Voiceover:

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.

Jeremy Henderson:

Hello. Welcome to The Raw Nerve. I’m your host, Jeremy Henderson. Now, we don’t normally drop episodes on a Friday, but today is a special day in the calendar. May 30 is, of course, World MS Day. World MS Day is an international awareness day for everyone affected by multiple sclerosis. It brings the global MS community together to share stories, raise awareness, and campaign for change. Now, this year’s campaign tagline is Navigating MS Together, and we’ll be doing exactly that today with our three guests. Now, to mark World MS Day, MS Australia has today launched a new publication, Living Well with MS: Your Guide To Adapting Your Lifestyle.

Now, this guide provides evidence-based advice regarding modifiable lifestyle factors that people living with MS can consider, such as nutrition, exercise, and sleep. To talk to us about this important new resource, I’d like to welcome our guests, MS Australia’s Head of Research, Dr. Julia Morahan. Welcome, Julia.

Julia Morahan:

Hi again, everyone.

Jeremy Henderson:

Now, another of my MS Australia colleagues, research coordinator and the lead author of this new publication, Dr. Jo Gamble. Welcome, Jo.

Jo Gamble:

Thanks, Jeremy. Nice to be here.

Jeremy Henderson:

And in the third chair today, we have Deanna Renee, who lives with MS. Deanna is a member of MS Australia’s Lived Experience Expert Panel. She’s also an incredible artist. She’s here to talk about her journey towards living well with MS and adapting her lifestyle. Welcome, Deanna.

Deanna Renee:

Thank you for having me.

Jeremy Henderson:

Now, Julia, I wonder if we can start with you, and I think a great way into this conversation is to talk about a survey that MS Australia recently conducted. So we recently surveyed the Australian MS community as part of a comprehensive MS priority survey that we’ll be releasing in full later this year. But we also asked them some specific questions about their health and wellness. We asked Australians living with MS if they’re interested in making lifestyle changes that could improve their MS symptoms and their overall quality of life. So Julia, what did we find?

Julia Morahan:

Thanks, Jeremy. So our MS community priorities survey really showed us that people living with MS really want information that they can trust, that is grounded in evidence, and that is really clear and relevant to their experience. I don’t think this is a big surprise. I think we all want to be as healthy as we can. But for people living with the uncertainty of a progressive chronic condition such as MS, that desire for agency and some degree of control over their health is really much greater.

Jeremy Henderson:

Julia, just a follow-up question. I guess the thing that was concerning with those findings were that, as you said, not surprising that a majority of Australians with MS wanted to do the best they could in terms of their own health. But I guess what was, and again, maybe not surprising because we’re all living in the same world, but this idea that it’s actually sometimes really, really hard to know what are the correct messages out there and that that’s a real barrier to people actually taking action.

Julia Morahan:

Absolutely. So when we did the survey, we found that almost everybody living with MS were interested in making the lifestyle changes that could potentially improve their symptoms or quality of life, but we also found that almost three quarters of them struggle to find that credible, safe and relevant information in order to make those changes. So that is really a significant issue because it is a barrier, as you said, it’s acting as a brake on them being able to make these positive lifestyle changes that we know would improve their symptoms and their overall health.

Jeremy Henderson:

So that’s the bad news, but we’ve got some really good news. How is MS Australia responding to this issue and this need for clear and trusted advice?

Julia Morahan:

Well, I’m so glad you asked. So we do have good news. So we’ve said, people definitely want this clear and evidence-based advice. And we are here today to talk about MS Australia’s new resource Living Well with MS. And this is one way that we are responding to that feedback. So we’ve worked with researchers, we’ve worked with healthcare professionals, members of the MS community, people living with MS, to really provide them with something useful and empowering.

Jeremy Henderson:

Thank you, Julia. Deanna, I’d like to ask you some questions along a similar line. But before I do so, I wonder if you’d be happy to share a little bit about your MS diagnosis and the journey that you’ve been on.

