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, and welcome to the Raw Nerve. I’m your host Jeremy Henderson. 

Today. On the Raw Nerve we’re taking you back to MS Australia’s 2025 progress in MS Research conference held in Brisbane, Queensland in December 

 MS Neurosciences nurse practitioner Jodi Haartsen delivered the Community Day keynote address. Jodi’s presentation focused on brain health and self-care and left audience members deeply moved and inspired. 

 And moving into the New Year and marking the first raw nerve podcast episode for 2026, we’re pleased to share Jodi’s brilliant keynote with you. 

 Over 25 years of working alongside people living with MS one truth has become clear to Jodi, brain health is about far more than medication or MRI scans, it’s about the everyday choices, connections and mindsets that shape how people live well with their condition.  

 Chair of the Session, MS Australia Head of Research, Dr Tennille Luker introduced Jodi, and we take you there now. 

Dr Tennille Luker 

It’s my absolute pleasure to introduce our keynote for today, Jodi Haartsen from Alfred Health. So, Jodi is an experienced neurosciences nurse practitioner with over 25 years of expertise in brain health and neurological care. Currently, Jodi is the Alfred Brain Improvement and Innovation Lead at Alfred Health, where she focuses on advancing brain health strategies and improving neurological care. 

She holds multiple postgraduate qualifications, including a Master of Nursing and a Master of Leadership, and has contributed to several national and international committees dedicated to brain health and multiple sclerosis research. Jodi today will be talking about brain health, stories, science, and lessons from 25 years of walking the journey with people living with MS. Thank you, Jodi. 

Jodi Haartsen 

Thank you and thank you Rachel. That was a gorgeous introduction. I’m really just a person, a nurse who’s hung out with people for 25 years with MS and been really interested and likes to learn. that’s some, so that introduction made me sound so much more classy than I really am. But thank you and I’m really very honoured and grateful to the committee for asking me to  talk about the stories I’ve shared with people, the science I’ve learned with all of you about brain health. Brain health is a wonderful concept. Brain health, I’ve learned from working with Olivia Wills, who’s a researcher, is that brain health means different thing to different people, so almost everyone’s got their own definition of what brain health means to them. 

So, what it’s done for me, the concept of brain health, is given me a structure with which I work as a practitioner and as a clinician. I was very fortunate in 2015 to work with a global group of neurologists and researchers, economists putting together what was called the MS Global Brain Health Policy, which really set the scene to enable everybody globally to look at what brain health was and to create a focus and a platform. That was recently updated in 2024, the Brain Health Policy. And fortunately, it was a lot more holistic and a lot more person-centered, which was really thrilling to be part of in the first 10 years of my career, which Rachel sort of alluded to was all about the perspective of what is foundational to brain health, which was about the medicine and the biology. And that changed so much. 

I went from supporting people with the dark days of needles and really not seeing a lot of change and really not seeing   people’s lives really, really unhealthy on every level to having the honored position to be able to really introduce new medications that really preserved people’s brains and protected people’s brains from MS. 

Not completely and I’m sure over the day you’ll learn some new acronyms. I’ve avoided acronyms in my presentation because I’ve had three days of very ‘acronym acronym acronym’  but we’ve have learnt that the biology of MS that every one of you here living with MS would know that there is a  relapsing type of MS but there’s also an underlying  progressive  element of MS in the biology and so that’s got some acronyms which you’ll probably learn today for fun. 

So often I’m a bit of a storyteller. And that can trigger people when I talk about things about people living with MS. And I really want to acknowledge that being diagnosed with MS and many elements of your journey will have involved trauma. And that sometimes when you go to these presentations, you hear great things, you learn great things, but it’s something that touches your heart. 

 Please reach out for support if you need support after that and embrace that it is trauma and that you do need support at times.  

I guess what I have learnt is that from people living with MS; MS does ask a lot of you. And when you’re thinking about brain health and living a brain healthy lifestyle, there’s a lot of hurdles and none of it is anybody’s fault. It just asks a lot of you living with MS. 

