Brain health & why it's never too late to make a change with researcher Olivia Wills

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Jodi: Today I am very privileged to be talking to Olivia Wills who has been doing some amazing research into what is brain health. So, I've coined the term a brain health researcher. I would love to hear a little bit about what you have discovered in your research about what people think brain health is.

Olivia: I like that idea of being called a brain health researcher. I think that sounds very fancy. Thanks for the introduction, Jodi. So, my research, like you said, I focus on brain health, and I've had quite an opportunity to speak to a lot of different people in the MS space about what brain health means and how it might mean something different to different professions or people living with MS.

And one of the first things I did and had an opportunity to do was to speak to people living with MS about what brain health means to them and how that's experienced. And it's a bit of a new term that's thrown around. Now, in regards to MS, since this idea of the ‘Time Matters in MS’ publication that came out a few years ago now.

But interestingly, brain health is something that's still very new to people with MS, and it's a term that they're not overly familiar with, which was really evident that was coming through from these conversations.

So, brain health, typically, or I actually assume that brain health to people with MS would be a very medical approach and viewed very medically minded and very in the regards of cognitive functioning and things like that, but I was taken back a little bit because it meant a lot more than that to people with MS.

So, they have viewed people or people with MS have viewed brain health to be a holistic, a whole life, a tangible concept as opposed to just that medical approach of, do they have a new lesion and is their brain volume changing over time which be might what's coming through in conversations with their healthcare professionals.

But brain health was a lot more deeply connected with them than just that medical approach, that it was about a holistic sense of wellbeing, about feeling good, having a good quality of life. And some people actually said that brain health was everything to them in MS, which I thought was, pretty significant actually.

So, from retaining memory, from remembering functions at work, from remembering people's names and new processes in their job, to maintaining productivity at work, or sustaining meaningful relationships, it really encompassed a whole lot.

So one quote, and I wanted to share this, which I thought was very nice to really sum up what this idea meant was, one person described brain health as this sense of wellbeing, so brain health is a feeling about being positive and feeling healthy. They're 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 how you feel overall.

Jodi: That is fascinating how people attach feelings and that real tangibility to a sense of that brain health is an action. And that's quite different than what I imagine clinicians defined brain health as. What did you find when you had some discussions with the clinicians?

Olivia: Yeah, so speaking to clinicians, it was very, very clear that brain health is very much rooted in that medical entity and being viewed within a medical lens. And there was definitely exceptions to that statement. I found depended on the discipline and the background of that healthcare professional and whether they were trained, I guess, a bit more holistically. Or whether they were trained very medically.

So, healthcare professionals typically viewed brain health as a threat to the central nervous system. So that idea that MS affects the brain, spinal cord, and optic nerves, and that the central nervous system is compromised because of this threat to brain health. So that very medical approach, which didn't really acknowledge that holistic whole health idea that people with MS as they experience MS and experience brain health tend to view that.

So, clinicians through these conversations, they described brain health as protecting functions of the brain that might be related to areas of disease, disability or progression, keeping the brain neuroplastic so it had the ability to compensate for damage, and very rarely discussed that idea that brain health is also an experience, but viewed it as an outcome as such for people with MS.

Jodi: Yeah, I think even as a nurse, it's hard not to, when you think about brain health, not to go to a place of cells, muscles, organs, you know, and when you think of being healthy, you think optimal functioning those sorts of concepts treated, untreated or effectively treated and not managed. So it's default position when you think of health, to think about those sorts of concepts.

Olivia: I agree. With healthcare professional, you know, you're typically a trained tertiary education, you go to Uni, you're brought up really in labs and workshops and dealing with that cellular structure of MS and what might be happening behind the scenes.

So, like you said, I think that's a bit of a default response to turn to that. But I'm really trying to advocate that brain health is more than just that medical approach, but it's affected by a whole lot and experienced by a whole lot with consumers at the forefront.

Jodi: When we think about the heart, like the heart health, you immediately think good strong muscles, highly functioning, all blood pumping. But the brain is very complicated organ and does lots of things. And I think the fact that people added a feelings dimension to it and a almost spiritual dimension to their definition really highlights the complexity of what is a healthy brain? And the things that we may not have seen in relation to what we consider brain health to be.

So really important research for everybody to, I guess, come together to understand a definition that's applicable both to clinicians and to people living, for example, with MS or any other neurological conditions that impact a healthy

Olivia: There are a lot of definitions of brain health, but I think, and we've had these conversations as well, I think we need to probably be a bit comfortable with those number of definitions that are out there because like health, I think brain health means something different to everyone and how it is experienced will be different for everyone as well.

