MS brain health – what is it and how do I get it?

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present. ​

Jodi: Thanks for everyone for joining us this evening. And this evening we're going to talk about MS brain health, or what actually is MS brain health, and how do I get it? I'm joined by Olivia Wills, who's an MS brain health research and a dietitian, and she's going to help us unravel what is MS brain health.

Olivia: Thanks, Jodi. I'm presenting from Gadigal land of the Eora nation. I like saying that at the start of every presentation. So, I'm from Sydney, New South Wales.

Jodi: And I am presenting from the Kulin Nation. So, we would like to acknowledge their Elders past, present and emerging. I've done a little introduction to Olivia.

Olivia is studying at the University of Wollongong, and she's completing a PhD in Multiple Sclerosis and Lifestyle Management, hoping to develop some practical guidelines for people based around brain health. And that's her passion and her area of research and passion about translational research, engaging healthcare professionals and people living with MS to support her research findings into practical, actionable strategies.

And I'm Executive Manager of Client Engagement and Wellbeing and an MS nurse. Now I'm going to hand over to Olivia.

Olivia: Thank you, Jodi I'm going to get straight into it in this idea of brain health. And rather than jumping into what is brain health and starting to explore the perspectives that are really coming through from my research at the moment, I thought to take a step back and actually start by explaining where did this concept actually come from? And so, over the rest of the webinar, I am going to take you on a little bit of a journey, if you will, which explores and describes what my research has been up to date, the findings of my research, but most importantly, what does this actually mean for people living with MS is ultimately the driver of our research.

So, in the late 1980s, the idea of brain health originally developed in the gerontology and dementia literature. So, in the Alzheimer's disease space, which really linked the idea of brain health to cognitive outcomes, which was a primary focus of people living with dementia. Bring it forward to the 20th century and that idea of brain health really extended and opened up to neurodegenerative diseases more broadly speaking. So, the idea of brain health in MS is one example in Parkinson's disease and many other conditions under that umbrella of neurology. And some examples of initiatives from organisations like the World Health Organisation, a really prominent now in the research world, that are aiming to promote, protect and improve overall brain health of people with a lived experience.

Now in 2015, a group of international MS experts all joined and now actually call themselves the MS Brain Health Committee. And that idea of brain health was then extended specifically into the space of MS. And what does brain health mean from the context of living with MS from the perspective of clinicians and consumers, and how can people actually maximize their brain health while living with this neurodegenerative disease. So, brain health from this guidance document was really, I guess, umbrellaed into three main areas of focus. So, the idea of time to diagnosing MS, early initiation of treatment therapies and the one that I'm probably most passionate about as it aligns with my research is the idea of modifying lifestyle behaviours to improve one's brain health overall.

Now, at the moment, and this is where my research really started a few years ago, was the idea of brain health in MS is quite ambiguous. There is no one single definition. There are many definitions from national definitions, from international and worldwide organisations, which has really created a bit of a challenge in the idea of, well, what is brain health and what does it mean for people living with MS? So, taking that a step further, I thought, well, why are we actually interested in brain health in MS? And why did this committee really form in 2015? And as you can see from this graph here, there's two arms. So, the top arm is all reflective of the general population without MS. And then the second arm at the bottom there is reflective of people living with MS. And as you can see, the bottom axis is time. And then the right hand, the left hand axis is change over brain health over that period of time. And as you can see, Brain health naturally declines and that's very much normal. It's part of the normal aging process and everyone experiences that. What caught my attention though is the idea of brain health declines at a much faster rate in people living with MS as you can see from this graph.

And research into this space has associated this decline with the things that we really want to optimise and maximise as outcomes for people living with MS. And that is disease progression, advancing disability, cognitive decline, quality of life and cognitive performance. So that was the basis to my passion that really sparked for this term brain health.

Why not take a step back and focus on brain health as an indirect way that we can maximize these outcomes for living with, or for people living with MS.

Jodi: Thanks Olivia What a beautiful summary of the work that's been done in the MS brain health space to date. So, I am part of the MS Brain Health Steering Committee and have absolute pleasure to be part of that committee, but also gives a sense of where that came from. Olivia, you're correct in that, that the Brain Health Committee, when they first released that document it was about developing a policy that people, that neurologists could use but also is understandable to people living with MS and any other relevant stakeholders as well to really recognize the importance of the brain as an organ that needed to be protected as a healthy organ and that time really didn't matter in preserving the health of the brain. And so what they did was look at that concept of neurological reserve, which you explained nicely to a degree. I'll just go into that a little bit further shortly. But also, really embedding in from a global perspective that disease activity persists even when symptoms are absent, to many people living with MS now that sort of routine.