Deanna Renee:

Yeah. Of course, Jeremy. So I was diagnosed when I was 17 years old. And I’d say it’s not the best way to start becoming a young adult. At the time, I didn’t know about MS Australia. The internet isn’t what it is today, so it was quite hard to find resources. So for the first few years, I was extremely, I guess, under supported in my diagnosis. And it was such a time of fear and uncertainty. It was just a really quite a dark time, to be honest. Luckily, I had a chance encounter with somebody who also had MS, who was happy to dispel a lot of the stigmas that I put on myself from the limited information I was able to access.

And that really turned my life around when I was 20. And I started getting into university, travel, things I didn’t think I might be able to do with MS, as that was a narrative that was given to me when I was young. And I became really passionate about being an advocate and representation of what MS can look like.

Jeremy Henderson:

Julia talked about this idea that people living with MS want to have a greater degree of control over their health, and I think for obvious reasons for people with MS living with a progressive condition. But I wonder if you can unpack that idea that you’re living with that uncertainty all the time in terms of dealing with your MS and why being able to control the things that you can control is so vital and so important to you.

Deanna Renee:

Yeah, I think you really nailed it there that living with MS does come with such a high degree of uncertainty, and that can be really, really scary, especially when you don’t really know where to turn for maybe the right advice or where to go to get help. So having control over these lifestyle factors is going to be feeling really, really empowering for me, and I’m sure so many of us in the MS community. And we are so motivated to take control of our health in ways that we can and influence our health and wellbeing in positive ways.

Jeremy Henderson:

And we talked about this idea of just everybody drowning in a sea of information, some reliable, some not so. Personally for you, is that sometimes overwhelming?

Deanna Renee:

Yeah, definitely. Having lived with MS for so many years now, I’ve been almost bombarded with information, different types of things to do that might help. But it is so hard out there, especially in our digital age to separate the hype from the help, I’d say. So having a guide like this is going to be so essential just to know what’s evidence informed, safe. Yeah, I’m really excited to get it out there for the MS community.

Jeremy Henderson:

And I imagine, again, living with MS, being able to have that confidence that when you’re taking steps, that the advice you’ve got is credible and safe becomes even more important, because at all times, you’re thinking about how is this going to impact my MS?

Deanna Renee:

Yeah. 100%. I myself, I don’t want to waste my time or energy on something that isn’t backed by evidence that might make my symptoms worse. I already have limited energy and it’s definitely going to be a great factor in using the guide for me.

Jeremy Henderson:

Thank you, Deanna. Jo, firstly, congratulations. Tell me a little bit about the, what is Living Well with MS publication? What was it designed to achieve? What’s its goal?

Jo Gamble:

Thanks, Jeremy. So it’s a resource that pulls together all the latest evidence and research on modifiable lifestyle factors. And it gives people with MS a tool to go and make those changes confidently and in consultation with their healthcare team. There are many areas that people are interested in, that they think that they can maybe make adaptations to. And this is a go-to resource for them that they can feel confident that they have the knowledge in there.

Jeremy Henderson:

So one of the keys here really is this idea of it being it is evidence-based. Tell me what does the evidence tell us about the value of addressing modifiable lifestyle factors for people living with MS?

Jo Gamble:

Yeah. So there’s really strong evidence. For example, physical activity can help people with their symptoms and fatigue and overall well-being, also following a balanced healthy diet. But we’ve also covered in the guide some emerging evidence where it’s not quite as concrete, but it could help. It’s helped other people .and people want to explore those avenues to see if it will help them. And they can do that safely knowing that there is some evidence. It’s not just as strong yet. And people can just try small changes. And it doesn’t matter if it’s a small change, it can make a big impact on their well-being.

Jeremy Henderson:

One of the keys to the success of this publication and the strength of this publication is just how widely you collaborated with others outside of MS Australia. I wonder if you can tell me about the people and the organizations and the individuals that had input into the guide.

