BeewellwithMS discusses brain health and increased in prevalence neurological brain condition such as Multiple Sclerosis (MS) and how our brain works living with MS and what is the connection with our thinking, emotions, physical and general health.
1 January, 2025 Guests Interviews and Charity events
Exploring Smouldering MS: Insights and Innovations with Prof. Gavin Giovannoni and Prof. Jeremy Hobart This episode of 'BeeWellwithMS' features an exclusive session from a webinar in the Southwest of England, hosted by dr Agne Straukiene with guest speakers: Professor Gavin Giovannoni and Professor Jeremy Hobart. They delve into ground-breaking concepts like smouldering MS, brain neuroplasticity, and innovative approaches to MS care and treatment. If you would like to participate in Saw Index clinical study and share your knowledge living with Smouldering MS contact the Research team: saw@transformms.org www.transformms.org/saw-research
Hello, my beautiful Be Well With MS listeners. Today's episode is something truly, truly special. We are bringing you an exclusive session from a webinar in the southwest region of England, where we normally discuss the research that is happening in the southwest of England, and we are trying to share the word, with our listeners and people who are local in the southwest of England. So I recently hosted featuring 2 of the most respected names in the field of multiple sclerosis. One of them, professor Gavin Giannoni. Who doesn't know Gavin Giannoni? Everyone knows. And professor Jeremy Hobart, another figure in MS field. This conversation dives deep into the groundbreaking concept of smoldering MS, brain neuroplasticity, and innovative approaches to MS care and treatment. We also explore bold ideas on bridging gaps in MS services, something I know is close to the hearts of many in our be well with MS community. This isn't just a webinar replay. It's an opportunity to hear first hand from world renowned experts about the evolving landscape of MS care and how it directly impacts the lives of those living with this condition. Whether you're here to learn, connect, or find hope, you are in the right place. Let's tune in and be inspired together. Now we are truly, truly fortunate to have 2 distinguished leaders in field of multiple sclerosis joining us tonight. I'm excited. And I I believe so that everyone else who is now online watching this, also very, very excited. So first of all, professor Gavin Geminoni is a pioneer clinician and researcher whose whose work has been brutal in advancing our understanding of MS, including the concept of smoldering MS. So we are very grateful and thankful and its implications as well for progression and treatment. His contributions have shaped global MS care and research. He is the most influential person in MS world, and he runs his self management platform called MS Selfie. You're probably very much aware of that. Another professor tonight is professor Jeremy Hobart, an exceptional clinician and academic. We used to work together when I was in, well, we used to be, one of the neurologists in Plymouth. Now I'm at Torbay. So but he was my supervisor, my mentor, and we still continue having discussions, and and I continue having supervision, which is amazing for me. So he's widely recognized for his patient centered approach, to care and his expertise in developing outcomes that matter to people living with MS. His work bridges the gap between the research and the real world clinical practices. So both professor Gavin Girononi and professor Jeremy Hobart need no further introduction as their accomplishments and leadership in MS community speak for themselves. So let's bring them into this conversation, and I would like to just give you a bit of a heads up and and and explain the the main focus for tonight. And for people who joined us later, we're talking about the smoldering MS, and and it's most pressing and unexplored topics that we want to talk is the concept of smoldering MS, what is it, and why it matters. It's it's important for us all to know. Then we would like to talk a little bit about the neuroplasticity and its potential offer to to hope and also brain resilience in MS. We also we know the hot topics and and your your concerns if you're living with MS and many other health care providers who works in multiple sclerosis. It's the gaps in MS care and including the shortages of the specialists and how we might address them. We will bring some some ideas here, you will see. And also, we'll we'll touch a little bit on bold ideas, forward thinking, innovative approach, and discussions on the future of MS diagnosis and management. So as you can see, we have carefully crafted the plan to ensure that, it is going to be an inspiring and thought provoking discussions for the MS community. So without further delay, let's begin, and, let's talk about the smoldering MS to start with. So first, perhaps maybe, Gavin, I would like to bring you into this conversation as as you're the bravest out of all of 3 of us. I would like to know a little bit more and and understand, the mechanisms of the smoldering MS and its role in progression. Yes. So thanks, Agni. I mean, the smoldering term actually is not new. It is actually probably used for the first time in the 19 seventies by 2 pathologists, John Preunius and Cedric Rain. And they looked in the brains of people, who had died of multiple sclerosis post mortem, and they'd seen these these little lesions, what they called the smoldering MS lesion. And it was really a, a lesion that had this cell called the microglia and was still active even though people had had the disease for 50 years, you know, when they had passed away from the disease. And that was called smoldering, they're smoldering MS lesion. And then George Ebers, who's a neurologist from London, Ontario, he had made this observation in the nineties that, relapses in the tax of people have contributed very little to disability in in the illness. And actually, they don't predict disability at all outside the 1st 2 years in their dataset. And what he was seeing was this gradual worsening that people, experienced. He didn't call it smoldering disease, and nobody really accepted George's ideas. And so we then rediscovered them. So one of the observations came from the nadaluzumab tysavory, you know, dataset, where despite most of the people being rendered free of, attacks relapses, were getting worse, were getting worse with time. So, and that was referred to as PIRAPigression Independent of Relapse Activity. Now the problem with the term PIRA, it happened it's something that happens in clinical trials because you have to get monitored every 3 months, and there's a specific way of defining what progression independent of relapsed activity is. And at the same time, there was lots of other evidence emerging, you know, to say that that wasn't adequate to explain this concept. So we, you know, we put together this term called smouldering multiple sclerosis, which is an umbrella term and it incorporates many things. It incorporates what people with the disease talk about. You know, they often describe themselves as getting worse without having attacks and their MRIs may be stable in terms of new lesions. We can see it on MRI scans. We can see it with biomarkers. We can, there are different ways of measuring it. So the term small ring actually captures the hidden symptoms or the symptoms that people with multiple sclerosis have that we don't see, the ones we can see, and various markers on MRI. So that will so this is what I think the disease is. You know, and when I actually the more I think about it, the more I think that the attacks we the attacks people with multiple sclerosis have relapses, and the lesions that come and go is not