But in 2015, we're only really, in some countries, we're only really starting to recognize that this was occurring. If you think about it, MRI hasn't even been around for a very long time to help us understand this disease activity. And so that led to the concept that early intervention in MS is critical for better outcomes to protect the brain. So, this concept of neurological reserve combines two aspects. One of it is about the cognitive reserve, which is the brain's finite capacity to retain function and remodelling and also the brain volume. So, we all are born with a certain brain volume. As we age, we lose brain volume, but that happens significantly faster in people with MS.

Not all people, but in many people with MS. And so those two combined make up what we termed people's neurological reserve. And it was very important to protect that because that neurological reserve can be diminishing without there being any obvious clinical signs and symptoms. So, the MS Brain Health document was very much focused on how and how we can have a comprehensive holistic approach to MS management to reduce and protect that neurological reserve. And so they put together a long document of actions, but in summary, these are some of the really practical actions that are very much the focus. When you talk to your neurologist about MS brain health, this is the sort of stuff that they're talking about, they're thinking about and that's access to diagnosis, quality care and treatment.

They have been shown to make a significant difference. We are fortunate in Australia to have excellent quality care of treatment relative to other parts of the world. But what the steering committee did was develop what's a set of standards of healthcare standards that are to be expected in healthcare that are globally accessible, that are globally acceptable for people to have. So those are available at the MS Brain Health website. The other action was to monitor disease actively, closely and proactively. And there's lots of research going into how we can effectively monitor disease.

There are certain measures that we, that I won't go into now, but MRI being an example of one, neurological examination being another way of we can monitor disease. But there's a lot more emphasis on how people can be actively involved in that monitoring as well too using wearables and devices and apps.

And a key part of that, which we're going to talk much more about now is promoting healthy lifestyle. And another call to action was to make sure that we manage other medical conditions as well too. So, when you go to a neurologist and they talk about MS brain health, they're often focusing on this medical model, but also a holistic approach because it does include promoting healthy lifestyle, but that's what Liv's really going to focus on now.

Olivia: Thanks Jodi. That was a really nice segue actually, especially the slide on neurological reserve, which in a way was how the MS Steering Committee defined that idea of brain health in a real contextual sense to people living with MS. I guess for the purpose of my research The definition by the World Health Organization I felt really resonated with me and for people living with MS and their context.

And I highlighted, or I guess circled, I guess this search retrieval. So, I googled brain health in MS and I got just over two and a half trillion evidence sources or sources retrieved from Google, which was absolutely amazing in my eyes. But the fact that then brain health is so popular in research that people wanting to know what this means and what they can do. But with that comes ambiguity, of course, and that definitions of brain health are extremely varied. So put blankly from the start, I really refer to brain health initially, what I initially did, through this idea that brain health is a state of brain functioning across multiple domains. So that brain health affects things like cognition, your senses, your social emotional setting, behavioural and motor domains.

But what I felt was really nicely done in this definition of brain health is that the World Health Organization defined brain health as not being the absence or the presence of a disorder, or the presence of a disorder I should say in this case. Which is very important for people living with MS in that they can have, or people can have MS and still have a healthy brain, but they're two very different things.

So, for my research, the first part of this, I really decided to turn to both perspectives of, I guess, a medical model, like Jodi mentioned earlier. The fact that consumers or people with MS, speaking to their neurologist or speaking to their nurse or allied health team. And then also spoke to those clinicians as well to explain and get a bit more information about what brain health actually means to them.

So, what does it mean to someone living with MS? And what does it mean to someone that's supporting the management of MS? And from a consumer perspective, it was really quite interesting. So, brain health was very much so rooted in people's daily lives. So, their quality of life, how they're experiencing MS day to day, and in inverted commas, living a normal life as such. So going to work and remembering people's names, or starting a new job and learning new software, learning and retaining that information, keeping up in the workplace, and being a valued member in the workplace and within a family setting as well. sustaining meaningful relationships with colleagues, with children, with siblings, with partners, and so forth.

And overall, just having a really good sense of mental health and physical health. So, brain health already is a very varied term. I think I always like to use the idea of what does health do? generally mean to people. And what you might, or the answer you might get from someone is very, very different to what you might get from someone else. And the fact that brain health is quite similar in that sense is that it means something different to a lot of people. But put really nicely, I actually want to read out a quote that a participant described what their brain health means. And they said that brain health is a sense of wellbeing. So, brain health is feeling positive and it's actually feeling healthy. I'm talking about functioning as in words and numbers, but I'm also talking about thoughts and feelings. And I think that thoughts and feelings are a part of brain health and how you feel and your overall health. So, I thought that was a really nice way to sum up that experience of how people living with MS value and perceive brain health.