And these include the things that make life and living a healthy lifestyle a struggle, which is fatigue, cognitive load, all the things which you know and live with every day. But let’s reflect a little bit on the biology and what this means and the science, I guess, is what MS does to the brain. I think that you’re all very well aware of this,  but sometimes when you’re framing a talk, it’s good just to reflect on what the elements are, the inflammation, the delayed messaging,  the damage and the destroying to the nerves, they all build that symptom picture that many of you live with  and that causes life load, fatigue  and challenges the ability to optimise brain health. But what really, when we talk about brain health, protects our brain?  

I’ve changed what fits in about 15 times now because I’d hear things and go, oh yeah, it’s back in the science category. No, it’s not quite in the science category. Yes, it’s in the science category. So in terms of evidence, evidence gives power and it helps us wade our way through all the misinformation that we get and all the different stories that you hear, and I hear them too as a nurse every day and evidence is very powerful, and I value science enormously for that. 

I also value the knowledge that comes from storytelling, from experiences, from people who have lived life with successes and failures. And I try and sit comfortably with both of them and critically appraise both of them. And so, I guess that was my challenge to look at what is science and what isn’t science in some ways. 

So, MS disease modifying therapies undoubtedly protect your brain. And we have seen, thanks to the dedicated work of all the researchers in Australia, the changes and successes that have been made in access and treatment changes. Exercise and movement have, there is abundance of evidence, exhaustive evidence of the value of exercising and movement in MS. And in keeping your brain and protecting your brain and keeping it healthy.  

Sleep? I moved that down in my other sets of slides, but it’s staying there now. There’s variable sleep on the importance of sleep in protecting your brain. I think in other conditions, it’s very well proven that sleep is a very important part. And in MS care for me as an everyday nurse, sleep was hugely important. Not talked enough about, but the impact of sleep was significant in how people lived a healthy brain lifestyle. 

 Not smoking? Proved a thousand times. There’s no need to question the value of that.  

Science that is emerging, and still, there’s a little bit of lack of evidence or confusing evidence, but mostly there is – vitamin D, and reducing stress load. That’s got a mixed amount of research on that one. But I defer then to my experience to say that some people really managed a very stressful life and lived very healthily, and other people did not. But overall, I would say managing stress is an effective way to build a healthier lifestyle.  

Cognitive activities. There was a recent research study that was presented at ECTRIMS that showed that people who did games every day felt that their cognition improved. And that was enough for me, because feeling like your cognition improves is very valuable to feeling like you live a healthier lifestyle. 

And sticking to your diet is a hard one and we’re going to hear lots more about diet today so I’m just going to say that sticking to the Australian food guidelines like diet and has got fairly strong evidence about that about Improving lifestyle. 

Not fully science yet, but if you asked me, I would definitely say that what warrants more study is stress management, which we’ve talked about. 

Financial stability wasn’t something that we talked a lot about in MS, but particularly when you’re diagnosed, many people first worry about the money. And no wonder, you know, it’s such a threat. And lots of people do not know what to do. We know in the recent work the cost of MS, but we also know the implications for losing work, living with MS, for the loss of income. So that financial stability and navigating systems to support, to draw on resources. I just think it’s probably an unmet need in MS and something that when I worked for MS Plus, the state organisation for New South Wales, ACT and TAS, I certainly tried to put some effort into supporting people with financial stability. 

Purpose, living with purpose, is such an important part. If you asked any psychologist, they would certainly say that this is one of the keys to brain health, getting involved in nature, gratitude, and many other dietary factors which we’ll talk about later on. 

Health is also grounded in your social context. And that was certainly a very evident part of my clinical practice and becoming more and more an area of research and lots of evidence is building about how much, what we call social determinants, impact the  outcomes of people with MS  and many of you as I’ve talked about before if you are living with unemployment  then that’s going to be the focus of your life because you need money to live.  If you are living in an unsafe environment where you are being physically or emotionally abused that’s the core not meeting the safety needs. They are the core to a healthy lifestyle. 

These areas, if you live without water, good water and sanitation, fortunately in Australia that’s not many of us. If you have no access to healthcare services, these are foundational to health, and they are the context which brain health sits within, and we often need to dedicate a lot of time in clinic to supporting people and it’s long and it’s messy. 