So rather than boxing it into this idea of being medical or being experience only or being shaped by one contextual factor only. I think as a healthcare professional too, we need to be comfortable with the ambiguity of it.

Jodi: We're not comfortable with ambiguity as a general rule, and we much prefer the scientific yes and no's, but clearly brain health is an ambiguous subject. So taking it from the theoretical definition to the practical implications in everyday life, what's your research telling you about what this means in everyday life for people with MS?

Olivia: So, I've really basketed this down to three main points. So, from my research, number one, first and foremost, is that we should try and stop viewing brain health just through this medical lens.

And that listening to people with MS brain health is influenced and is experienced by a whole range of other factors as well. And so, I've used this definition that it encompasses the interaction of biological factors, psychological factors, social, interpersonal and contextual factors, and in recognising that all of these things can influence the health of one's brain.

Secondly, that brain health is really tricky to measure. Brain health is not just a matter of there's a new lesion on your brain scan or that brain volume may have changed over time but trying to encompass that subjective experience of brain health.

So, when we measure it, we should be using a number of tools really in this clinical and research setting to measure and to get the idea of how this is experienced. And finally, the idea that brain health is a tangible concept. So, there's a number of different things that people with MS can do to maximize and live a really brain healthy lifestyle, and what they can do to maximize lifelong brain health and give them a bit of control in a disease where they're very much told what treatment to be on, take this medication because you've got this symptom, but people with MS can actually adopt this idea of living well to nurture brain health and what that might look like.

Jess: It's interesting when you were talking about it being an experience because when you say things like brain health or heart health, I often think of like a checklist, you know, do this for brain health, don't do that, those sorts of things. So what are some of the key determinants of brain health?

Olivia: So I like to use the World Health Organization, they have a really great list of the social determinants of health being healthy lifestyle, healthy environment, physical health.

Safety and security and the last one, lifelong learning and access to quality services as well. So being physically healthy, which we can talk through some strategies as well of what that might look like. Things like exercising, following a healthy diet, the environment in which someone lives and how that can affect brain health and whether they have actually access to clean water, and safe water to keep up hydration and they're in an environment where it's not polluted by smoke and passive smoking and everything like that.

And another big one, safety and security, which is probably arguably one of the most important actually, but feeling financially safe and secure and being able to access services that can improve brain health.

So, things like getting to the appointments, being able to afford follow up appointments, because accountability is a big section or a big part of that as well. And lifelong learning, social connections, so being around people who, who bring you up and support those positive behaviours too.

Jodi: Yeah, I think it's amazing that the World Health Organization have taken such a holistic perspective on all the elements that impact brain health.

We're so used to just thinking, don't smoke, eat well, go do exercise, rather than what are the things around me that are actually really impacting my brain health? And when I think of safety and security the things that you mentioned, but also emergency situations, crises, you know, those sorts of impacts can really have a ripple effect as well, too, in terms of how people's brain health functioning is.

And so, it's so great that they are bringing this bringing this holistic concept into it, and like you said, financial security and safety is such a huge element of brain health, but also what people are able to achieve in terms of lifestyle changes as well, too.

In the interim where we start to understand better that holistic perspective, what would be your main tips for people right now, Olivia?

Olivia: So number one, first and foremost, I think the evidence for physical activity is absolutely black and white in MS.

There's been a number of recommendations now and guidelines that have been published to really support people in becoming physically active and engaging in exercise every day. So there are recommendations online, that people with MS should be encouraged to exercise at least two to three days a week and whether that be between 10 to 40 minutes of physical activity that really gets your heart rate up as well as resistance training.

So things with TheraBand’s and weights and getting active that way as well. I think the evidence for exercise is just so clear. So it's being able to support someone into being physically active, which is then that next step of actually translating the guidelines there.

Same thing with smoking too. I think it, and with the general population, that idea of quitting smoking is the exact same for people with MS. We know in multiple sclerosis that if someone is smoking, that increases their rate of disease progression really, really significantly. And so the idea of quitting smoking and getting support to be able to do that, I think that support is the biggest thing there.

I think most people know that smoking is not the healthiest behaviour, but it's their support to be able to quit that and sustain that which is most important.

An area that I'm really passionate about in as well as managing comorbidities. So in MS, there's a lot of evidence now coming through that people living with things like diabetes or type 2 diabetes, high cholesterol, having high fat in your blood, having high blood pressure, having anxiety or living with depression can as well influence the course of MS. And so, seeking services that help prevent or manage those comorbidities is extremely important.