And then I've taken that, like I said to the clinical perspective and how clinicians, so neurologists and nurses and allied health professionals like dietitians, physiotherapists, social workers, psychologists, and so on. There was a large group of clinicians that I spoke to, to get their perspective then of what that means in practice and how is this idea coming up in conversation. So, it was very clear, and probably by default, I guess clinicians are trained very medically. They go to university, we're in labs and we're in workshops, that brain health was viewed very medically. So again, back to that idea that brain health is somewhat a medical model. People with, oh sorry, clinicians that are treating people with MS very much viewed brain health as, well, MS as a threat to one's brain health.

And that brain health was the ability to protect functions of the brain related to areas of disability, or perhaps even high lesion load. So that brain health is able to compensate for damage in specific areas where disease might be highly active or prevalent and that overall, their role as a clinician is to support brain health, which is in fact supporting cognition and preventing dementia or decline that overall reserve like that graph or the figure that I shared earlier on. So, the perspectives, as you can see, are very different. And I guess as people are watching this webinar as well, I definitely invite you all to reflect on what this idea of brain health means to you, as it might be similar and it might be captured on this screen, but it might also be something very different, and that is okay as well. I think, like I said, we need to be comfortable that this is a varied term and that it is quite ambiguous as well. So, through my research, I've taken both of these perspectives and I've, I've come up, if you will, with three key findings in the early stages of my research. And the first of all is that this idea of brain health is not just a medical concept.

So, through my research, I'm really trying to advocate that Brain health should be viewed a lot more holistically than it generally is spoken about and valued in a clinical sense, but again it comes down to that fact that it encompasses daily living. It speaks to quality of life and how people living with MS are living with a disease that is a lifelong disease. I think on the background of brain health being so varied and meaning something different to different people is that brain health is really hard to measure. I think in conversations with your neurologist, brain health could possibly come up in the sense that you've just had your annual or six month MRI and perhaps you're going through if there's any presence of new lesions or maybe what volume's doing or any weird abnormalities on a scan.

But that is not the be all or end all when it comes to brain health. Like I mentioned earlier, to people living with MS, this is a real experience. So, it does encompass things like quality of life and daily living. It could be a measure of just learning something new and retaining that information. I actually spoke to someone living with MS as part of this study and they had recently just joined a choir and to them I said, so what does brain health mean? And they were saying, that to them having a good brain means they remembered all those lyrics for the song that they just learnt in the choir and I thought that was really important. An area again that Jodi mentioned that I'm particularly interested in is this idea of brain health is somewhat tangible. So, we can endorse and promote behaviour change to really nurture the brain. And then preserve and maximize lifelong brain health for people with MS. And that's where my research has seemed to really taken off and directed the rest of my doctoral studies. So, moving forward, I shared the screen of the World Health Organization definition.

As I've spoken to these perspectives, I really wanted to challenge this idea of brain health in MS and develop a definition that might somewhat resonate with some people incorporating a lot of these aspects that both clinicians and consumers were talking about. So, the idea that brain health is the ability of the brain to retain energy. Optimal neuroanatomical connectivity, which are a whole lot of scary words, but similar to what Jodi said, shared earlier, the fact that the brain can actually compensate for disability or changes and take on functions of other areas of the brain, that brain health is present irrespective of the presence of disease, or that someone with MS can have a healthy brain despite having a disease of the central nervous system.

Brain health should recognize the person as a whole being. So, this idea that brain health is holistic, that it is both a relative and dynamic concept. So, it's not so much static, it is forever changing. And rather than being influenced by a handful of domains, it's also influenced by the interaction and how these domains are speaking to each other across time and across managing MS. Now, a nice figure that I developed as part of my research moves into, I guess, the second part of this, what is brain health and how can I get it? So, this idea of how can I get brain health, I seem to tie very closely to the idea of lifestyle modifications. So, I conducted a big review of literature, and what I did is summarise all of the recommendations that are currently being promoted online, or endorsed by MS organisations perhaps, about what people with MS can do to actually improve and protect their brain health.

And as you can see here, there's a lot of things people with MS can do. There's actually 25, if you were to count all of those little icons. And I've classified all of them under four main domains. And by, or visual sense, that, that domain of physical and behavioural health is definitely the most standout of, of what people with MS can be doing to nurture their brain, brain health, as well as intellectual health, mental health, socio cultural, and spiritual health. And I'm going to talk to a few of these more in this slide here. And some of you might be wondering why I've done this as a puzzle. I like to use a puzzle analogy in a lot of my presentations. And it's more so from the perspective that living a healthy lifestyle or living a brain healthy lifestyle is a is not a one size fits all approach, so yes, I work as a dietician and while I might have similar conversations to people living with MS, I definitely reflect on the fact that everyone is very, very different and the fact that these social factors or social forces are actually influencing how someone might live this lifestyle, and that might be whether they've got an endorsive environment around them, they've got supportive networks, they've got access to health care services.

