go at this with some strategies in order to for fatigue, actually to be able to improve
Charlie:
Such a good question, and I think it can be, it can be really disheartening, actually, if you're struggling with fatigue, which we know is physical and emotional, isn't it. So it can be hard enough to say, right, I'm just going to make myself do this thing. And then your body's saying, I don't want to do it, and you're trying to do it anyway. And then afterwards, you're exhausted. But then actually, maybe it drops you backwards for a couple of weeks as well. And that was my experience in trying to.. I was reading, I'm a researcher, I was reading all this stuff about how exercise is the way to best manage fatigue. And every time I tried, I was I was being almost kind of laid low for two, three weeks afterwards. And I was getting so frustrated, because why was the research showing this for everyone else and not for me. And I learned the hard way for myself, and it will be different for every person. But I learned that I needed to build up really, really, really slowly. So you read exercise is good for fatigue. And you think right, that means, you know, something like a really brisk walk for a decent amount of time or going to the gym or, you know, you think high level of physical exertion, don't you? And actually, I think the word exercise is really unhelpful. Because if you are struggling with fatigue, or mobility, or just general impetus to want to do something, exercise isn't.. it doesn't feel tangible, it doesn't feel manageable. But there's also physical activity, which is a lovely word, which encompasses everything from, you know, standing on one leg at a traffic light to try and manage some balance all the way through to dancing in the kitchen with your kids in the evening. And then movement, which is one of my favourite words, which just implies trying to use your body more, you know, bending down to pick something up, or maybe trying to carry your groceries a little bit further or something. And again, all of these are a tailorable to your own functional ability and your own preferences. But I think for me thinking about fatigue and exercise, we just need to broaden that out a lot more to fatigue and movement and physical activity and just doing a little bit of something. And that something might look different for every person when they're starting. I interviewed a lovely lady called Joanne, the other week with MS. And she does this thing called Walk A Happy Mile. And there's a YouTube video of it. And, and she does it regularly. But she does it in her lounge because she doesn't feel confident going out and her balance is bad. So she does it holding on to something. And at the moment she can't do she doesn't do the whole mile she can't manage the miles. It's too fatiguing for her. But she does as much of it as she can on that given day. And she keeps coming back to it. And her goal. Sorry, that's my dog coughing, and her goal is to be able to complete the whole mind. On a good day. knowing that actually that might be on a Tuesday, she completes it one day, and then by the Friday, she doesn't complete it again. And so I think it's picking something that you enjoy so that even if you only manage a bit, you're still benefiting from it mood wise. Picking something that it doesn't matter how much of it you manage. So maybe one day you walk five metres, maybe another day, you go for 20 minutes, maybe one day, you can walk briskly for an hour but if you enjoy walking outside in the sunshine, it doesn't matter which one of those things it is. I think it's listening to your body. And if you're starting to experience more fatigue as the movement is going on rather than less it might be time to go home again. And I think also just taking time and being okay with it not you know you're not gonna move better for two days and then your fatigue is under control. I think it's taken me three years of just slowly bringing in more and more movement and physical activity. And now I would say exercise as well. But it's been a building up process. And three years now I can say that I feel that most of the time, I manage my fatigue with movement. But it isn't, it isn't do this now. And then it's better. And I think sometimes if you're comparing fatigue to medication, and even though we know studies have shown that actually, the efficacy of the medication, when you compare it to studies that show efficacy of exercise, it's much lower, but you may think you take that piece of medicine, and if it sits well with you do feel an impact quickly. Whereas when we're talking about something like exercise or physical activity, it's much more that long game. And I think there's no reason why you can't do both, when you can't take some medication, to help manage your fatigue, to give you enough energy that you can start to do some exercise or some activity. And then maybe over time, the weighting of those changes, maybe it's more exercise than medication, or maybe you can take away that medication eventually. But it doesn't have to be one or the other. And it doesn't have to be the same thing for everyone. And it definitely doesn't have to be the same thing every day, I would say.
Helena:
And I think it's really important for you as saying that it does take time, because I think, you know, if you go on, I don't know, Instagram, and you scroll through feeds. And you look at some of these people that like to hashtag them with MS. Warrior, you know, they're doing this and they are climbing this, and you kind of feel like, wow, why can't I do that, because this is never going to be me. But I mean, I used to be a total couch potato I was, you know, pretty, that's pre-diagnosis, just sat and watch TV was my, my favourite pastime, I just did not do anything like that. And it was a friend of mine that wanted to do a couch to 5k and I'd never run, you know, I was just like almost laughing at her. And then that just like the idea of running for 30 seconds was really horrible. But I think by the end of the programme, where we actually were jogging and doing things, that's when I suddenly realised hang on a second, I have much more energy, and it but it I mean, that's a good sort of three months worth of doing it before I actually noticed anything. And it was just like a happy side by-product that I didn't, I hadn't expected it, because I was fully sure that once I've completed that 5k I wasn't gonna run anymore. And yeah, that was gonna be it. But I'm still doing it just purely because that actually, that worked. And that would bring him back to what you were saying is like, for me, feeling like I'm investing into to my future. And now it's become longer than five K's and I'm still really enjoying it most days. But some days, it's really, really hard. And then you have to go back and sit on the sofa for a bit instead. And that's okay.