what MS is. That's actually the immune system's response to what's causing the disease, I think, and, and the diseases in the brain and spinal cord. And even if you remove those attacks and those, that which you can see on the MRI scan, they still got going on inside the central nervous system in the brain and spinal cord. And that's what concept is moldering MS. Does that make sense? Yes. Yeah. Yep. So almost like, for me, it's like we're finally now giving a name for the domain in MS that is invisible. So a lot of people come and we say, well, you haven't got a you haven't got a new relapse. You haven't got a new MRI scan changes. But then the patient who comes to you, they they feel like things are changing. But Yes. You know, not necessarily yeah. Yes. I don't like the term invisible because invisible means you can't see it. And I think we can see it. We just gotta use better tools. And this is where Jeremy should come in. One of the things we now know is that lots of the clinical tools we use to monitor MS, the so called EDSS, expand disability status scale, are just not good enough to capture this process. You know? So, Jeremy, maybe you wanted to talk about why we need better tools to capture this process. Yeah. Yeah. The, the ability to to assess and measure diseases very well is is increasingly important as we move beyond the standard methods. And, and the methods that we've had have been around for a long time, and they're very insensitive to, differences and they're very insensitive to the spectrum of problems that people have. And that's why we need to move to a new era of, of instrumentation, enabling people with MS to, to complete these, as it were, questionnaires to on which we can derive information that gives us a more accurate understanding of of the disease. And we've seen this, and and I'm sure many people on the, in the audience will will have, experienced situations where they are getting worse, but the the parameters that have been used to assess them, that is their their standard MRIs and their standard disability measures don't reflect that. And that always leads to a very difficult, conversation and, and and a very disheartening situation for people. Absolutely. And I think, you know, when we're not asking or not measuring, so that becomes invisible. Like, nobody knows about this point of view, like but actually, bringing more innovative ways of assessing, asking the specific questions about this domain in multiple sclerosis, and you can then highlight a lot of issues. But I think understanding of the of the process and knowing that from real people, people living with with MS, this is where the the all information and data that then could drive us to develop measurements, to develop right treatments, but knowing what it's like to live with smoldering MS is the key step. Right, Jeremy? Yeah. I I think just as of yet, we haven't done the hard yards of this, which is is the detailed, qualitative work with people with with gradual worsening MS. We do lots of cross sectional work with people, but not longitudinal understandings of of how their problems are changing, and evolving over time. So that's a a piece of work that is that is just started and that, maybe I'll mention a little bit more of it later. Yeah. Agnie, can I make a point? Because as Alvin brought up, we do know that we do know that this process begins very, very early in the course of the disease. So that's the other thing. Even in people who don't have a diagnosis yet, you know, are asymptomatic, we can detect markers of small ring disease. So this would be asymptomatic MS in the sense that individual who hasn't had any obvious symptoms, you can find markers of the disease. And the other point I wanna make is it's quite clear not everybody gets smouldering MS because, a significant number of people who get to post mortem in old age as part of studies and found to have MS in their brains at post mortem. And there was this big study in Denmark where everybody used to have post mortems, and they found that a quarter of the people that had MS at post mortem were never diagnosed in life. So what probably happened in those people, whatever caused them is that their own bodies cleared it. And we also know in life that, there are people who have, in retrospect, what we call benign MS. They get to old age with MS with no disability, and they've been stable for years. So they so there's something about those people that cares the MS, and they don't have smoldering disease. So I just wanna stress that not everybody with MS necessarily gets smoldering disease. There's something and some people obviously deal with the disease and care care the disease, whatever it is. We are interested, can we see the effects of smouldering MS on MRI scan, on the conventional MRI scan? A lot of people ask this question. Can we dig deeper and understand the processes? Can we see it? Maybe, Gavin. We don't look for it in routine scans because the kind of measurements we look for are are not reported by radiologists because they need to take those images and process them offline, and, the current current scanners don't do that. But if you take the brain the MRI scans and you do serial scans, you'll see accelerated brain volume loss, the brain shrinking a bit faster. It actually happens in everybody because aging causes that. But in people with multiple sclerosis, there's a more rapid, brain shrinkage, and that's we think is smoldering, a that's a marker. And then some of the lesions, have we seen multiple sclerosis get bigger? They get they call them slowly expanding lesions. And some of them have this rim of iron around them with a magnetic resonance scan MRI scan. You pick up the sign, and we think what's driving those lesions is some of the pathology that we think is small. So, yes, there are techniques on MRI scanning to measure these processes, But as of today, they're not in routine clinical practice. Do you think they will come into routine practice? Because the diagnostic criteria, where MS are gonna change, they're gonna include paramagnetic remuneration. So Well, I I hope so, Gavin, because we're we're, we're selling people with MS scores at the moment in terms of the the the evaluations that that we can do at important stages in their in their disease journey. But but I guess that that takes us into the arena of of care delivery and the the ability to to deliver these types of of of, these types of imaging processes widely for people and regularly. I guess the other thing that that that then comes in is the is whether, there are potential blood measurements that could be used to give a, give an indicator. And there's a lot of interest in neurofilament as a as a as an indicator of, of an active process within brain to spinal cords. And if we could, roll out those sorts of measurements and they could be proven to be valuable, then it will be a much, much easier way of monitoring people on a regular basis. And there is some talk of of capillary levels. So much like diabetics, they use fingerprint measurements to measure some of their their, blood levels, then that may become available at some stage with, the neuro filament. Wonderful. This is what we want to hear, the easy you know, not a lumbar puncture, but the bloods that we could easily extract from these patients even if it is a pinprick, to check for these levels. That would be, fantastic. And on the other hand, as you can see from the MRI scan, we can tell there is an element of the smoldering MS, but almost, like, in retrospect. Nothing is that, like, you know, in a we can predict or there's nothing that we could see that right now. Sometimes we do, but not always. And I think, all also, we have to emphasize the communication gap. How we communicate as a health care