So, I've more so represented this idea of a brain healthy lifestyle as a puzzle, and I have left three missing pieces, and I feel like that's where people can really engage with this idea of lifestyle. and what they enjoy and what they feel that best resonates with their life and fits into their social life that they can do to live a brain healthy lifestyle. I have put nine elements on here and I'm going to talk through these briefly as I feel they do have the strongest evidence base behind them about what people can be doing to nurture brain health and back to that graph or the figure from a few slides. At the beginning of the presentation about brain health declines over time, what can we do to somewhat slow that process but maximize those outcomes?

So first and foremost, on the top left hand side, exercising regularly. So physical activity and exercise. is in no doubt so important. And the evidence is absolutely clear that people living with MS should engage in regular physical activity, which I think a lot of people are starting to become aware of now. But it's more so about what activity is relevant and important for those people. And perhaps that means working in with a physiotherapist or a therapist. An exercise physiologist to create a tailored program that suits one's ability. I think it's easy for me to sit behind a camera here and say that everyone should be going for a walk or a run 30 minutes every single day, but for a lot of people with MS that's just not doable. And so really seeking supports to be physically active in line with your ability the evidence for that as a non pharmacologic therapy is so, so strong. The next one there is avoiding smoking. Same thing with exercise. I think most people know now that smoking is not a healthy behavior and even passive smoking. So being around people that are smoking as well can really affect your MS, can affect symptoms and can affect how the disease projects. And so, seeking supports to stop smoking, that message of the quit smoking, literally that message by the quit line is the exact same for people with MS as the general population.

But I think in MS there is that special caveat that we know smoking increases disease progression and outcomes. And so, the supports of seeking support services to stop smoking is very, very important. Staying socially connected. So, involving or surrounding yourself with family and friends and a medical team that is very supportive of your health situation is extremely important. I think in life, generally speaking, you want to associate people with people that bring you up rather than bring you down. And those supports, I think shouldn't be overlooked in the context of MS and when trying to nurture brain health as well. Keeping an active mind is a relatively new recommendation that's coming through from the literature. And it's actually recommended that people engage in about 25 minutes of brain activity a day. And what that might look like might be things like doing a sudoku or doing a puzzle or doing a puzzle like this, piecing together your lifestyle pieces. It could be something like listening to music or hand eye coordination, things like sewing. But keeping the brain active in the sense of strengthening new connections is very important and I think again is something that might be quite small and insignificant to people with MS. And to a lot of people actually, but the evidence is really starting to accrue in this space, which again can't be overlooked.

I'm going to skip down to eating a balanced diet because I think that falls under an umbrella of a few other lifestyle factors on here. And of course, being a dietitian, I like talking about the diet element of MS as well, but the importance of eating a balanced diet to nurture brain health is very, very important. And the reason being is, is probably multi fold. So, we know that diet can help with symptom management of some common symptoms in MS. Fatigue being a big one, bowel, digestive health, incontinence and swallowing difficulties and things like that. But the fact that the role of diet in managing and preventing comorbidities is so significant and we know now that there's comorbidities. So, things like diabetes or hypertension or high blood pressure, high cholesterol or having high fat in the blood can actually increase and change the way the disease progresses and can worsen symptoms in some cases as well.

So, for a lot of those conditions outside of MS, the first line therapy in most of these cases is actually diet. And that doesn't change with regards to MS is thrown in the mix as well. So, coming back to eating a balanced diet and what that means, I'm a big advocate for the Australian Dietary Guidelines, as we know and understand are the most important balanced and varied dietary guidelines for people living with MS at the moment.

There's a lot of research out there when it comes to MS, and I refer to these guidelines in the matter of there's no restriction of food groups. You can enjoy a variety of foods and foods from all of the core food groups without restriction and risk of deficiency. Now, under this idea of eating a balanced diet as well, there's also on the right there, maintaining a healthy weight, which arguably falls under that idea of preventing or managing comorbidities and limiting alcohol intake. We know that alcohol can affect MS symptoms, can also affect how disease progresses, perhaps in some people as well. So, the Australian Is quite high in my opinion, but it's actually no more than 10 standard drinks in any one week, and no more than two standards in anyone sitting with a few days off in between. Now, what that might look like for someone is going to be very different for someone else. And again, with all of these things, it's very important to speak to your healthcare team for support and advice in seeking what is appropriate for you and in the context of your health and most importantly, your Ms.