Jo Gamble:

Yeah. So it’s been a huge undertaking. I’ve worked with over 25 researchers and healthcare professionals to pull all this together. They’ve provided me with the best and current research out there. And not only was it working with them, it was working with the leap. And I had to thank Katie and Sarah from the advocacy team in coordinating those focus groups and those feedback sessions that were so insightful and useful for me to put this in a guide and that was practical and useful. And then the research team that I work with has been really supportive.

The design team, Karlo’s been amazing at pulling together an engaging document. It’s just terrific. It’s fantastic. And I also have to thank Julia for giving me this opportunity. It’s been a really valuable experience for me to learn even more about MS and what people are going through and understand that real lived experience. So I am so grateful and it’s been a real privilege.

Jeremy Henderson:

Well, you’re very justifiably proud of the guide, and I know that MS Australia is very proud of this new publication. Jo, I wonder if you can tell me. So people would be very familiar with some modifiable lifestyle factors. I think when we talk modifiable lifestyle factors, the ones that come most readily to mind are diet and exercise. This guide covers 11 modifiable lifestyle factors. I wonder if you can just briefly run me through those.

Jo Gamble:

Yeah. Like you say, they’re the usual suspects, but there are other areas that people are really interested in. Getting enough sleep, looking at their weight, looking at reducing their stress, quitting smoking, supplements, including vitamin D. There’s been some evidence lately about the microbiome being involved in MS triggers. People with MS may have issues with their lipid levels. And also a lot of people are living with other health conditions that they need to manage on top of their MS, and it can be quite overwhelming.

Jeremy Henderson:

Thank you, Jo. Julia, if I could turn back to you, I’m just wondering if… We talked about the Lived Experience Panel, the Lived Experience Expert Panel, I should say, and their input into the guide. I wonder if you could just speak to why that lived experience focus is so critical in the work of MS Australia and to MS research in general.

Julia Morahan:

Hopefully, it’s pretty obvious that everything that we do at MS Australia is for people living with MS and the general MS community. But I think something that we do really well as an organisation, and Jo has clearly articulated, happened extensively with these new guides is put people with MS at the centre of everything that we do. And I really think this idea of having people living with MS inside the process, making sure that what we’re doing, especially with something like this, we don’t want to produce something that’s not relevant to people living with MS, not relevant to their lives or not fit for purpose.

We want to make sure that the guides are as useful and practical as they can be. But also more broadly, we want our research program to be as relevant and useful to people with MS as possible. We want to make sure that the answers that we are seeking are going to be helpful for them. So I think the use of people with MS, the involvement of people with MS, the consultation, the feedback, the focus groups that Jo mentioned is really just an extension of what we do in everything that we do within the organisation.

Jeremy Henderson:

Thank you, Julia. Jo, I wonder if you can answer this one. How does the guide balance delivering the need to deliver clear and easy to follow advice, but also that need to perhaps, on occasion, not be too prescriptive, that idea that you’ve got to recognize that maybe what might work for one individual may not work for somebody else. How do you find that balance?

Jo Gamble:

Yeah, of course. Everybody’s different. And everybody living with MS, they have different symptoms. So I guess the balance I try to strike is giving people practical tips that they can try, small changes so it’s not too overwhelming, rather than giving them a prescriptive, strict set of rules. I think when you go down that pathway, it’s not going to be accepted as widely as it could be, even though it could be with the best intentions. And I think a lot of areas that are covered in the guide, there isn’t strong evidence there yet. But there are some tips in there that people can try and they know they can do it safely in consultation with their healthcare team, and they can talk to their MS nurse or their neurologist about it to make sure that they can implement these with guidance and assistance.

Jeremy Henderson:

Thank you, Jo. Deanna, I wonder if we can come back to you now and just talk about your involvement in the publication. What are your thoughts on the publication and also your involvement in the project? I wonder if you can tell me why you were so keen and enthusiastic to be involved in this project?