Charlie:
And I think it's also okay, that some days you don't really want to wake up, you're like, Oh, I didn't really feel like this. And I think that's when that that realisation that when you do it, you feel better kicks in. Yeah, for me, the only time I have in my day to go for a decent walk is at seven o'clock in the morning before my kids are really kind of excited to be doing things. And getting out of bed at that time. If you have had a bad night's sleep, or if your fatigued, it feels almost insurmountable. But I always know that no matter how hard it is not going will make the rest of the day that much harder. Whereas if I can push myself through that really hard bit, by the time I come back from my walk, I feel like a better version of myself. I'm a better parent, I work better when I'm working. And it is that kind of sometimes you do have to have a little battle with yourself. And it helps to have had some good experiences in order to have that battle, doesn't it?
Helena:
Definitely. I feel like that's it's finding that level of pushing but not pushing too much. It's really tricky. And it probably takes a good few years before you kind of get to know your body well enough when it comes to things like movements, because I've certainly, I'm very much like that if I don't do some sort of exercise in the morning. And then that could be just stretching on some days, you know, it doesn't always have to be sort of something that's really like run or lifting stuff. But if I don't do anything, I tend to just want to sit the rest of the day and my fatigue is so bad by the time of lunch, I want to sleep, you know. And so I try to kind of think about that when I'm laying there in bed going I don't want to get up and I'm like well this then I'm going to just stay like this the whole day. And I actually have stuff to get on with so. But yeah, it's hard to find that motivation. What do you think about… I see this quite a lot of people sort of, you know, we a lot of people post online and there's exercise journals and things like that, about keeping accountable. Because one story that I loved, and it made me think of it when you were saying about the lady who was walking in her house. We had a lady a few years back who took part in our Miles for MS challenge. And her thing was that she took her walker and she walked up and down the aisle of a local supermarket because it was nice and smooth, she wasn't worried about falling over, she went at a time when he wasn't so busy. And she was doing this every day during the month. And towards the end, you know, the staff came and they had like a finish line. And it was it was lovely. It was really nice. But I think because she always used to go and put a little post in our Facebook groups…today I walk this to their did that. And she got lots of encouragement from other people. She felt that that was sort of keeping her accountable for what she was doing. And I do a little bit the same. I sort of use my Instagram as a journal where I put that on what I've done, and it feels like, on those days when I really don't want to do it. I'm still like, well, I want to put something in there to keep myself accountable. But I tried to be honest, on the days where it's like really rubbish as well. Do you think that that can sort of motivate people as well?
Charlie:
I think it really depends on the type of person you are. I don't know if you've heard of Gretchen Reubens. She's a research writer. And she wrote a book a while ago called The Four Tendencies, which is sort of a personality type test. It looks at what you're more likely to be motivated by and I think I personally am not that motivated by accountability. But I know that there are times when it does help. But I have a friend who really wanted to improve her physical health. And she loves walking, but she just couldn't bring herself to go regularly. And so we made an agreement that three mornings a week we would meet we live reasonably close together. And we would meet at a kind of a five minute walking distance from each of us and we would go for a walk together. And I thought that it was much more for her this kind of level of accountability because we knew.. it's early in the morning we meet at seven, which means you can't decide and phone and say actually, I don't really want to come because no one's awake! You know, you're literally getting out of bed pulling on your trousers and going. And so for her it was really helpful because it was making her go. But actually I'm learning because we've now been doing it for over a year and a half and I'm learning it's actually really important for me, because if I'm in a patch of time where either my mood is lower, or my pain is higher, I will still go for a walk. I know I will, but it might be a shorter walk. And it might be a bit later in the day. So I'm not getting that early morning light to help with my sleep and all that kind of thing. But it makes me go and do the whole hour of walking. And sometimes we walk very slowly. And sometimes we walk faster. But I'm noticing that even for me, who doesn't think accountability is helpful. It really is at times when you just don't feel like doing it. And I know social media can be really helpful for some people, I don't use it personally, I don't find it good for my mental health. But I think whatever level of checking in you need is a good thing. And I also think there's something about a social connection, we know how important social connection is anyway. But if you can sort of I call it stacking, it's not my own phrase. It's coined by Katie Bowman, she's a bio mechanist. And I love her. But she talks about stacking your life, so that you're more likely to do something. And if you can stack, for example, your exercise with getting sunlight in the morning to help your sleep with seeing a friend. So you're getting that social connection, you're doing three things in that 1 x 20 minute period. And it's gonna make you more likely to keep doing..say, it is a walk or a run, it's going to make you more likely to do that if you're also getting a mood boost from the times with a friend and getting a boost in your sleep from the time spent outdoors. And so it's kind of can be accumulative, I think so I think accountability is good, possibly as a motivator. But also because maybe through that accountability, you're probably adding a level of social connection, which is also helping your quality of life feel better.