providers with our patients, and how how we extract the information from the patient, Jeremy. You know, maybe it's it's your it's your sort of way of thinking, you know, patient reported outcomes and challenges and and the importance of identifying this smoldering element. Can you talk a little bit on on this sort of communication and how can we, you know, get get this information from the patient? Yeah. I think, so Gavin and I were at at a recent meeting, and there was a a presentation of from a European survey of people with MS. And over 50% of people said they found it difficult to articulate their symptoms to be, healthcare professional. And on top of that, healthcare professionals usually don't have the time slots within their their clinics to to give people the time to work through the understanding of the degree of problems and the breadth that they have. So we need we do need methods to assist people in those consultation. And, and I guess that's the concept of of assessment and part of the the role of of detailed qualitative work in in people with, gradual worsening in MS give is giving us the degree of breadth and depth of that information to enable us to construct instruments that we can use in clinical practice to assist people with MS in communicating with their clinicians and clinicians understanding the, the breadth and depth of problems that people have. So, Jeremy, do you have any concrete ideas? How can we do that? Is it, like, 4 questions questionnaire that we can bring into the clinics and and get some sort of extra questions during the consultation that we could feed that to the, you know, research and and then assess as yeah? Yeah. I think that certainly the, those sort of structured, almost structured interview type processes can be really valuable for people in terms of helping them to to, to articulate through, through what is essentially other people's experiences, the the degree of problems that they have, and that can then feed into clinicians. Now how that will work out in in real time is, is a little bit uncertain, but the the concept of structured information is a way to is to assist that communication gap that you've highlighted is important. Are there any clinical trials planned, in the future to look into this specifically? Just in terms of clinical trials, I don't think, but certainly in terms of clinical studies to to, do detailed qualitative work in people with MS. And we're we're, involved. Both Gavin and I are involved in in one at the moment looking at people with smoldering MS. We're actively recruiting. So, I can share a slide at the end that that gives people the the, the parameters that we are we have for recruitment and if and also the, email and web links that they might wish to look at. Okay. There is a hope, people listening to this. There is really a hope that we could, all as a team contribute and and actually be active participants. And it only enhances the better understanding what is the smoldering MS. We know details, but we want real wild, real lived experiences. And and that's coming from you living with MS. Now brain is affected by numerous amount of lesions living with MS. Brain is affected by neurodegenerative process. Brain is affected by smoldering elements of MS, and that's a sort of a chronic inflammatory diffuse process. But there is a hope that brain has got a huge neuroplasticity, a capacity, and a resilience. And let's talk about this and give a bit of a hope to the audience. So, Gavin, briefly explain the the science of neuroplasticity and its potential in MS. Well, neuroplasticity really means that what's left behind in MS is not reversely damaged, can adapt to the damage and take over function. So it's actually like repurposing, existing pathways or, to recover function. That's what I could a plasticity could occur at multiple levels, but I'm talking at a in an over overview of plasticity. And there are many mechanisms. I just wanna let people know it happens at, at the sinus, at the end of the nerve fiber, happens at the axon, and it also happens, centrally in terms of the cortic the surface of the brain, like what we call cortical plasticity. But I think the bottom line is if you've lost a function, can you retrain the brain to to regain function? And I think there is ample evidence, of, ability of plasticity. And I don't know if Jeremy is gonna talk about a particular there's a new drug that's just been shown in a in a phase 3 trial to target smoldering MS and slow down the worst thing that occurs independent of relapse activity. And what is remarkable, that was actually done in quite advanced secondary progressive disease. These are people that were not having relapses and their EDSS scores were really high, close to 6 on average. And the and what was remarkable is that the people who were on the active therapy, there was a significant improvement in function relative to the people on the placebo, the dummy drug. So even in people with advanced disease, there's this, plus there's there's this ability for the nervous system to recover. But I think what's really, really important, Agni, is what we don't do enough of is it's the old saying, if you don't use it, you lose it. So when people are losing function in the pathway and they're noticing that things are deteriorating, they need to have targeted rehabilitation to because the stimulus for recovery of function is actually physical activity or and same with cognition. If your cognition is not as good as it should be, doing cognitive rehabilitation improves cognition. So it's all about the stimulus. And we haven't up until now, incorporated what I would call, I say, targeted rehabilitation because there's no point in rehabilitating a fully functional pathway. I mean, that's called pre that's called pre rehabilitation, but if but we should have targeted rehabilitation in pathways you want to recover function in in trials. We just don't do it in trials. Yeah. So if we combine the disease modifying therapy and one of the promising that Jeremy Hobart is gonna share his, few slides on on this new drug that is in the market and is fantastic in in controlling the disease and and the progression and element of the smoldering MS. But also if you combine that with the lifestyle approach, and as as Gavin just said, you know, targeted personalized lifestyle, you know, you you are really on the good books. You're really, you know, controlling the process and and and enhancing your brain neuroplasticity and brain reserve. And if you look at the, Professor Krieger's model of topography and brain reserve, you know, you know, we don't want to waste that pool of water. You know? We we want to keep that volume of the brain. And if we combine these approaches together, I think we we are achieving the goal here. So, Jeremy, over to you to explain a little bit on drugs available for smoldering MS. So there is a drug called toliubrutinib that, has been studied over the last few years, and the results were reported at the big MS meeting in September in, in Copenhagen. And that big MS meeting is called EKTRINS. It's a funny name, the European Committee For Treatments and Research in Multiple Sclerosis. But essentially this was a study of, a new drug in people with gradually progressive MS, but who did not have relapses essentially, and acute inflammatory activity. And this type of drug is called a BTK inhibitor. And that stands for Bruton's Tyrosine Kinase inhibitor. And it's essentially a drug that blocks blocks an enzyme that is involved in various pathways. And in this, large international study, they, randomized people. So either that the treatment that polybrutinib or to a dummy drug or placebo. And then they monitored people over the subsequent, 36 month or so. And the main so called outcome