Finally, a big one that Jodi and I seem to bond over is managing stress and mental health. Mental health is a huge one in MS, or in MS and outside of MS. Managing stress and keeping stress at bay and doing things that look after yourself. Because behaviour change is very hard. We've had these chats over the last few months, and I think it's easy for me, like I said, to sit behind a screen and talk about all of these recommendations and expect everyone to hang up from a webinar and go and live a magical and healthy, brain healthy life. But behaviour change is very hard and shouldn't be overlooked and seeking support with the healthcare team is so, so important to see how you can enact some of these recommendations.

I think that brings us to some Q& A's for now, where I can speak to more so, some more of these recommendations, but can hand it over to Jodi as well and we can have a bit of a chat through some of these that have come through.

Jodi: We're going to start with Olivia, what's your top 3 tips and advice to maintain brain health?

Olivia: Do you know what Jodi, when I first read this question, I think again by default my brain went straight to, well, being physically active, avoiding smoking if you are smoking and eating a healthy diet and I left it at that. And then I had a conversation with someone last week and someone living with MS and they were saying that they don't necessarily know, they know that those things are healthy behaviours, but it's actually enacting those behaviours that is the hard part. So rather than my advice being these recommendations, I think I've gone through that well and truly enough in this puzzle slide and analogy.

But my top three tips would be to start small. So, pick one of those lifestyle behaviours or one of those modifications and work towards that. And oftentimes these behaviours don't occur in isolation. You might find if you start with physical activity that that can actually have a flow on effect on mental health. And vice versa. So, starting with one behavior and having that flow on effect and making it manageable so it's not overwhelming is really important.

My second tip would be to create a supportive environment. So enacting all of these things with a healthcare team that's supportive of your health and needs with your family, your children, your partners, your neighbours, and whoever it might be, but an environment that is supportive.

And thirdly, like I touched on, just then, be kind to yourself because this is very hard. I think it's easy for us to, to just prescribe and talk through these things. But celebrate your wins if you're able to change something. Celebrate that and really be kind to yourself. It's a long journey.

Jodi: Yeah. It can be. It certainly can be. Well, we unite in one tip and that is about the importance of connection. I think connections with people around you, your healthcare team, but also the people around doing your life are really important. So, I think that one of my top tips and advice is to maintain and improve your brain health is to gather around you people who are supportive in you achieving your goals and in what you're doing.

And close to that, I guess, is keeping it local. I found that the more you're doing things locally around you and within your own community can be really important to helping brain health as well too, whether you're exercising locally or whether you get your input from others locally. But I think that sort of concept of keeping your health in your neighbourhood is really important.

And I think another thing that one of my tips is to think about safe accountability. And we often need accountability to help us achieve our goals. But sometimes it's not safe accountability. So, I often think that having someone like a personal trainer or a dietician or anyone in your life who you feel safe, who values and loves you for who you are, but also gives you a sense of accountability can be a really useful thing to have when you are trying to achieve brain health goals.

Olivia: Great.

Jodi: So, the next question was, do people living with MS have different brain health considerations than the general public? So, from a medical perspective, they do because MS is impacting the central nervous system and the brain itself. So, I think there is an aspect of that. Liv, did you want to buy into that question?

Olivia: Yeah, I think from the lifestyle perspective or what people can be doing from a behavior perspective, the considerations are quite similar, but I think the urgency is what differentiates it between the general public. Like Jodi said, there is disease and pathology that's happening, that the urgency of these recommendations is stronger than the general public.

Jodi: So the broader, considerations are the same, but yeah, well put, perfect.

Olivia: Yeah.

Jodi: So if you had to pick one, what is the very best life hack that you would offer to people living with MS?

Olivia: I took a while to reflect on this question. I came down or kept coming back to the idea that whatever you choose to do, I think consistency is important, and that is consistency in medications, consistency in social life, consistency in the actual behaviours that you are enacting. Come down to the premise that MS is a lifelong disease, while researchers are still doing their best to look for a cure. At the moment, living with MS is lifelong and that consistency would be the biggest life hack to whatever you embark on doing, doing something that you can sustain over that period.

Jodi: Thanks. Yeah, good one. Good one. I think mine still comes back to that safe accountability. I think having someone to hold your measure is a very valuable thing to do when you are starting to think about brain health and a lot of areas of this brain health really require you to have a behavior change in some way. And behavior change is really tough as we've talked about. So, I think having someone on your side who also keeps your accountability is probably my best life hack. Although I think I've got quite a few.

Olivia: It was hard to pick one, wasn't it?

Jodi: It was really hard to pick one. One of my favorite sayings is it's not what you know, it's who you know. My kids are always telling me, I know mum, it's not what you know, it's who you know. And I'm like, oh yeah, I kind of get that, I kind of think that's a bit of a good life hack as well too. But both of them.

Olivia: Yeah, very important.

Jodi: The next question is, can you please cover the sorts of things that indicate that my brain is benefiting from the interventions?