Helena:
That makes a lot of sense. I do think what he was saying about walking together with someone, I used to have a friend who I used to walk with a lot and I really miss those walks just because you put the world to right when you're walking, I don't know there's something about those endorphins flying and then you get talking and then once you come home, you just felt really kind of like that was good.
Charlie:
Yes I think that's right.
Helena:
So your paper is all about the sort of the importance of engaged patient for this to work. And how can we help people to feel engaged for modifying lifestyle change without shaming them for current habits and choices? I mean, this is a tricky one, isn't it? Because again, especially if you haven't been looking into these things, and it's like, well, smoking is a good example. My mum used to be a big smoker. If she went to any doctor, they were the first thing that they would say would be: stop smoking. And she would just stop going to see the doctor, you know, because she was just so worried about being shamed. So if she had a backache, she wouldn't go because she was just didn't want them to bring up the smoking issues. So I feel like we want to motivate people to do this. But how can we do it in a way that isn't shaming? Because I don't know, I don't think we're talking about accountability, I don't think shaming will ever work as a way to, to get people to stick to a healthy lifestyle.
Charlie:
No. And actually, I think, I think shame as an emotion is an incredibly unhelpful and quite toxic emotion. And it should never be a motivator ever. I think a lot of what we've already said today is kind of irrelevant here. I think noticing that our society kind of sets us up for a fail, a lot of the time, it is important to know, I think remembering that it's not, it's not okay to expect someone to do this on their own and in isolation is really important. I think it's important to remember that the people around you and the lifestyle choices they make will have a big impact on your choices. And that actually, sometimes, it can be almost impossible to feel like you can make a choice in a different direction, if all of your family or all of your friends are making that choice. And I think smoking is a really good example. Not that necessarily people choose to smoke to fit in. But I think if you are from a kind of a social group, where it's just so normal, and it's synonymous with maybe social connection, or having a nice time, or going out and letting your hair down or whatever, then you're not just asking someone to stop a habit, which is unhealthy. You're asking them to sever the connection that has with all of those good feelings around connectivity and belonging. So I think it's so important to see all of this in, in so much more of a well rounded way than just one thing in isolation. I think that having healthcare professionals supporting self management can be good here, because you can have that conversation of what's most important to you. But you could also have, what would be easiest, because when you know, we've talked about values, and it's so important to do something that is values based, but sometimes you just need a quick win. And if something that would be really easy for you to do is to drink some more water, and you're a bit competitive, you know, maybe get one of those bottles with the lines on the side so that you know that you're drinking that much. Or maybe you'd like something beautiful, and you could buy a really lovely glass, I'm gonna use this glass, and that will make me drink more water. And I think noticing a little thing, and realising that has had an impact positively on your lifestyle..Well, it encourages you to want to make another one. It's not to say any of your less positive lifestyle choices are, are bad or wrong, you shouldn't be doing them. It's saying well, what can we change that does feel comfortable for you? What can we change that would be meaningful for you or would be helpful for you. And actually, I think that it sort of is that positive upward spiral. Again, if you notice that, when you get sunlight in the morning, you know, you take your cup of tea outside in the garden, you won't work, you don't want to go for a walk, you don't want to do any of this kind of exercise or food rubbish. But you'll stand in the garden for your cup of tea. Notice that that helps your sleep. And by your sleeping better, you notice your mood is a bit lifted. So you kind of want to go out a little bit more, your fatigue is a little bit lower. So actually, you can park a little bit further away from the cafe where you're meeting a friend. And you can walk a bit further. You just notice it's making a few small incremental changes in other areas of your life, which isn't necessarily saying, I'm going to eat this way, or I'm going to do this much every week, you're not necessarily choosing to identify as someone that you're not. But you're making these little changes that don't feel at odds with who you are or how you want to live, which are starting to have a benefit. And that might slowly change your mind about some of the other things that you always thought weren't things you wanted to change. And if that never happens, I think that's okay, as well because any one change is helping anyone thing that you do is making a difference whether that's journaling to help with your emotional management or making a quick to do list before you go to bed so that your brain isn't churning all night. Or I don't know, switching one item of processed food for something that is similar but doesn't have as much kind of sugar or salt in it. It's the little things I think and they do add up and I think if you if you can start to enjoy one or two little things however small they are not because you think that how you were living before was wrong. But because you're wanting how you live tomorrow to be better. It's slowly can turn things around.
Helena:
Can I ask you when you were writing the paper was there anything that sort of surprised you or that you weren't expecting to find out when you were doing the research around it?