But what can you do? So, moving a little bit from social context to creating your own environment to be a strong and capable you. And as a nurse, that’s always been my focus. It may have had different terms, it may have had been a different way, but it’s always about building people’s capability. 

 Because I know, and I always knew, that people see me in clinic. Towards the end I had a lot of patients, so it was very random. But my job was to support people to build their own capabilities, to walk out that clinic door, get some good knowledge from me, but then be able to set up their environment to create the best, strongest version of themselves. What was the way that I could do that? And so, I looked toward behavioral sciences and brought together my experience and thought and sort of created the four engine rooms of building your own capability. 

And one of them is identity. I’ll start with identity and it’s people like me who do this. So, this morning I decided to live my own philosophy, and I went for a walk and I’m like, no, I am going to be a person who loves sunshine. So, after five minutes of being sweaty and repulsive, I’m like, yeah, no, I’m shifting that identity and I’m going to be a person who gets what I want done in good air conditioning. And so, I think, so it kind of, it was a quick flip, but I was like, yeah, no, that is not my identity. It’ll never be. Take me back to Melbourne where it’s freezing cold. It really was too sweaty and disgusting. I think we do, the things that we tell ourselves about who we are matter significantly. 

And you can have a person who identifies as healthy living in a wheelchair. And you can have a person who identifies as having poor health, who is working full time, doing what they want to do. So, it really matters how we identify with, who we identify with. And even though I shifted to saying I was a good air conditioner seeker, It was still a strength-based shift.  

I switched from being, hate the sun and I can’t function, to, no, I’m just going t be a person who functions in air conditioning. And so it is that messaging which you tell yourself. And I was like, oh, really? Chuffed with myself then. thought, yeah, good on me. And so, I think it really matters what you tell yourself when you’re thinking about being a brain healthy person. 

I am not a person who smokes and I’m not a person who eats bad food. And that takes work. You’ve got to tell yourself over and over and over again and there’ll be failures. We’re all human. But I think it really does make a difference. 

The other one is emotion. Hope, meaning and belonging. And it was beautiful to hear Rachel talk about the importance of belonging. And in my time at MS Plus, I learnt the value of peers and community and the importance of validation. 

And it doesn’t need to be feeling that sense of belonging as a part of a community where you aren’t alone. And it doesn’t need to be that you talk to someone every week. It just can mean that moment when you meet someone and think, yeah, yeah, okay, you get this. I’m right now, I’m right now. I’m not there, I’m not alone for the rest of my life. It’s equally important for the people who are in the roles of carers. That’s so important too, that they get a chance to say yeah, yeah, yeah, I’m not alone. Okay, on with the show. It’s just such a powerful thing and Rachel just really showed that beautifully this morning, so I need to talk no more about that. 

And also, the value of hope. I am a naturally optimistic person which is lovely. I am utterly convinced that every single person with a diagnosis of MS is going to be fine. 

I know that’s probably not the right reality, but in my mind, I’m doing every damn thing I can to get them there. And so, I work hard. Optimism is natural for me, but I work hard to be hopeful. I work hard every day to say, how can I do better today? How can I be more hopeful? Because every day is sort of something new. And I think that that’s really important for people living with MS. If you ask me to share things that matter in having a healthy life, with living with MS, I will say a sense of hope. It’s really such a key in resilience. Ease, making life easy, removing the friction. You we often don’t reflect on that. And you will see that I’ve given you a few brain health reflection guides, because I want you, everyone in MS, people with MS are my partners in the journey, so I thought I’d give you something to do and reflect on; a lot talks about that making your life easier by reducing the friction and the things that make it harder.  

And energy management. Energy management, we tend to sort of call it, I prefer energy management than fatigue management because you’ve sort of got a limited amount of energy, but you’ve got some so you’re learning to use it in the right way. 

So just going back to that identity, behaviour sticks when identity is shared. I’m going to hang tight to my air conditioning and that’s going to be my new identity. But it takes work and behaviour follows when identity is shared with yourself, I guess, aligning what you want and what you need in your life. 