And we've talked a little bit about monitoring and measuring brain health and how challenging that is in many ways to be able to do that. I think one of the ways is how well you feel whether you're feeling well, feeling a sense of vitality and wellness. I remember you know, in the 80s, that sense of, that word vitality was so on trend. Everyone was talking about thrilling, and I thought, oh, I miss that word, because it's a lovely feeling to feel, to have a sense of vitality. So, it's one way that you can tell whether you're benefiting from the interventions is how well you're feeling. What other ways, Liv?

Olivia: Yeah, so from the medical perspective, default speaking to neurologists as part of my work as a dietician, they always tend to look to clinical outcomes of measuring through MRI and things like that. So, by default, that's probably what clinicians are looking at and to seeing if the outcomes are being, it's somewhat prevented or just maintained. But I do like Jodi's answer, and I think it reflects what I've been saying as well, is that brain health in a way is an experience. So, it's if your symptoms are being well managed and you're feeling well in yourself and that you're not noticing any weird inklings or tinglings that are happening throughout the body. I think both of those things probably balance each other, clinical and your own experience.

Jodi: And there's lots of clinical measurements that are much more sensitive to change than MRI and neurological examination emerging in the research now, which is really exciting because I think it's in that space that we're going to really better understand how your brain is benefiting from those interventions, rather than these sort of big, large things, even a sense of wellness that you have is quite a large thing as well too. And sometimes it doesn't happen until you reflect back and think, oh wow, I do feel a lot better than I did six months ago from doing what I've been doing, eating better or exercising or limiting alcohol, all those things.

Olivia: Yep, yeah, I agree.

Jodi: One of the questions that we had was, how do you make friends while living with MS, and why is it so lonely? I'd encourage the person who asked this question to give us a call, because that's terrible that you feel so sad and lonely. I think a lot of people with MS do feel lonely. And it's a really important emerging concept that's coming with a better understanding of chronic disease and living with MS. A sense of loneliness and the impact that has on overall health. And I noticed that you included that as one of your social connections, as one of your brain health little puzzle pieces.

And it's so important that we recognise that loneliness is a part of brain health too. And there's so many initiatives at the moment within Australia that are looking at loneliness. The loneliness initiative, if you just Google these, the loneliness initiative, you find that lots of people are contributing really great ideas to how to make friends.

But with or without MS. I think some of the aspects of MS that make it lonely is that it's, you don't really know what day you're going to have. Like, you don't really know, so that lack of predictability, some people have good days and bad days and so I think that that can feel really lonely and isolating.

I also think that it's really hard to describe some of the symptoms with MS, and so a lot of the time when you're having trouble describing some of the symptoms that can contribute to the loneliness. Lots of people talk about invisible symptoms, and invisible symptoms, again, can make you feel lonely and isolated because people can't see them and acknowledge that that's what's going on. Sometimes it's just easier to retreat than explain things that are difficult or and have those difficult conversations and find those descriptive words. And I think also that fatigue has such a huge impact for people living with MS that that contributes to not having the energy to go out and socially engage. So perhaps needing to find some other ways to be socially connected with people. So, I think that's, that's a long answer to that one. Olivia, did you have any other things that that, that you think about loneliness and anxiety?

Olivia: I think how you started, Jodi whoever did mention this I'd really encourage them as well to reach out to MS Plus and that could possibly facilitate some connections to people to have those conversations with as well.

But you don't need to necessarily make friends with just people with MS. So it could be bonding over something that you enjoy or have in common with your neighbour and sewing or it's a book club or a journal club or walking around the block with your neighbourhood every Monday morning or something like that bonding in a way that perhaps is external or outside of living with MS might help you as well feel not as isolated and lonely now being diagnosed with something that is quite chronic and perhaps scary to this person as well.

Jodi: And there's lots of, lots of people living with MS in my experience who don't feel lonely and who, who very loved, valued and supported.

What supplements assist brain health? That's so for you, Liv.

Olivia: I was going to say, I think I can take that one. Yeah. When it comes to supplements and MS, and brain health specifically, there's really no evidence to support that. It's to say that people living with MS should supplement X, Y, Z and that's going to maximise brain health. When it does come to supplementation, the only role for supplements is really when dietary intake is inadequate. And that is really only assessed when you're working closely with a healthcare team or a dietician or your neurologist or nurse. And so, if you are dabbling in supplements, I definitely recommend that that's a conversation that you really start to facilitate with your healthcare team, as there are some interactions with medications that you need to be very careful of.

So put simply, there is no one supplement. I encourage you to speak to your healthcare team and talk about that further for more personalised advice as opposed to generic over this webinar.