Charlie:
I think one of the… I've been a bit of a boffin around sleep for a while, and I love I love how good sleep is, I think one of the things in the kind of area, the research on sleep that I did that surprised me was around autophagy. And it's linked to health autophagy is my children affectionately call it the brain's toilet flush, it's not just your brain, it's your central nervous system its the act of getting rid of toxins and things in your cells. But a lot of it happens in your brain and your central nervous system. And when you sleep in a really good deep sleep, your brain kind of shrinks down a little bit to make space for around the outside. And your body sort of flushes all of the yuck out of your brain out of your central nervous system. And if you don't get good quality sleep, then the amount of time available for autophagy goes down. And some of those toxins that build up are linked to things like Alzheimer's, so it's those kind of things. So we really want this to happen. But what I didn't realise is that there are some studies that are looking at how we can push the body into autophagy as a treatment form for neurodegenerative diseases of all kinds. So it's really early ideas, but I think it just shows the power of a good night's sleep, if we're thinking about a function of sleep as a possible treatment for things like MS and Parkinson's. That was really interesting to me. And the other one that surprised me, I didn't really want to find out about but you can't unknow what you know, was around alcohol. So there's not much research into alcohol and MS. But there is a growing amount of research into alcohol and its effect on the body and brain generally. And one of the one of the pieces of evidence that does translate across to MS is that drinking alcohol and unfortunately, it's not even excessive drinking of alcohol, which is sad because I like a glass of wine. But alcoholic intake has an impact on brain volume. So how much of your brain cells you keep for how long? And so one of the things that I did put in the paper is that whilst this isn't, it's not conducive that if you drink alcohol, and you have MS, that's going to increase your disease progression. Of course, that can't be said. And there's no evidence of that. But what we can say is that when we have MS, our brain volume reduces more quickly than in other people, that when we drink alcohol, our brain volume reduces more quickly than in people who don't drink. And so if you put these together, it suggests that that is going to speed up that process potentially of brain volume reduction, and that, therefore, where possible, maybe don't drink so much. Or if you don't really like it that much. Maybe think about just cutting it altogether. It depends if having a drink is really meaningful to you and helps your mood and your social connection and stuff. You know, it's not reasonable to say you should quit alcohol. But just being aware of the information and making choices around.. Okay, well, how much am I okay to drink? Then how often do I want to drink? Do I even care about drinking? Just having those conversations with yourself? Once you know this sort of information? I think it's valuable. And yeah, I suspect there will be more research coming out around alcohol in the same way that it has around smoking. I think the MS register will be a good place to find information about that a lot of the evidence we have around MS and smoking came out through the MS register. So really encourage people who have MS to sign up for that it's a brilliant way of contributing to research that isn't too impactful on your life.
Helena:
Yes, we're going to be talking to the MS register about smoking in MS in a future podcast, actually, because we enjoyed reading what was come out, come out of there. And yes, obviously go and sign up to the MS register. It's a great organisation. I come from Sweden, and they already have sort of a big register for people that have MS, you end up in a register straightaway there. And it's just the way that you can sort of look at things like this makes it so much easier. So but because we don't get signed up automatically in the UK, I think organisations such as the MS register are really important for this type of research to be done, isn't it?
Helena:
Yes, absolutely. I mean, we know that epidemiological studies so studies that are just looking (I say just) that are looking at people over time have their flaws because you can't account for all the different factors that are affecting things but I think they are so important for just looking at those big pictures, picking up on threads, and then being able to kind of target where you dive in research wise into different things. So yeah, really, really meaningful.
Helena:
Looking at your paper and sort of what we've been talking about today at for my final question, if there was just one thing that you should start by looking at, what would be your tip? I mean, obviously, it would be different from person to person, but the overall thing, what would be your main tips for people to start looking at?
Charlie:
It's a really lovely question. And like you say, it's so individual, isn't it? And actually, none of the none of the areas of lifestyle change happen in isolation, either. So more physical activity improves your sleep, for example, your nutrition will affect how well you can move it all kind of interrelate, anyway. Yeah, I would say that the probably one of the least focused on ones which I think is becoming increasingly important is that of relationships and social connection, which I didn't really cover in the paper, actually. But always keep in mind that actually the, the relationships you have actually have a huge impact on all these other things. But for me, personally, sleep is, that's, that's the big, big one. Because for my own experience, sorting out my sleep, which took just years to do, had the biggest impact overall on my ability to then do other things. So if you can address sleep quality, and there's lots of information out there, there's great charities like the sleep charity, there's loads and loads of fantastic podcasts, you might have done one yourself. But there's some great ones on Dr. Rangan Chatterjee’s channel Feel Better Live More. And the model health show there's, there's like about eight kind of in depth podcasts there. But a bit like with lifestyle with sleep, there's loads and loads of things you can do. So you can start with just one or two things to slowly tweak the quality of your sleep. But one improved night's sleep can have a huge impact on your mood, your cognition, your fatigue, your pain to the point where if you sleep deprived, perfectly healthy adults, within about three days, they will start to experience cognitive fog, pain, fatigue, mood disruption. And so to address or to help manage common symptoms in MS. Getting a good night's sleep might be a way of alleviating an awful lot of those or reducing their severity, which then in turn, might give you the space, the mental space, the emotional space, to think that you can manage other things like getting a bit more movement or like changing your diet a little bit. I think it makes a big difference in how you interact with people, you know, your level of irritability, your level of compassion with yourself. I think if you've had poor sleep, you're just not patient with anyone, including yourself and you just get frustrated and ratty. It's harder to accept where you're at all these things. And whilst that might seem like a, a bit of a distant thing for people who are experiencing insomnia or for whom kind of bladder issues are getting you up constantly, but there are always so many things you can do to just improve the quality of sleep for however long you're getting it. There's a great.. I did an interview with Dr. Agne on her Bee Well with MS podcast actually, which is specifically around sleeping and MS. So I would send people over there as well, if that's one that they're willing to look at.