And a big area that I advocate in is for dietary management in MS, which I think is, number four, of those recommendations.

So, in MS at the moment, for brain health particularly, dietary guidance is really quite inconsistent. It's a bit of a tricky one for consumers that are seeking information online. There's a lot of information out there, but it's really conflicting and really, really tricky to navigate. And so, the evidence at the moment is for people living with MS to follow national dietary guidelines.

So, in Australia, we've got the Australian dietary guidelines for their age and gender. And that really just promotes that idea of eating from the core food groups. There's a lot of research at the moment of this Mediterranean diet as well, which is, quite nicely really reflected in the guidelines with regards to decreasing the unhealthy fats, increasing things like oily fishes and avocado and nuts and things like that.

And limiting things like sweets, alcohol, sugary beverages and salt in the diet to help MS. Under that idea of diet, I think gut health is huge in MS, is huge in probably most areas of research in the moment. It's a big, big hotspot that I think clinicians are interested in, but people with MS seem to be interested in it as well and the idea of the gut-brain connection and the research that's coming through at the moment about people living with MS, their microbiome is quite different to the general population that's not living with MS and why might that be? There's still very early questions to get answers for.

We've just done a research paper on the oral microbiome even, and the link between that and MS, and even that's looking very different as well to what the general healthy, in inverted commas people may look like as well. So, there's a lot that people with MS can do to look after their brains.

And I keep coming back to, yes, brain health, but MS being a disease essentially of the central nervous system, but this is really hard you know, I think me sitting here saying people with MS should exercise, they should follow a good diet, they should stop smoking if they are look after their gut, keep an active mind, and look after mental health, I think those things are easier said than done, and that change is extremely, extremely hard and that idea of the World Health Organization now starting to acknowledge those factors that might affect change.

So being financially stable, having access to those services, being able to keep the upkeep of seeking those services and appointments, that definitely shouldn't be underestimated.

I think as clinicians sometimes we take for granted saying these things are enough and that we say that and that means people with MS will go away and do it, but it's a lot more complex than that. And throwing in a disease like that is already so incredibly complex, I think that can't be overlooked.

Jodi: So true, so true. The challenge of making those behaviour changes. If it was enough to just have knowledge, then we would have a much healthier world, because we would all do better things. I also think that managing depression and anxiety is a huge element to a broader perspective of brain health and being able to implement those changes.

And often we'll use people to guide us like a personal trainer to help you do exercise and dietitian can be a great way to actually help you change, keep you accountable, keep you on track.

I know when I look on Instagram, I'm like, oh, I should be able to do all this fabulous cooking, there's about a thousand things, a thousand different ways. And then you just get a bit overwhelmed and go, I can't do that now. So, yeah. I think gathering your village and the people around you to, to get your brain healthy going and, even having that bit of accountability can certainly be a place to start all those things that you've mentioned.

Jess: And do you think, Olivia, is it ever too late for people to start working on these? Say if you smoke, you drink, your diet's not great and you don't exercise, is it something that's never too late to start?

Olivia: Definitely. I think it's never, ever, ever, ever too late to start changing your behaviour and how you're living. Time is of the essence in MS. Whether you're struggling with exercise, you're struggling with mental health, or you're just, you're smoking because you're stressed.

I think regardless of all of those things, whether that person is ready to make change. There is always time for change, whether that be once they're newly diagnosed, they've been with MS for five years, or they've been living with it for 40.

I don't think there is a perfect time to make change, but I think if people with MS are conscious of what they can be doing to live well and to live as best as they can to improve their health outcomes with MS. Whatever the time may be, you know, people are ready at completely different times.

From my experience speaking to people with MS, they're diagnosed and everything's a bit too hard at that point in time, probably quite understandably. They're being diagnosed with a disease that has just now changed their life. But once they are ready, there's no hard time, it can be whenever.

Jodi: Well, I am going to thank you, Olivia, and we're very excited. To read more about your research and the work that you're doing and really excited that lots of people are investing in brain health research and just how important that is. So, thank you for all that you are doing Olivia, and we will look forward to reading more.

Olivia: Thank you. It's been a pleasure. Thanks for having me.

Thanks for listening to the MS Boost. What are your thoughts about brain health?

Listen out for the next episode of the MS boost, where we discuss HSCT or stem cell therapy with neurologist, Dr. Cassie Nesbitt. Tune in next fortnight to the MS Boost.