measure was that the time to the, to accumulating progression at 6 months. So confirmed so called confirmed disability progression at 6 months. And the simplicity of the results are that less people got worse, but not only that more people got better, which is Gavin's point about, feeding into the discussion we've had just a few minutes ago on neuroplasticity. Now there was a 30% reduction in the proportion of people who, who got worse over time, essentially. And there was a, a doubling of the proportion of people who got better during the start. So less getting worse, more getting better, which is a, which is a very positive finding. And this is in people without inflammatory disease, without active inflammatory disease at the time of the study. So so we believe these people to have low grade so called smoldering disease. And and if you look at the treatments to date, the the majority of them have been aimed at the inflammatory aspect of the disease, the acute inflammatory aspect of the disease that gives relapses and new abnormalities on the MRI. So this is this is a a a an enormous contribution to the, the future of MS Care. And, and this drug has just gone through the FDA in the US, and we'll go through the, the processes of regulatory assessment in Europe. And then when it goes through that, it has to go through the local processes for each individual country. And for us, that is this entity known as NICE, National Institute of Clinical Excellence, to determine whether and how the drug will be made available to people. The the sadness of all these situations is those processes take so long to to play out in in in reality. However, the, this this is a this is a fundamental step in the in the management of of MS and its future is the finding that a treatment influences this non active, this non acute inflammatory nature of the disease. And that, I think, opens the door for combination treatments. So, Gavin, I'm gonna ask you about what do you think about combination treatments in as the future of MS? Yes. I mean, people need to be aware that this particular drug, the way it works, it's got 2 modes of action. It actually does have an anti inflammatory effect and a effect on the smoldering processes in the brain as microglialis. But I mean, that's gonna have to be the future of MS therapies. We're gonna have to give both treatments, you know, an anti inflammatory, or and then combine it with a drug like tolebrutinib, or sequence them. You give a potent anti inflammatory to get rid of the inflammatory component, and then, I have, you know, have a switch to this. So this is gonna have to be the future of, MS. Now that we have identified the unmet need as small ring disease and occurs even though people aren't having relapses and MRI activity, that will be the challenge. So that's the future, yes, sir. And then also, I mean, at least raise the point, and I think we shouldn't forget the point that, you know, what we call brain reserve or resilience, the ability to recover function, is important that people treat their brains gently. And then we know that poor brain health contributes to early or premature aging. So all those lifestyle factors also need to be put on the table as an as as a management strategy for swallowing MS. You know, I have this philosophy called marginal gains. It comes from the sports world where if you make little improvements, to every aspect of your performance, things overall improve by quite a quite a lot. I mean, Dave Brailsford, the, you know, the manager of team GB, the cycling team, he he did he used marginal gains to take team GB from almost in a in a people who could hardly win an event, who were almost taking all the gold medals in the Olympic games, and he used marginal gains as his guiding philosophy. And I think the same thing applies to MS. If you improve all the little things, exercise, diet, sleep, getting rid of drugs that are bad for your brain, you know, all this adds up. You know? This is why we need to, promote brain health as part of, a strategy for treating MS in addition to developing combination therapies. Jeremy, I would like to hear how how do you promote the brain health in your clinics? What we try to do is, help people to understand the value, have healthy lifestyle, and give exemplars of the important planks. So exercise, both physical and cognitive, diet and weight management, smoking, vitamin d, and trying to moderate alcohol intake of aspects of of aspects of lifestyle. Then there are issues around, sleep, well-being, and managing your own mental health. Now I think it's fair to say we we do not get into these aspects to the extent that we would like to, because we don't actually have the capacity to, to, to move beyond some aspects of basic care. So we try and signpost people to do information. Whereas I think it will be much better to run, to run things that are more direct for people than the passive concept of signposting. And I guess that's something where you, you have put a lot of emphasis and a lot of energy and effort into in your own work. Yes. I I followers and listeners at the moment, I'm very much aware that you are aware of the initiatives around the brain health and healthy lifestyle. So you just you just find that information, and and I just want to emphasize that, you know, one size does not fit all. You really want to explore. Sometimes you do your own research, and you try certain methods. And if it doesn't work, you go on to another one. But giving up too early is not reasonable, and as you can see from both professors, they also, highlights the the importance of living healthy to preserve the brain health, to improve the neuroplasticity, and give a capacity, and build the nice soil for the DMTs, disease modifying therapies to work. And it's it's so important now as you can see that identifying the smoldering MS is super important because there are drugs upcoming that we'll we will be prescribing for the smoldering MS. So so I think just to add to that all the complexity that if we could combine therapies together using anti inflammatory drugs, maybe, smoldering MS, drugs, but then some some of the DMTs cover both anyway. But I think we we also have to think about adding new some regenerative agents that probably is a combination of the therapy in the near future. The the feature is bright overall, and, we need more research, to to confirm this, and and then we will be, licensing these drugs and prescribing widely. But, you know, you as a person living with MS, you you are experiencing all that, and I think contributing to the research and providing your own experience and data, to smoldering MS clinical trials is is crucial. It's super important because that will allow us to understand what is smoldering MS and and how safely can we prescribe disease modifying therapies that are specific to smoldering elements of MS. Let's move on to another segment. We are very conscious of time. So, you know, people say, okay. You're talking about the smoldering MS and how to identify and what the drugs are available. Everything seems okay. I'm happy to be part of the research, whatever, but then I can't see my team. There is a problem getting access to my health care provider, you know, and I would like to spend a little bit time talking about the gaps in MS Care and addressing the the specialist shortage and timing that people are not getting seen. That's a big problem. Like even if they have smoldering MS, how can I identify if we can't see these people? So let's talk about the current status of MS Can workforce gaps. So, Jeremy, maybe over to you. What is required for us to improve that? Oh, I think we need to really consider a radical change in the way we deliver CAT. I people's experiences on the on the on this webinar