Deanna Renee:

Yeah, thank you, Jeremy. Like I said, when I was first diagnosed, I didn’t have access to resources or supports, and that led me into a pretty dark period in my mental health because I just didn’t know what to do. And receiving a diagnosis at so young, I was so isolated from my peers. I lived regionally. So it was just such a bit of a terrible time. So when this guide was… When I was asked to be involved in the focus groups, I just thought this publication is exactly what was needed. I wanted to be part of the project to help other people with MS have access to clear information that they can use. And having this information when I was 17, or I think this is going to be relevant for people at all stages of their MS diagnosis journey. It’s just going to be so beneficial to their health.

Jeremy Henderson:

Deanna, the guide emphasizes quite a number of times the importance of social connections, the importance of community, the importance of finding your friendship group, your networks, people that can help you, so you’re not doing this on your own. How important is that?

Deanna Renee:

Thanks, Jeremy. It’s so important. At times in my MS journey, I felt so isolated and lonely and it has been hard to find, I guess, my MS tribe. At times, I’ve only had supports from my allied health team, and I’m so grateful that I have had such supports. So fostering those social connections is so, so important for your mental health, your wellbeing, just the whole journey. Living with MS can be really hard. And it is so important to look after yourself and work towards these connections.

Jeremy Henderson:

And again, coming back to the guide, I think that’s what I love about the guide. The guide just has so much practical and really actionable advice and not just one prescriptive piece of advice about how you might go about expanding your circles and what that may look like, but varied advice. So you’ve got things that are going to work for a whole range of people, which I think is really important.

Deanna Renee:

Yeah, I agree. The guide’s so easy to follow. And if ever in doubt, MS Australia’s website, that’s where I found a lot of my support systems. I’m from Victoria, so MS Plus is my local branch. I found so much community and connection by accessing these services.

Jeremy Henderson:

Thanks, Deanna. Jo, it seems to me that one of the strengths of this guide is that it’s not just, I guess, providing that advice, but also helping people, helping readers of the guide to say these are the steps you might be able to take to get from A to B. Because in terms of the modifiable lifestyle changes, we’re talking about behaviour change. It can be hard for all of us. Whether you’re telling people about the best diet, the best exercise regime, giving them advice, but then it needs to be actionable as well. And I think one of the success measures of this guide is it does provide those tips and that helpful advice. How important was that to you in the formulation of this project?

Jo Gamble:

Yeah. I think I wanted to give people a way of making small changes, giving them the confidence to do that. I feel like this guide is giving people the empowerment to make these changes, that it’s not overwhelming, it’s not telling them what to do, and it gives them a bit of guidance. But then to go and have conversations with others, peer support groups or with their MS nurse or neurologist about these areas that they’re interested in making these changes. So I really think knowledge is power in this guide. It’s empowering the people living with MS to take control. And it’s not always about your medication or things like that. It’s about what can you do straight away when you look at this guide.

Jeremy Henderson:

Deanna, that’s obviously important, this idea of agency, this idea of empowerment.

Deanna Renee:

Yeah, it definitely is. I was just going to add on to what Jo was saying. I think one of the great things about this guide is the 11 modifiable lifestyle factors. They might not be relevant for everybody at different stages of the MS journey, but why I think it’s amazing is you can quickly navigate to an area of interest for yourself. So for me, I was very interested in more of the mindfulness, the stress reduction, and the diet stuff. And I might better navigate back at a later stage of life when I do need to read up on different other parts. So I think it’s going to be really easy to access for the community as well.

Jeremy Henderson:

So Deanna, just on that point, what do you do to reduce your levels of stress other than joining us on a podcast?

Deanna Renee:

Thank you, Jeremy. Honestly, I really struggle with my stress reduction. It’s probably one of the factors that I really do need to work on as we do know that stress can increase MS symptoms. I do live with other health conditions like depression and anxiety. So it makes it extra tricky for me to manage my stress. But for me, I focus on what I can control. I like to do walks in nature. You did mention I’m an artist, so I find a lot of stress reduction in creativity. I also do a clinical approach called opposite action, which, to very briefly explain that, it’s choosing to do the opposite of what your emotions tell you to do.