Connection is medicine. There is emerging evidence about the value of connection, and it worries me that we are becoming a more and more socially isolated society and that we are losing that incredibly valuable connection. It’s really about who’s around you in life and health, isn’t it? Like it’s so much about who’s around you and the people who you are with every day and that social connection, and lack of social connection has, there’s abundance of evidence to say that it worsens brain outcomes and disability outcomes.  

Identity loss also limits behavior capacity. And certainly, when you’re newly diagnosed, your identity changes forever on that day. You know, the day you get diagnosed, you are the same person that you were the day before, but you’re kind of not, because it’s there now forever. And that doesn’t mean you still can’t do whatever you want to do. 

You may just need some modifications, but it is a sense of who you are and that’s such a hard part that only the person can do. Getting back to your own sense of who you are now living with MS is such a difficult challenge. Who you are now as a carer living with people with MS, that changes your identity as well. 

And so those identity shifts, not quite as hard, but those identity shifts, they really impact that first couple of years. So, if you are newly diagnosed, it’s okay to sit with that and take some time. And it’s definitely okay and very valuable to get some support as you grieve the loss of your previous identity. Belonging and purpose drive motivation, and neuroplasticity.  

I’m sure many of you can be a testament to that. So, I guess I’ve included some top tips from my experience and the science as well too. So, these are just looking at some ways that you can define the difference between social isolation and loneliness. And those two are different things. And it’s important to be able to know within yourself when you’re feeling isolated. That’s quite easy to address. But when you’re feeling lonely, it’s much harder and there’s different characteristics of that one.  

So, it’s important to know and understand the difference between those two and the distress that often goes with loneliness. And MS can be a very lonely disease. In terms of looking at the engine that is your emotional state and your emotional capabilities, it’s not just emotional. Emotional state does affect how your brain works. It affects how you live your life. 

A calm or emotional state will make learning and change much easier. I often think as well too, if you’re sad and depressed, it’s going to be very, that’s also another bedrock. It’s like a social determinant of health. If you are feeling, if your mental health is poor, it is very hard to address the rest of your health. And it’s really important to look at that and get some help with that and address that. 

And you need to feel positive, and you need to feel safe. I love again that Rachel brought up that sense of safety, that sense of safety with your emotions and where you can be who you are and be validated for who you are. And as you gain emotional strength, often you gain a sense of capability to be able to do behaviour change. And a lot of brain health, aside from medications, a lot of brain health requires behavioural change. And that’s why I am very interested in learning about behavioural change because It’s hard, it’s in the hard, the space of hard work. 

So, my top tips are seek help where you need to. There’s many ways to do, to seek help. I also really love a simple five, the five simple ways to wellbeing and that’s connect, be active, take notice and keep learning and give to others. um It’s a mental health strategy, but I have it on my fridge and I often, I gave it to lots of patients and said, just check yourself every now and again. You do lots of checking of yourself but check yourself. Am I giving to others? Am I, you know because it’s a very important part of mental health. Am I actually connecting with enough people this week or has it been a few months when I’ve really kind of lost that sense I’ve got busy with other things and I’m not really doing that? Am I spending enough time taking notice of the world around me and being mindful? It’s just a really simple kind of tool to check yourself in your mental health. 

And there’s lots of different resources to be able to do that as well too. This was just my simplest one and I defer often to the simplest. I’ve talked a little bit about hope and the importance of hope and how hope requires work. 

And behaviour, lots of behavioural therapists now have taught me that behaviour is designed and not willed. If we all depended on motivation and willpower, not many of us would succeed. 

Knowledge is another thing. Knowledge is very powerful, but it won’t change behaviour because if it did, there would be no smokers and there would be all thin people, and no one would eat bad food. Because we all know that those things are bad for us, but we all have to work to change our behaviour. 

And emotion and how you feel will always beat the logic of knowledge. um The less effort will always mean that you’re going to be more successful because we are by humans defaulting to the less effort. um And again, going back to identity, how it can drive action and drive change. 