and wider will have the variability in the experiences of their care, which will depend on a whole factor of things. But I think it's fair to say that across the country that, and across the UK that that MS care is way below the standards that, clinicians would like to be able to deliver and know would be of benefit to people. Now, how do you do that? Well, I think you have to think through the structure of care and, and how we deliver, given that we have, a relative shortage compared to the number of people we have a bit of specialists. And it takes a long time for specialists to come. So part of my belief is that we have, but we should have or could have regional hubs that, through which people are fast tracked for their diagnostics and their treatment planning. And then the treatment planning is, as it were, outsourced to their locality with clear guidance for management and monitoring. But they also have access to the, to the central hub for emergency problems as well. And I think that would help us with, with, a number of the, of the challenges we face. In some ways things are, work in a slightly curious manner in that and that you have to go through a series of hurdles to get to see the people who are likely to help you, specifically. And it's the same as pitching up in casualty where you start by you may see a a triage nurse, then you may see a very junior doctor, then you may see someone who's partway up the ladder, then you may see somebody else, then you may see somebody else, and finally a decision maker comes along. So we have to reverse the way that we deliver care, I think, and make and make specialist care accessible to people. But there's the whole thing is so challenging in the current climate. I think there will be a need to change. As we were talking before people joined, there's the way that that actually care is delivered. And maybe, Gavin, you wanna come in and talk about the possible need to move to dual mechanisms of of health care funding. Yeah. So I mean I mean, you know, anybody who reads the political pages of any newspaper or or political magazine would come to the conclusion that the current funding model for the NHS probably does need a overhaul because at the moment, it's unaffordable out of general taxation. You know, in most countries what's interesting is that, you know, the UK, the NHS is now costing as much as other health care system, and the results are not as good. So when you compare it to the Nordic countries, Germany, Australia, Canada, for example, you know, we're not doing as well as those countries anymore, and we're spending as much, if not more money than those countries. And I think one of the reasons is that there's too much pressure at the, at the touchpoint. So we actually and, you know, you could potentially use a different funding model to decompress. So, I mean, it's it's politically hot potato, talking about using the private sector or the 3rd sector to help decompress, but I think that's what's required. And then also within the NHS, we we find the bottleneck is, you know, we've created these MS centers of excellence, and they're the bottlenecks that people have to come through them to access services. And I will think we should create what I would call self management pathways where people can do what they can themselves. And if they can't get the answer right, they go off straight bypassing the MS Center for the specialist investigations and treatment, like going directly to continence people for bladder and bowels and facial dysfunction. Going, to the podiatrist for it, foot health. Going to the physiotherapist if they've got problems with balance, walking, falls, etcetera. So you create these and you and and as I was saying to you, you know, putting in self referral pathways, you need to get the whole NHS to agree to it, first of all. You know, if you just get the speech therapist saying, I'm not prepared to let a pay MS patient self refer, and I've gotta come through the MS team. Well, that just defeats the point of object. You know, somebody's having choking episodes and swallowing difficulties or speech difficulties. You know, why should they go through the neurologist, their GP, or the nurse when they can go straight to a physio a speech therapist, for example. So you're gonna have to reconfigure the whole NHS around that, and I think that will help decompress and get rid of the bottlenecks. It's just an idea of mine, but, but I I I don't think every person with MS, though, feels comfortable enough. And this is why you're gonna have to, you know, you're gonna have to have a training course. You're gonna have to take, tea and this happens in other disease areas. This is I mean, if you've got type 1 diabetes or even type 2 diabetes, you're expected to do a lot on your own, outside the NHS. I don't see why we can't, use that model for multiple sclerosis. Yeah. Excellent. I think, if you are a policymaker, if you are one of the directors at Edge Trust, and you're listening to this, I think, rethinking, reshaping, and providing different models of funding, different models of care is the the way forward. Let's move on to other questions, and we're sort of we're coming to the nearly conclusion, to be honest, and we have a few questions in the audience. Just whilst I'm picking up some questions from the audience, what's the future like, in in MS and anything that is coming next in MS research and treatment? Maybe, Jeremy, are you aware of any future innovative approaches? Just highlight one thing I came across recently, which was, which was some work done in the US, in the knowledge that, there is a hereditary component to MS. They are actively, investigating the blood relatives of people with MS. And they have a, and then they do this usually through MRI scanning and they've got this little portable MRI scanner or scanners around the place that, that they can, they can take 2 people so that they can, they can have, they can have scans in, in near them. They get enough sequences from these scanners to, to do a screening method for picking up people who are who have, asymptomatic disease and may go on to develop AMET. And, it was really it was really interesting and heartening to see that very proactive approach to to trying to identify people in the knowledge that A, there is a hereditary component and B, we're increasingly recognizing that, that MS has an asymptomatic phase during which a disease process will develop, but people will not have any manifestations. And that in the early stages, the manifestations are, are often atypical than the than those that might be expected classically. And so we, we need some ways of, of lowering our threshold for, identifying MS. If we're going to make that massive change to the to the natural history. So we so the first step of change is is the treatment of, without doubt, radically changed the natural history. But the but the next step is is that very early identification. And, of course, the third step, which Gavin may want to come into is, is prevention through through vaccines. Mhmm. Gavin, yes. So we would like to hear more about the vaccination, EBV vaccination that could potentially prevent people from developing MS. What's the future like on this? Well, yeah. I think it's really exciting because Epstein Barr virus, the virus that causes glandular fever or infectious mononucleosis, is necessary to develop MS. So people who don't have the virus don't get MS. So, you know, and that's the I mean, that's now been confirmed in quite a few studies. So the virus is absolutely necessary. So if you prevent people getting the virus, using a vaccine, you may prevent people getting MS. And there there are other autoimmune diseases as well. So that's gonna happen, and the vaccine has been developed