Jodi: How does the long term use of stimulants affect the brain and do you advise using them? So well, that's a big question and I would definitely encourage the person who asked this question to touch base with you with their medical team as well. Some of these conversations aren't easy to have with your neurologist. Some of them are you know, some neurologists are great and have really good free conversations. Others are a little bit harder to do that. Even discussing some of the supplements that, you know, in clinic can be quite difficult because the neurologist may not be familiar with them. That can be a challenge as well too, but the long term use of stimulants can affect the brain in all sorts of health can have implications, health implications, but it does depend on what type of stimulant that you are having.

And it can be, you know, medical or non medical stimulants. So, there's a whole lot of, there's a whole lot in that question, but my advice would be to have that conversation with your neurologist. And if it's difficult, and or your DP, and if it's difficult, just write it down, and bring a notepad and say, now this is the question I've got to ask you.

Olivia, do you have any other tips.

Olivia: I probably can't speak too much from the stimulant perspective, that's probably outside of my scope, but how you finish that, Jodi, sometimes these conversations and questions might seem, whether it's simple or you feel embarrassed to ask, so writing them down is a really, really good strategy, I guess for confidence for one, but also so you don't forget, because if you're only seeing your neurologist every, I don't know, 6 to 12 months or something like that, that's a long time to wait when you can get an answer quite quickly.

Jodi: Yeah, yep, you can also ask our, bring one of the MS Plus nurses. They tend to have a lot of information about that as well, as the different types of stimulants as well too, because I said there's medical and non medical stimulants.

What are the best foods to manage afternoon fatigue?

Olivia: When I read this, I smiled to myself because I think we've all probably, everyone listening here has probably hit three or four o'clock in the afternoon and experienced a bit of a dip in energy and mood. And I do want to stress that that's actually a physiological response. So circadian rhythms, your sleep wake cycles, tend to change towards the afternoon to decrease alertness because you're going into the evening, it's wind down time, you're about to get ready for sleep in the next few hours time. But coming back to the food part of that question, it could be related to foods, but it could also be something like stress.

Did you sleep poorly the night before? Are you adequately hydrated? Have you got another medical comorbidity that's finding that fatigue is really exacerbated? So, there are a lot of things that could influence afternoon fatigue. From a dietician perspective, and with that hat on, from a food lens, I definitely, like I said, encourage guidelines that are adequate protein and fiber definitely throughout the day, which helps you keep nice and full throughout the day rather than experience any peaks and troughs in your energy levels.

But regular eating as well. So, avoiding prolonged periods of fasting where you then might get that dip in the afternoon and raid the pantry or chew your arm off because you're so hungry. And in saying that as well, food just as important as hydration. So, making sure you're drinking enough throughout the day to keep your brain active and healthy.

Anything from your nursing perspective, Jodi?

Jodi: No, I think they're saying that there's a whole lot of Physiology in that afternoon lull. And for people living with MS, it's often worse. But it's really good I think you touched on the need to approach that holistically and to consider all the different reasons that might be contributing to that afternoon slump. And I agree that hydration is, I, I really notice when I haven't hydrated well enough, but that afternoon slump seems to be a lot worse.

Olivia: And I think we overestimate or underestimate the importance of hydration. I think that can be easily overlooked when everyone has such a tunnel vision, food lens and food focus. Hydration is just as important in my perspective.

Jodi: Yeah, for sure. What food stimulates dendritic growth?

Olivia: I wish I had a magic answer.

Jodi: Wouldn’t it be good to have answer to that.

Olivia: I was reading it and I thought wouldn't that be fantastic if, if we had a magic food that could, could promote remyelination or dendritic growth something like that. Unfortunately, we don't there is no magic food in MS. There's no magic food for any chronic condition in, to my knowledge, that can promote growth in the fact or reversing MS to a sense. Again, coming back to that idea of a balanced diet. If you're eating a balanced diet, then you've got good opportunity that you're having foods from all of the core food groups and not missing out on anything. So that special caveat could potentially be reduced by just ensuring variety rather than one food.

Jodi: Thanks. Another question I noticed my brain does well on a ketogenic diet. Is there any evidence to support this or is it healthy?

Olivia: So, ketogenic diet is one that's getting probably more popular in the MS space. There's really, really great evidence supporting the ketogenic diet for children with epilepsy.

We're not there as much with regards to MS. There was a really great research paper that was conducted only a couple of years ago, so it's still quite new, exploring the keto diet in MS and looking at the safety of that diet, but also the effects of that diet on outcomes. The outcomes were positive in the fact that following this diet over six months, there was really great improvements in quality of life and fatigue and some objective markers of disability.

But what I wanted to stress with regards to the more restrictive eating patterns. So, for those who aren't familiar, ketogenic diet is a high fat, low carb diet. So, removing or excluding that carbohydrate food source can significantly reduce micronutrients and macronutrients, and one of those is fiber. So, one of the biggest side effects reported in this study was that there was the side effect of constipation and following a ketogenic diet, specifically in people with MS.