So, it comes back to setting up your environment. And I really like thinking about environment as a treatment partner. So, get your environment to do the heavy lifting. And we often don’t reflect on the things that are making life hard for us. You might hear about a lovely study that they’re doing looking at how you can do some wearable devices that look at your walking in an everyday practice. 

So, for those people who are struggling walking, it can be something that just thinks, I didn’t realise that every time I go into this room, I’m going on a gradient up and I’m always at a risk of tripping. And so, there’s often things in our environment which aren’t making it easy for us. I mean, a simple example is getting rid of bad food in your house, but there’s lots of ways which we don’t set up our environment to make life easier for us. The Employment Support Service in Victoria really focuses on workplace environment and how simple things are. I recall a patient who  was driving every day to work and had to park outside  and his car was always hot and the employment service  just gave him, just organised that he had a car park underground  and it gave, he said it changed my life, my working life and all they did was fix that little environment bit, said I wasn’t hot anymore when I got home,  I wasn’t in a hot car. I didn’t worry about where I was going to park. I didn’t have to take that extra energy to go. It was such a simple fix, and he had not thought of it. He had not thought about that environment that was making it so much harder for him. And he shifted from really finding work an extraordinary burden to having much more pleasure in work.  

Heat is such a big factor and Melbourne does occasionally get hot. So, shifting that for him was just incredibly powerful. So, we need to think of our environment, lessen the friction, lessen the things that are making life harder for you to enable you to have the capability to make the behavior changes to live a healthy life. And environmental cues can also support or drain you. Look around. Often, we will love a bit of cleaning up and tidying, but for me and for lots of women I talk to every day, it’s the one thing we control, having the pantry tidy, pantry tidying. How many people know about pantry tidying? The only thing you like when you’re having a terrible week, life’s in absolute chaos and you ring up your sister and say, what are you doing? Just cleaning the pantry. Yep, that gives a sense of control and it’s environmental cue that says, I’m in control of this, I’ve got my life here, I’ve tidied the pantry. And so, I think there are the sorts of things that really show how much environment matters to brain health. 

Also talking now about your village and the people around you. Some people just need a little nudge in the right direction for behaviour. Other people need a tribe. And a tribe is so valuable. And it’s the right person for the right job at the right time. And I talk a lot about this to patients um or to people living with MS uh and to lots of people actually, because I really like talking about it. We often assign jobs to people. The physio job is exercise. The OT job is helping me with work. The neurologist’s job is to give me the information and to keep my disease symptom, treat my symptoms and be biological. And it kind of liberates you when you think beyond the person to what the job is. And there’s some beautiful work written about the different types of things that you need for assigning people to these different roles.  

Now in terms of looking at network support, let’s choose network support. Network support is the support that kind of helps you know who the right person to contact is. Now some people will depend on their neurologist to do that. They’re the ones who are going to help me with my health journey. They know so and so, they know so and so. Other people might know a fabulous community connector like Rachel and because she is definitely a community connector and she goes no don’t go to that MRI place  you can never get in they’ll charge you a fortune they’re quite rude  go to the one down the road  and then and that has made that part better of your life so  it doesn’t have to be the one person  you know think,  stretch yourself to think actually maybe there’s a better person who can do that networking  than relying on this person who’s historically is not doing a great job for me. 

Other people have great relationships with their GPs, and they are the ones who are kind of really helping them with symptom management. They may not know a lot about MS, but they learn, and they really work with them. So, their neurologist visit just becomes a bit about, oh it’s great to see you and I’m glad you’re there doing the research, but the GP is the one who’s really getting me on board with my health and doing all those other things. For other people it’s the nurse down the road who’s able to do that. So, I’m trying to think about dividing up those things. Who is going to give me that emotional support? Who’s the person I can come and cry to? Who’s the person who will give me the practical support? You know, assigning that to when I’ve had my own health crisis is I look at the list and think, yeah. 