by several companies, and the idea would be to start off, I think, in teenage children, vaccinate them to prevent infectious mononucleosis, because I'm is an unpleasant illness. And, you know, maybe that could prevent I mean, that's the theory, and we'll have to see what happens. And that's the development pathway for vaccines. But just treating, infectious monos. So infectious mononucleosis, which is a symptomatic, phase of EBV infection, that's when you get these terribly sore throat, large glands, and you feel terrible with lots of, you know, temperature and fatigue. And some people have to miss months or year or even years of school and university because I'm because it's so damn severe. You know, just treating the infection may actually reduce the risk of MS, which because something happens during I'm to the immune system that then primes it to develop MS in the future. So if you can treat the infection with an antiviral drug, for example, and get people over there, like an antibody for bacterial sore throats, an antiviral for EBV sore throats, You know, we may be also able to prevent the left. So those are the 2 pathways going forward for MS prevention. A vaccine to prevent getting infected in the first place, and then a treatment for I'm to help reduce the time people have got symptoms. There's an analogy to that. People may not know this because this is a disease that's disappeared. But right back in the 19 forties or even before, people used to get streptococcal, you know, sore throats. And if we didn't treat them, they used to get a condition called rheumatic fever. And once once antibiotics came available to treat, streptococcal sore throats, rheumatic fever disappeared. Or, you know, so, you know, the same thing may happen with with infectious monocytes. So those are the 2 exciting areas of research there. Wonderful. Thank you. So, questions from the audience. The one that I just picked up, is very reasonable. And what would be the minimum follow-up period for establishing a diagnosis of smoldering MS? Could that become practical enough to allow implementation in prospective trials? Thank you. Anybody that Also with Jeremy's work. Yeah. What would be the minimum time? Well, that's very difficult, isn't it? Because people have such variability in their in their symptoms. I guess that, you know, what what has happened for logistic reasons for clinical trials is people would talk about, 2 years free of acute activity and progression over that period of time. I mean, diagnoses of of progressive MS that, try and talk about somebody having progression over a year. But I'd I don't know how I'd answer that question about the minimum time. I'm sure it's much small much shorter, and it depends on stages in the in the disease. And it also depends on where you are in that because, there's there are 2 issues. There's rate of change and then there's also thresholds of change. So, it's a bit like, I guess your washing machine can get worse and worse and worse, and then suddenly it stops. And and the the little bit that it takes to stop is a tipping point. And it's the same, I think, with disease processes. They're not linear. They they are, they they they progressed in different ways because the manifestations have different impacts on people. So you have the difference between, what we call quantification and then the qualitative implications of that. I know that doesn't really answer the question. And so in clinical trials, the PURA, you you know, you gotta have most people use the 3 months confirmed. So you gotta you're talking about at least it's probably, at least, 6 to 9 months to to confirm those things. And I split on and, you know, when we goes when we because there's a question in the q and a by, saying, isn't it just progressive MS? Yes. It is. You know, spoldering MS is progressive disease. We just don't like to call it progressive disease because it means 2 different things to people when we talk about progressive disease. But, again, the criteria there are 12 months, essentially, over 12 months. You know? It's pretty difficult to make a diagnosis of, worsening MS in anything less than 6 months, and, ideally, you want it to be 12 to 24 months. Wonderful. Maybe the last question, if smoldering MS is the main driver of disability and start early prediagnosis, why is there still a distinction between types of MS that preclude people who still also have active MS from trials for progressive MS? This is a good question. That's a very insightful question. Jeremy and I, we I mean, we sit on the same side of the fence here. We want to get rid of the terms progressive MS because MS is MS, and then you have descriptors. You know? And what you know, the process is happening from the beginning, and the reason why you don't have overt, worsening is because you've got resilience. You know? You you cope with the with the, loss of axons or disability because you've got spare capacity within your nervous system. And then when you run out of reserve, then you get progressive disease. But that process is there from the beginning. So I think a much better way way of talking about it is you have AMS. And then on top of that, you have the descriptors. Is there any evidence of inflammation, relapses, and focal MRI activity, new lesions? Or do you have any evidence of, worsening, be it early or late in the disease? Makes no difference. It's the same process. I think we're gonna move there. I think the field will get there eventually. Yeah. Wait. It's one disease, isn't it? Yeah. One disease. Yeah. One single. Couple of questions on lifestyle. So maybe I'll take that. One is, is caffeine and alcohol that can worsen smoldering MS? Well, everything is with moderation. If you are exposing yourself with the energy drinks full of caffeine but full of sugar at the same time, so that's gonna cause obesity and overweight. So it's no no. If you are exposing yourself with alcohol daily, that's gonna be toxic to your liver and your brain health. So alcohol in general is toxic to your brain. So it can cause premature aging process. So avoid that, have the have some alcohol over the Christmas, but then have days no alcohol. That's the better way of managing your general health, your heart, your lungs, and your brain health. And, is the fasting a good management, of MS? Intermittent fasting is proven to be a wonderful approach, to it's actually anti inflammatory. So it there's a different aspects that works very well. So insulin resistance, it works via our hormones, and it's an effective way of losing weight and and having anti inflammatory effect on your body overall. It is it's it works in in MS. We have some emerging evidence. Beside that intermittent fasting, you have to think about what age you are. If you're a young woman, childbearing age, try not to exceed more than 14 hours of fasting because it can slightly change your menstrual cycle. So be mindful, explore, and maybe start with 12 hours only. And then, there are other diets being studied in multiple sclerosis, which is, ketogenic diets, one of them that shows some evidence that helps, in MS. We don't know how much of that is emotion, how much of that physical activity when you are exposing yourself with a good quality home cooked diet? You feel much, much better. Your symptoms are milder, and and overall quality of life improves. So so yes. So these kind of quick quick answers to your questions, and I think, we have to now, start wrapping up because it's 1 minute till till 6 o'clock. I I want to express my deepest gratitude to professor Gavin Giannoni and professor Jeremy Hobart for sharing their expertise, insights, and, of course, time. Time is super important. Your contribution, continue to inspire progress and innovation in MSKs is excellent and