Now, constipation is quite a prevalent symptom already. In MS, it's associated with slow transit and altered bowel health and digestive health. So, the fact that that could exacerbate an already present symptom is a little bit concerning. So again, if you are embarking on wanting to change diet, there's pros and cons with everything, but take that conversation to your healthcare team and see, is this right for me? Coming from the background of how you're living with MS and how that's being managed, and perhaps the symptoms that you're experiencing as well.

Do you have any experience or any questions, Jodi?

Jodi: No. Great, great answer. That's very similar to my experience was that there was no one particular diet that and moving on to intermittent fasting. And so, I guess there's lots of pros and cons of intermittent fasting. One of them is it's very good for lazy people. They can't be bothered preparing a meal. Now I laugh about that, but actually not necessarily in relation to intermittent fasting, but when we're talking about diet and dietary changes.

One of the things I talk a lot to people about is the impact that that's going to have on the rest of your life in terms of energy distribution. Now sometimes, you know, sometimes energy begets energy, so you start on a diet and you start to feel well. Most people do and so that sort of, that sort of is a big part of it. snowballing effect. Other times people can really, the changes that they make to their diet can really impact the family and that can have quite negative consequences on family functioning. And I think they're really important things to consider when you are thinking about what diet approach that you want to take and how that's going to, how that's going to suit you and how it's going to fit with you too. Eating healthy anyway was my way. Any, sort of way eating healthy and making good choices any way that's going to work for you. But what's your thoughts on intermittent fasting?

Olivia: So again, pros and cons with intermittent fasting. The biggest con and red flag with intermittent fasting is that it's actually contraindicated for people with some comorbidities. So, diabetes is a really important one and diabetes again is quite prevalent in MS as well. Even people with high blood pressure or cardiovascular disease, intermittent fasting is definitely not recommended for people combating those comorbidities.

From the benefit perspective, I think like most things with regards to diet, it is a sense of control. There are some studies that have been done that intermittent fasting can improve emotional wellness and quality of life aspects, but the hard part about dietary studies is compliance. So with that study, with the study I spoke about with the ketogenic diet as well, there was a really low adherence rate, which means that people are finding these diets really challenging to stick to over time, and thrown in the midst of everything else that's happening in life, your social family setting, that might mean cooking two separate meals, or even three when you're sitting down with your family. All of those things need to be considered and whether that's relevant for you or whether that might actually just create more pressure and perhaps even guilt if that's something that you can't stick to.

Caffeine part of that question. I think, well, coffee in my eyes is a crutch to most people. I think, again, we also turn to that coffee at the 3pm lull most of us experience. But with regards to caffeine, I've taken this question a bit of a different angle. More so, I wanted to actually ask this question, why are they using caffeine to sustain their energy? Is that because they're stressed, or they're not sleeping, or they're not eating well, or they're not hydrated enough? I would probably encourage that person to reflect on the why before this question as opposed to just me providing advice and saying you can have X amount of cups of coffee or an energy drink, which I wouldn't recommend anyway. But reflecting why that might be. well, why the person might be struggling to sustain energy, rather than the how many.

Jodi: Well, thank you. I think that we could talk all night about diet and having Olivia here as a dietitian, probably we did get lots of questions about diet. We also had other questions that that were really answered best from a one to one conversation with one of the nurses. So, if you feel like your question wasn't answered, we're really happy to please contact one of the MS Plus nurses. They have an extensive knowledge on brain health, not so much on they still have a lot of knowledge on different diets. Not as good as Olivia, but we certainly do have other webinars available about different dietary and different dietary approaches as well too.

There hasn't been any other question answered for the people tonight. So, these are just some of the things that we do at MS Plus. I've mentioned the nurses, we also have a dietitian, who is available as part of the team in Melbourne and in New South Wales. Continence nurses, physiotherapists, basically anyone that can help you along your path to brain health.

And so, as I said, my number one hack was getting that safe accountability and getting your team on your side. So, yeah. We also have information available on our resource hub that you can do and also podcasts, MS podcasts and the MS Boost podcast series as well. If you would love to have a chat to someone you can call 1800 042 138 and the lovely team at Plus Connect will always be there to answer.

So, thank you. Please stay on the line for a short survey. A special thanks to Olivia. The work you're doing is fantastic, we're all really excited about it and I think it's really given us a lot to think about tonight, particularly all those factors that contribute to brain health was just such a beautiful image of all the different things that it that you need to live a brain healthy lifestyle and thank you, thank you so much for giving us your time.

Olivia: Thanks Jodi, thanks for giving me the platform to share all the work I'm doing and advocate for