Helena:
We can link to that in the show notes as well. Dr Agne has been a guest on the podcast, and she's great.
Charlie:
I think that we address a lot of the reasons why sleep can be hard to obtain, if you have MS and a little bit more about the science of why it's so important. But for me sleep is the one that if mastered, could give you a gateway into making lots of other changes more easily.
Helena:
Fantastic. Well, I'm hoping people have got some ideas from listening to this. And I certainly know that sleep is something I need to try to sort out because I quite often you end up relying on coffee and some sugary snacks when you are feeling tired. And that's not good, is it?
Charlie:
Well, you have to do what you need to do on a day to day basis. And caffeine is definitely one of my best friends too. But any way that we can improve our resilience during the day through sleep is a good thing to do, isn't it?
Helena:
Thank you so much. Well, it's been very, very, very interesting. And I will link to all the bits that you talked about in the show notes so people can do some more research Thank you for coming.
Charlie:
Thank you so much. It's been lovely chatting to you.
Helena:
Now if this was a commercial podcast here is where there would be an advert. But we're a charity. So we don't do that. So instead, we'd like to take this opportunity to tell you about our fantastic resources for people with MS.
Nick:
Yeah, so you can head to our website, that's MS trust org.uk, where you can find loads of really, really helpful information and resources for anyone affected by MS. So do head over to that website and hit the MS information and support tab. And on there, there's a section dedicated to health and well being so you can find out lots more information about some of the things that we're talking about today. And lots of other really helpful information too
Helena:
and now let's have a listen to Steven story.
Nick:
Hi, welcome back. And we're joined by Steven now he's part of our Fundraising team. Hey, Steven.
Steven:
Hello. How are you doing?
Nick
Good. How are you?
Steven:
Very good, mate. All the better for seeing you.
Nick
Yeah, absolutely. Feeling feeling's mutual. For our listeners, could you introduce yourself? Tell us about yourself?
Steven:
Yeah. I'm Steven and part of the Fundraising team here at the MS. Trust. I've got MS myself. I was diagnosed in 2019. And I've been involved with a couple of fundraisers in the past myself, I suppose. Yeah. Just felt like the right time to join the team and do it on a on a proper full time basis, I guess.
Nick:
Yeah, definitely. I know. We're all absolutely thrilled to have you even brilliant that you've joined the team. So you said you know you've been involved with a few fundraisers? Yeah. Can you tell us about Miles for MS that you're now involved with?
Steven:
Yeah. So Miles for MS is designed to be a sort of inclusive Fundraising event where anyone in the community or affected by MS can get involved. And the emphasis is around inclusivity. So it's all about your distance, your way, trying to make it as accessible as humanly possible, as we all know, and people with MS like myself, will have varying abilities in terms of what they can physically manage in a day, bearing in mind, physical disability or fatigue. So there's no sort of particular challenges you set your challenge based on, you know, how you are feeling and what you feel that you are capable of. Either way, it's all gonna be contributing, and it's all going to be a part of this amazing course. And one of the great things about it is that it's a real community led event. So Miles for MS attendees, seems really get involved and really support each other throughout the process, which is one of the reasons that I really loved it as an event. And there's a real sort of community feel about it, everyone sort of beating each other up and egging each other on, it was great. And so whatever you decide to do is your challenge. You do it your way, your distance, and that's what it's all about.
Nick:
Yeah, and I love that I love how accessible it is. Because you see a lot of challenges out there, don't you sort of exercise challenges or, you know, like, you know, really sort of extreme things that people are doing running x amount of marathons and this stuff and actually Yeah, exactly. You know, for a lot of people.
Steven:
Absolutely. I mean, I used to be a runner myself, I used to, I've done half marathons for charity in the past, I'm physically not able to do that anymore. I'm working my way back there. But I know I physically couldn't manage that because my, my fatigue and my nerve pain would just be too much. So as much as I would love to get involved in that I know I physically am not capable at my current circumstances. But the emphasis of this year in particular is doing 30 days of whatever you set yourself as a challenge over the 30 days of June celebrate the 30th anniversary of the MS trust that is, you know, supporting people living with them that’s the whole point of this year.