So if I am having a bad day and I might just want to stay in bed all day, I say, “No, let’s do the opposite.” And I’ll get out and go for that short walk. So yeah, these small routines, they just help me stay grounded, calm, and it makes a huge difference in managing your day-to-day with MS.

Jeremy Henderson:

Deanna, I wonder if you can tell me, is there anything that you have learned through your involvement with the development of this guide regarding the 11 modifiable lifestyle factors covered in the guide that you maybe weren’t familiar with before or…

Deanna Renee:

I’ve been familiar with most of the modifiable lifestyle factors. I’d say the thing that I probably learned the most is how all these factors connect. So things like stress, sleep, and diet, they don’t work in isolation. And the small intentional changes really do make a big impact. So yeah, small changes, big impact.

Jeremy Henderson:

Fantastic. Julia, I wonder if I can come back to you now. So today, we are launching and promoting this new guide, but we’ve also developed a similar guide, but rather than the consumer-facing, we’ve developed a second guide for healthcare professionals who work with people living with MS. I wonder if you can tell me a little bit about that publication?

Julia Morahan:

Yeah. So we have a companion guide for healthcare professionals, as you say. And this one is really covering the same topics, of course, but aimed at that audience. So what we were thinking with this guide, and I really need to credit Jo with this is… And similar to what you were saying, Deanna, honestly, like we know that people need to be exercising and eating well. We know this as humans. We don’t do it. So it’s also about giving people a way of enacting that. So the how piece that Jo was super passionate about has been really important in these guides.

And so the healthcare professional one is aimed at the healthcare professionals, but with the lens of they’re speaking to a person living with MS, and that person is potentially asking them about what they can do with respect to their diet and their exercise. But then how can you deliver that advice? What’s the advice? Sure. But how can you deliver that advice to try and help these people actually make those changes? So really trying to bridge that gap. And just also making sure that everybody’s up to date with the latest evidence. Not everybody sees people living with MS in the clinic every day. Some people do, but not everybody does.

And so just having all of that evidence in one place so they can refer to it and make sure that the advice that they’re giving is the best possible advice based on the evidence that we have now. So those were really our aims. So we have two guides, 11 modifiable lifestyle factors, and we’re just trying to come at it from both sides to make sure that we get the best outcomes for people with MS.

Jeremy Henderson:

Julia, thank you. You talked about the how piece, and you talked about bridging the gap. To that point, Jo, the guide, one of the great strengths of the guide again is this act of being such a valuable resource that points people in the direction of other areas where they can get support in terms of that journey around living their best life and connecting people with, whether it be other community groups, other resources, other health professionals. How important was that to you in the development of the guide?

Jo Gamble:

It’s a very important point that people maintain those social aspects while they’re navigating a condition like MS. People do lose connections and they might feel isolated. So I really tried to weave through the guide some ways they can implement social connectedness as well as these 11 modifiable lifestyle changes. And I think as well, just remembering that people just want to be heard, seen. I have to thank Deanna for her feedback in the focus groups for this. It was very insightful, the way you put it about people. They just need to be heard and seen and they deserve to be respected and treated with compassion.

So throughout the guide, I tried to apply that and give as many resources as possible so that people can reach out, make those connections, which we know can make people feel better, improve their mental health and their wellbeing overall.

Jeremy Henderson:

Fantastic. And Jo, how can people access the guide? Where should they go?

Jo Gamble:

Well, they should go to the website. But in addition to that, we have these handy flashcards for people to have a quick step guide of how they can implement the changes. And there’s a QR code on that flashcard that they can scan and it takes them directly to the webpage where the guides sit. And there will be a resource there and also references. So if people are interested, the evidence is all there.

Jeremy Henderson:

Fantastic. I’d like to thank our guests. Deanna, Julia, Jo, thank you all for your expertise and enthusiasm in discussing MS Australia’s new publication. It’s a fantastic and valuable resource that will support and help people live well with MS. As Jo just said, please visit our website for more information or to download a copy of Living Well with MS. And please make sure you join us for the next episode of The Raw Nerve.

Voiceover:

Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.