wonderful. We are all having now hope after this one hour. And to our audience, thank you for your thought provoking questions, engagement, participation, making your time this evening, and your voices help us identify what truly matters in in Multiple Sclerosis care as well as research. And if you have any further questions or feedback, please feel free to reach us out. We are on the on on LinkedIn on there's different media channels. We also send you invites, by Andrea. Andrea sends you emails so you can you can come back to her. This is just one single step in an ongoing conversation. We just started, and we look forward to more opportunities to collaborate, to share knowledge and information. Jeremy Hobart is gonna share his slides. Oh, he can't share. Maybe Andrea could share. So Jeremy, email to Andrea whilst I'm talking, the slides, and Andrea is gonna share who you know, how to how to get involved into the professor Jeremy Hobart's research project looking at the identifying what it's like living with smoldering MS. And on the behalf of the Southwest MS Research Delivery Network, thank you so much, as well as on behalf of NIHR, helping us to provide this, platform for people to come and learn in in real time. So everyone take care, and have a wonderful, wonderful, wonderful sparkling, magical Christmas and New Year, and we will see you next year then. Jeremy, over to you. I think Jeremy disappeared. Oh, he has. Andrea, do you have any contact details, or you're happy to share with I I don't, but I know he put it in the chat, but I will also when I send out the recording, I will also put, details in the email for that as well. Wonderful. Thank you so much. You're all gonna receive all the information about the potential clinical well, it's a it's a study. It's a research around the small ring MS, and identifying small ring MS. Thank you, everyone, and Okay. Goodbye for now. Thank you. Have a good Christmas, everybody. Bye bye. And there you have it. Be Well Wilderness Community, a rich and enlightening discussion with professor Gavin Giovannoni and professor Hobart. Their insights into smoldering MS, brain resilience, and the future of care remind us that process is possible, and so much is being done to transform MS management. I hope you found this webinar and the whole episode of People with MS on smoldering MS as inspiring as I did. I truly enjoyed listening to that and actually hosting the whole episode and sharing with you who didn't have a chance to attend the webinar on that particular evening and night. Remember that every step we take, whether it's through research, innovation, or lifestyle adjustments, brings us closer to better outcomes and brighter futures for those living with MS. If you would like to be part of the SOAR index project where we focus on smoldering MS, and it's led by professor Jeremy Hobart, All the details on how to contact the researchers are included in the show notes. Whether on Spotify or Spreaker or on my website, you will find the email how to contact the research team and be part of this exciting project. This is a fantastic opportunity to contribute to groundbreaking work that could shape the future of MS Care. If this episode resonate with you, please share it with someone who might benefit from hearing it. And if you have questions or you want to join the conversation, find me on LinkedIn, drop me a message on the Instagram or x Twitter, and I will respond to you. If you have any further more ideas for 2025 of be well with MS, podcast episodes, again, contact me and let me know. I will be there to support you, to talk through, and maybe we could deliver a nice new episode for be well with MS podcast. Until next time, stay hopeful, stay empowered, and as always, be well with MS. And by the way, don't forget to subscribe, www. Bwellwithmsoneword.com. See you there. Bye.
6 December, 2024 Guests Interviews and Charity events
In this episode of 'BeeWellwithMS,' host Dr. Agnes Straukiene discusses the importance of brain reserve in multiple sclerosis (MS) with special guest Prof. Stephen Krieger, a neurologist and professor at the Icahn School of Medicine at Mount Sinai. Topics include the innovative topographical model of MS, the concept of brain reserve, and how lifestyle choices like diet, exercise, and sleep can help protect and enhance brain health. Dr. Krieger also emphasises the importance of disease-modifying therapies, self-advocacy during medical consultations, and the ongoing advancements in MS care and research. The episode aims to empower listeners to take charge of their brain health and utilise practical strategies to manage MS effectively.
Hello, everyone, and welcome to another enlightening episode of Be Well With MS. Living above and below their threshold, brain reserve, and MS. I'm your host, doctor Agnes Trokiena, neurologist. And today, I'm absolutely thrilled to bring you a very special guest, a person who has been an inspiration, a role model, quite frankly, a bit of a celebrity in MS world. Let me set the stage. About 10 years ago, when I was just starting out as a research and clinical fellow working in MS with professor Jeremy Hovart, I came across the neurologist's brilliant educational work on Medscape. Medscape is one of the educational platforms. Klaus Krieger's clarity, wit, and passion for teaching left me in oh, fast forward a few years, and there I was sitting at the same table as him, a fellow scientific adviser, pinching myself because I couldn't believe I am here with him. And then this year as the AAN, one of the American neurology meetings in Denver, I finally met him face to face. Now let me officially introduce professor Krieger. He's a professor of neurology at the Icahn School of Medicine at Mount Sinai where he practices at the Corin Goldsmith Dickinson Center for MS. He completed his MD at Yale University after graduating from Columbia College and his neurology residency at Mount Sinai, followed by a fellowship in multiple sclerosis at the same institution. Professor Krieger has been a pivotal figure in the MS community, not only for his, clinical and research work, but also for his contribution to education. He's he's the creator of the innovative topographical model of MS, which has transformed how we conceptualize the MS disease. He also a mentor, winning educator, and fun fact, he's a model. He he recently walked the runaway at New York Fashion Week to support MS awareness and research. In today's episode, we are diving into the fascinating concept of brain reserve. How the structural and anatomical features of brain create resilience against neurodegenerative conditions like one of them, MS. We will explore how this reserve can delay the onset of symptoms, what it means to live above and below the threshold, and how lifestyle choices can help protect and enhance your brain health. Steven will also share practical tips for preserving brain reserve and often insights on the future of MS care and research. It's my honor and absolute pleasure to welcome the brilliant, the inspiring, and undeniably stylish doctor Steven Krieger to be well with MS podcast. Thank you for joining me today. I'm delighted to join you, but there's no way I'm gonna be able to live up to half of that introduction for your listening audience. So I think you need to set expectations much lower for them. But at least, at least with an audio podcast, no one will confuse me for an actual model. So that that part, I think, we can set aside. That was an absolutely terrifying little bit of fundraising and awareness raising for MS in New York, will probably never happen again. So I'm glad you mentioned it. That was a one time only, sort of modeling performance. Well done, Steven. I think, I I hope that next year, you're gonna be back walking