Nick:
Yeah, amazing. You said you've done it before have you Miles for MS. Not organising it but taking part in it
Steven:
It's interesting seeing it from the other side. And, yeah, I was involved in 2021. So myself and other people that I knew within the MS community persuaded me to get involved. And we all decided to do one big day of getting involved with miles for MS. So I think collectively between our youth organisation we walked like 2 million steps in one day I personally did. What did I do 35 36,000 steps in one day, we basically went on a hike. Me and my partner and the dog went hiking through the hills of Yorkshire, for the day took about nine to 10 hours. It was gruelling, I was absolutely battered. But it was so worth it. And I loved it. And just everyone's sharing their photos and their experiences and keeping each other motivating, keeping going was just phenomenal. I love that. I've never felt so tapped into the community before. I wish from the reasons I was so excited to get involved with it on the other side.
Nick:
Yeah, definitely. That sounds like an amazing challenge. And yeah, it must be so good. Everyone coming together in that way. And as part of that group, I mean, I'm intrigued. Were they all people living with MS themselves?
Steven:
Yeah, that's, that's how we all met. It was just a group of young people through Facebook, who had all met through their unified vision of all of us had MS. So I think we would joke that it was the best worst club to be part of it. The circumstances that brought us together wasn't great. But we were so happy that we found each other. And I've made friends for life through the MS community, that it's completely changed my life and the people that I've met along the way. And some are more my best friends now. So yeah, no, no regrets there.
Nick:
Yeah, I can imagine if you have those shared lived experiences that can be really powerful to make those connections with people. I can imagine that for sure. Yeah, absolutely. Yeah, yeah, definitely. And I'm thinking about this year for miles for MS. Have you got anything in mind that you're doing personally at all?
Steven:
Yeah, so I'm gonna get involved, you know, put my money where my mouth is. So I will be doing the challenge as well. So as I mentioned before, I used to be very active, but since my diagnosis has been a bit of a struggle, and over the past year in particular, I've mostly been using walking aids. But I've progressively through physio, and sort of like nerve pain relief, been able to use that less and less. So I've been sort of working my way back up fitness wise. So I'm going to try and do 10,000 steps every day. So just got myself a new pedometer. And I'm going to be looking to do 300,000 steps over the course of the over the month. So we'll see how that goes.
Nick:
Amazing. And no doubt though, you'll be doing lots of work behind the scenes as well. I can imagine it's no small task. Is it? So? Yeah, yeah, brilliant stuff. And of course, you've also got a very young child as well that we congratulated.
Steven:
Thank you very much. Yeah, she's six weeks old now. So lots of walking around with her on my chest and dancing around in the living room. So maybe that'll help me get my steps in.
Nick:
Yeah, definitely. You have to pop some pictures online.
Steven:
Absolutely. Yeah. Nine times out of 10 would be me, just with the baby hanging off my chest.
Nick:
Yeah, yeah. And huge congratulations again. But same you so much for anyone listening to this? Who thinks, you know what, actually, not too sure about Miles for MS. What would you say? Well, why should people get involved with it?
Steven:
I mean, why not? It's, it's one of those were like, certainly from a personal perspective. MS can be such an isolating condition at the best of times. And I think over the last few years, we've all learned how detrimental isolation can be to not only mental but physical health. And I think an event like this where it's really community led, and you really feel in touch with other people who are in similar circumstances, you and understand what you're going through, it can make more of a difference than I could possibly put into words, just to feel like you've got other people going through the same thing that you are, who understand, and who’ve got your back. And I've never encountered anyone in the community who has behaved otherwise. There's just some truly amazing people in the MS community. And I encourage anyone who is feeling isolated or alone, to get involved with something that is going to push them into the MS community into to interact with other people with the condition. There are some incredible, incredible people out there. And, you know, maybe we'll find your next best friend. And then obviously, the funds raised through this event is directly going towards helping people living with MS. You know, through the MS services through training, and that's nurses. And I myself always lived in areas where there was a severe lack of MS nurses I know what impact that can have on someone with MS. And so your efforts could literally go towards helping you and people like you directly.
Nick:
Yeah, amazing. I love that community feel that bringing people together about the challenge as well, it sounds great. And yes, you say that isolation is so difficult, isn't it? And actually, if, if there's a way that you can interact with that community, just knowing that communities there together, is so powerful. I was just wondering if you had some kind of ideas for anyone listening who would like to get involved for some sort of ideas for the different challenges that they could do?