I love my husband but he’s the best for practical support and I won’t give him anything else because he won’t meet expectations. I really have to rely on my network of girlfriends for that one because he’s lawnmower slash bin and he’s great at that. And so, I don’t expect him to be anything else. He’s just my practical support and so that kind of sense of and who’s your esteemed support? Who’s that person in your corner who says you’ve got this, go, go go. You can walk today, or you can do what you need to do today, you’ve got this. So we can sort of assign different roles to different people and I think that’s a really, being the CEO of your team  at any given time, doesn’t matter whether you’re newly diagnosed or halfway through,  you can sort of assign roles to different people and say,  people want to be helpful, people really want to be helpful, most of humanity wants to help each other.   

So, hold on to that and give them jobs. And maybe you don’t even have to do it mentally. My husband doesn’t know that I only assign him practical help. He still thinks he’s my best companion, not Kate, my bestie. So, you don’t need to tell them necessarily. But in your head, you’ve not set an expectation. A lot of us have expectations about neurologists. And I have worked with the most kind, compassionate, I would say far more neurologists are kind, compassionate, but I know that they’re not all like that. And I know they’ve only got half an hour. 

So maybe we expect a lot from them in that half an hour. And so just thinking about what can I get out of that? But where can I get other things that I might need? That is not that they’re not likely to talk to me. They’re not likely to give me the emotional support that I need. So where else can I get that and who can I go to for that? And that’s a bit about assembling your healthcare team. All the way we need to revise this because it’s such an important part of brain health. They’re such an important part of your team. 

So, the key thing is accessibility. Parking. Parking. How much does parking matter? I will just completely change health GP services if I can park. Parking matters to me. And so, accessibility. How accessible is the person that you’re seeing, and do you need to go somewhere else which is more accessible? 

Because it does really matter. If you are waiting four hours for an appointment and you’re exhausted, sometimes there’s no choices. Other times you just think, know, like, don’t know whether I’m getting the most out of this. Maybe I’ll just you know, find another avenue to receive the health, the overall health care that I need. Alignment with your values is also really important and creating that safe environment where you have the opportunity to. But again, about those expectations, maybe that’s just not the right, that’s not what you need from that appointment there in that, with that person. Maybe that’s what you’re going to get from the physio. 

There’s a lovely physio from MSQ and I reckon he’d be a great person to find that time, that validation, that energy that you need from a healthcare professional. And also getting your admin sorted. That’s huge. How many times do you go to any healthcare professional, and you waste a good part of your mental energy, their energy? 

Wishy washing, waiting for results. When did you have that? When did you have that? I feel like I’ve spent 25 years saying to people, get a folder. Stick it in your car, keep it in your car. Lots of patient portals are popping up. They’re such powerful tools to take control back. 

 So I’m running out of time. So in terms of financial wellbeing, I’ve talked about the importance of it. There are lots of different support services available in and outside of the NDIS. And I encourage you to contact your state organisations. They are across all of this if you need to. 

I’ve also talked about the importance of structuring your energy, environment, and the importance of sleep. Better Sleep and Better Health is a fabulous website with great resources. I encourage anyone who has sleeping issues. It’s complex with MS. A lot of the times the symptoms and sleep interplay really does need neurologist interventions. But for other examples, this is a really good kind of overall picture of how to manage sleep. And also the importance of self-care. 

Sleeping, eating, breathing, moving. You know, sometimes it’s just the basics. And it’s often just the basics. What to not feel guilty about? Do not feel guilty about fatigue, needing help, saying no, brain fog, needing rest, or needing scaffolding more than you need motivation. Scaffolding is about the supports you put around yourself and it’s often far more valuable than motivation. 

Five things that you can do this week. I’ve given you all some tips, but here’s one or two, or five things that you might think about that you can do this week, a practical thing to think about. One tiny brain micro workout, bit of wordle. Connect and text message, just that message, say, hey, hi. And that person will say, hi, nice, okay, good. One friction removal, maybe that’s putting your toothbrush in a different place. Just five little things.  

So what I want to leave you with. You’re not lazy, MS is hard. Your environment matters and more than your willpower matters. Connection protects your brain. You deserve and need a village. Tiny steps count and you are allowed to ask for help. 

And thank you to all the people from Melbourne who have shared their stories with me because it matters so much.  

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.