Steven:
Absolutely, I mean, again, trying to be aware of everyone's different ability levels, whether you are walking, if you're in a wheelchair, it doesn't matter. Just do go at your pace, your distance, you know, even if it's just doing a couple of laps around your garden, we saw plenty of people doing that kind of thing, during the pandemic. It's absolutely valid. Whatever you do, whatever you can contribute is valid, you know, walking your dog, taking your kids to school, maybe doing some physio or an aerobics class at home, because that's something that is already important for your physical health, even if it's just trying to get into a rhythm of getting into some lifestyle changes that are going to be helpful for you in the long term. I know personally, that's why I'm setting myself this challenge is, I want to get back into that sort of frame, I know that it's hard, and overcoming those barriers of pain and fatigue can be really difficult sometimes. But I also know when I do go out and do it, I feel so much better for it more often than not. So it's about sort of combating those mental barriers. And but there's so many things you could do with us, cycling, aerobics, whatever feels right to you, honestly. It will be valid, and it will be accepted and celebrated within the community. I promise you that.
Nick:
Yeah, brilliant. I love how open ended you can go with this one. It's, it's really. And it's not just people living with MS who can get involved as well
Steven:
Anyone who's affected by it, you know, family members, we have plenty of people signing up who are doing it in either a memory of someone or in support of someone that they love. So, we've seen some incredible challenges out there. I know there's one person who's planning to do 100,000 kilometres, they're ultra marathon runner. I think their sister has MS. And I was just, I was dumbfounded to read that and to read their story. It was incredible. There's so many incredible stories. And we have a Facebook group as well, which if you're intending to join, you can join our Facebook group. And there's loads of stories and challenges and ideas being shared there. But obviously, the resources that we can share as well on our website, which you can probably see just above me there. And there's loads of ideas there as well. And but feel free to get in touch and we will help you and support you in any way we can.
Nick:
Brilliant. Yeah. Is that the best way to get involved would you say to jump on the website or the Facebook groups and find this?
Steven:
Absolutely. Absolutely. Yeah, the website, the Facebook group. Absolutely. The best resources.
Nick:
Yeah, amazing. Well, thank you so much, Steve. And I think it's got me thinking about what I'm going to try and do for this year.
Steven:
I look forward to hearing your plans, Nick!
Nick:
Don't sign me up for anything too mad. Not quite sure I'd be up to that level anytime soon. But yeah, is there anything else just before we go? Is there anything you'd like to say just to those who are thinking about getting involved?
Steven:
I'd say what have you got to lose? It's one of those give it a try. You know, see how you get on even if you don't feel like you know, you're in a position where you know what your limitations are? And you know what challenges that yourself.. start slow you've got a whole month to feel it out and see how you're doing. So it could really be a game changer. It certainly was for me, I found it to be quite a life changing experience not to overestimate it and I hope that it can be the same for other people. And but honestly give it a go there's so many amazing people out there with MS and affected by MS. They’ll support you..they're just waiting out there and we'll be with you the whole way. So we'd love to see you get involved.
Nick:
Amazing. You heard it here. Its life changing – miles for MS. How can you not get in have now Right? Yeah. Thank you so much, Stephen we’ll leave you to go and get lots to do for the event? And yeah, yeah, thank you so much and wishing everyone the best of luck
Steven:
Take care everyone, look after yourselves.
Nick:
There we go, we are back.
Helena:
Brilliant, I have to say this, it was very interesting listening to both of them. And I really really enjoyed talking to Charlie, I felt like and especially at coming off after the last podcast where Agne gave us so much information, it was a little bit what you were saying before about, you know, getting lots of building stones. But how do we start? How do we start to build this? I don't know, I was gonna say healthy house either. And I feel like until that level of actually thinking, Okay, I'm gonna pick one thing. Like the lady that she mentioned, who wanted to play with her kids. She wanted to do that with her grandchildren. And that was sort of, I think it's, it's about finding that one thing that can motivate you to make it a part of your life rather than, you know, every January, everyone is just trying to get you to change everything it's supposed to be you're supposed to stop drinking, you're supposed to lose all the Christmas weight and you're supposed to take up I don't know, running after weekend, so many people just go, No, I can't do it, this is too much. You really have to sort of, I don't know, set realistic expectations on these things. I think
Nick:
That's the kind of yo yo thing, isn't it. And I know, I've certainly done that before in my life as far as like, he kind of you try and start some of these habits. And you know, you only get so far, then you go back, and you start them again. And it's really, really difficult, isn't it? So I think having that like overarching goal like Charlie was talking about, and one that, you know, it's really important to you and your life, like you know, playing with your kids, being there for your family. You know, whatever it is something that's really, really important to you. And then choosing to have that healthier lifestyle, when you can, is really important to help you reach that goal and be able to, to be there and be around those people. It's really, really, really, really interesting, isn't it? It makes you think about ways of changing your mindset, doesn't it?
Helena:
Yeah. Because I think quite a lot of the time, you know, if you join slimming clubs and things like that, it's always like, Oh, would you go wait, but what, then what happens then could be Charlie, so this is lifestyle, and that means life, you know, so it's kind of something that you want to make changes for the rest of your life, and therefore you need to be sure that it's something that you can also enjoy for the rest of your life. I mean, imagine if we would just eat I don't know, Kale, you might be able to eat Kale for a day, maybe for a week. But would you be able to do for the rest of your life? Probably not.
Nick:
That's it, isn't it? And it's so important, isn't it to have that balance as well, isn't it and work towards your goals have that balance as well, when you can, you know when it's the right time for you not to get discouraged when you know you can't do those things to 100%. And just to keep having that resilience to keep coming back. Because that's your goal is that lifestyle as opposed to oh, right, I'm gonna drop this many pounds, or I'm going to be able to meditate for this long, or whatever. And you beat yourself up into being able to get to the sort of short term things that you know, ultimately, what Charlie was talking about, wasn't it? Is that actually that sort of behaviour changes in that overarching lifestyle?
Helena:
Yeah. And I think like, the most important thing that I took away from is that you don't need a whole life overhaul at once you know, just find one thing. So we mentioned the you know, the lady wanted to turn or that you know, to miles for MS. Just walking with her walker in the supermarket for a mile. Oh, maybe it is taking up mindfulness. This is something that I'm thinking that I want to do during next month. Alongside of miles for MS. I am taking part from the miles for MS by proxy, because my nine year old son he is doing it again. And I also bring him back to what Charlie was saying about social connections. There's like nothing that I enjoy more than running with my son because we have so much fun that the going he even wrote a song about running I might let that song plays out on their own at the end of the episode today, but I just think you know, it's not just about exercise, so you need to do that then you need to do that. It's more about what you can do. And then at the end of the day when you finish something instead of just thinking oh, I didn't do that I didn't reach my step goal today. So well maybe I cooked a healthy meal and maybe that was a good thing. Or maybe I saw a friend today and I really enjoyed myself but sort of… I read somewhere. It's like you know, not worrying the negative, but focus on the positive. And I think that's part of making those small steps and changes.
Nick:
Yeah, definitely. And I love what you're saying there about the social connection. And, you know, Steven was talking about there, you know, the MS community, how you can get involved with miles for MS. And, and how he, you know, when he was first doing it, how he felt that sort of sense of connection with people with other people, you know, who, who felt were in a similar position to what he was in. And you don't have to be going out and seeing people you know, you can be sharing your journey for miles for MS on online and connecting with people in that way to say yes, so important. And I've definitely, you know, come away from this feeling a little bit more inspired. You know, I know that, you know, no one out there is doing all of these things all the time, or that no one out there is doing like living the you know, really, you know, really, really healthy diet, you know, just eating Kale as you say, exercising all day, every day. Also, finding time to meditate, mindfulness sleep well. You know, just live in that complete way of health that can't exist. And also, you know, look after the kids go to work, look after your parent, whatever else you need to do, like it can't happen surely
Helena:
Get a good night's sleep in on all that as well.
Nick:
Yeah, absolutely. But yeah, I have to say I'm definitely inspired just to make those small changes just just make a small change. And it could have those big impacts. So if you do want to get involved in Miles for MS, any challenge that you like, as Steven was saying, something to get you moving this summer, and it can be completely your way so it can be wheal, walk, scoot, run, cycle, ebike, swim, cross training, anything goes.. it really is for everybody, you get to say how far you want to go, you get to set your own challenge.. you're in charge of this. So just make sure the main thing is that you have fun, enjoy your achievements and if you want to you can share them with others and just doing that not only you know might you also get those benefits of connection and healthy lifestyle but also you'll be making a huge difference to people living with MS. So you can go ahead and sign up we'll put the link in the show notes but also it's MS trust org.uk/miles
Helena:
And there is a Facebook group set up specially for it as well which we will share in the show notes as well so then you can see that what we were talking a little bit about that kind of keeping yourself accountable is a good way of maybe motivating yourself but you know what? You don't even have to move if you don’t want to..last year, Simon in the enquirer line. He listened to 31 Miles Davis albums see miles for MS. You know, to get a little bit in a different direction and you review them all these albums. Or maybe you could set a sleep challenge, I don't know. It's because you can just be as creative as you as you want to. And if you're already taking part you know, give us a shout and tell us what you do. What you are planning on doing we'd love to hear from you.
Nick:
If you also want to get in touch with us. If you've got any questions about MS be there about brain health exercise, or anything else, symptoms, treatments, you name it, you can call our helpline and that's available Monday to Friday apart from UK bank holidays. The hours are 9am to 5pm. Outside of those hours, you can leave us a message and we'll get back to you. So give us a call that's 08000323839
Helena:
So find us on facebook youtube, twitter, instagram and Tiktok yeah and tag us hashtag Miles for MS if you if you're doing the challenge or just if you want to talk about the podcast do let us know as well. We'd love to hear from you and see what you're thinking of it. And then if you have any tips for any future episodes or anything like that, you can find this podcast on Spotify, Google and Apple podcast and Amazon music. And yeah, like I said, leave us a review maybe. I said I would would play my son's song I can do this because I'm editing the podcast so I'm gonna go mad with power and let him sing us out. I want to say thank you to Ann Chapman audio for the music that's normally plays out on the podcast too.