down on the stage on the runway and maybe presenting a different costume, maybe day to day professor Krieger's costume and suit. Maybe. I think, I think I'm more likely to keep my day job as an MS neurologist. I think I'm probably better suited to it. But thank you so much for for having me and for and for having me to talk about reserve and resilience and the topographical model, which is that is my contribution. It's it's, it's every good idea I've ever had in one place. And and the whole idea of it is to help explain MS and to make it, clear for people living with it, and the people who love them and take care of them, and to try to foster an idea of empowerment with brain reserves. So I think it's kind of the perfect topic for for Be Well, and I'm I'm really glad to be here to talk to you about it. I'm honored to have you, and it's a great, great pleasure, Steven. So maybe let's dive into the the resilience. The way I sort of I was thinking about the topic and, and the title for this episode. I was thinking reserve is like, you know, it has got some sort of, I don't know. But I think that the literature and the research is focused and and this is the definition that is being used to tell about the capacity of the brain in a way. I like the word more capacity, but I think from the science perspective and research perspective, the resilience makes more sense. So, Steven, maybe if you could explain, what is the brain reserve, and what does it matter for people living with MS? Sure. I mean, I think in simplest terms, the idea of brain reserve is that any one spot in the brain is sort of doing a 1,000 things, and everything that we do is done and and created by a 1,000 different parts of the brain at once. So there was this old idea that one spot in the brain does one particular thing, and if you lose that spot, that ability, that skill is gone, and that the brain doesn't grow back and doesn't heal itself. And it turns out all of that is wrong, that really the brain behaves much more like a distributed network, and that gives it an incredible ability, of course, to do everything that the brain can do, but also to compensate for any damage that might happen to that network, that capacity to work around things so that it continues to accomplish what the brain sets out to do. I have a lot of different metaphors for this that I use, the topographical model being kind of the most thorough one, which I think we'll get to. But let me throw a couple of simpler ones in to to kinda get us started. When you think of a network, I think a cell phone network is a great metaphor for this. So a cell phone network allows all of our phones to work, and it's built on thousands and thousands of cell phone towers all around the world that keep that network going. And if one cell phone tower falls over, nobody loses phone service. It doesn't turn off all the phones in some particular area because that network just shifts to one of the thousands of other cell phone towers. That is to say, one could have lots of those cell phone towers fall over, and no one would realize it. No one would know because the network would compensate. And in neurologic conditions and in MS, any one lesion in any one spot is typically so well compensated. The system works around them that a person may never feel those lesions. They may never cause anything that the person would know about. That is to say, it wouldn't cause anything above some threshold of awareness, some threshold where the person feels a symptom or manifests some sort of neurologic sign. Most of the lesions in the brain that happen in MS go under that threshold. They would be imperceptible because of the brain's capacity for reserve its plasticity and its ability to heal itself. So that's that's my sort of first metaphor for it. Let me let me throw one more, and then we'll and we'll see what you what you think. Another one is similar, similar concept, but you can imagine the brain as this with this incredible flow of data and information happening in all sorts of directions, this huge flux of information. I always kind of imagine, like, the matrix screen with all the little digital stuff flying all in all directions. Well, imagine that in more literal terms, like a literal stream. Right? You're standing at the side of a stream, and that stream is flowing past you with all that water being the metaphor for all that information passing through the nervous system. And then somewhere upstream from you, there are some kids standing by the side of that river tossing little pebbles into that river. Those kids can toss all sorts of pebbles into that river, but you, half a mile downstream, you would never know because the water just flows around all those little obstructions, all those little pebbles in that stream. And downstream from that, you'd have no idea that that's happening under the surface. Now we still don't want the kids to fill the entire riverbed with stones. Right? Eventually, that could block the river, and then the water or the signals wouldn't get through. But part of the reserve, part of that capacity is the ability to flow around all those little pebbles, and I think that's why the brain is such a resilient thing that the signals that it's conducting can flow around all those little obstructions, all those little lesions. We care about them, but the brain has an incredible ability to compensate and keep that below the threshold. Amazing analogies that you've been describing here. I think, in a such a beautiful way, Steven, I really, really enjoyed that. I think it will resonate and with with many people who are listening to this episode. And I think if we bring that into more science, research indicates that individuals with higher brain reserve often measured through through metrics such as intracranial volume and exhibits slower progression of disability and cognitive decline compared to those with lower reserve. So, and I think it's, it's such an important message. How can we keep that volume of the brain? How can we utilize our cognitive processes to cope with the damage and and how important it is? I think one of these symptoms that, people with MS, reports is fatigue, and I think, and how how brain copes with that fatigue or any other MS symptom. And Just to add to that to the whole, analogy, I think I like analogy describing, as a brain reserve, as a sort of a brain saving account. The structural and anatomical wealth that provides a buffer against the the tough times like, you know, if there is a degenerative process and brain volume loss in patient with MS. So so just like savings account cushions the the during the financial hardships. So the the greater the reserve, the more neurons, the more synapses, and the more overall brain volume that can better absorb the impact of the challenges such as multiple sclerosis. I think you're right. I I, I I like the savings account example also, but what can I say? I guess I shy away from money based metaphors, and I go for all sorts of natural things like streams and networks. And when we get to the topographical model, it's a pool, which is, of course, ironic because I'm really not much of a swimmer. I've never owned a pool. I don't have a pool. But the idea, I think, hopefully, will will resonate. But you're absolutely right that, when we have thought about reserve in neurology and in neuroscience, typically, we have paired the word reserve with the idea of cognitive reserve. I think cognitive reserve is what we kind of intuitively recognize. And that is to say, we can do more cognitively, and we can do more with our highest brain functions than we are called upon to do on a day to day basis. We have cognitive reserve. We have abilities beyond the routine things that we do typically. What my colleague at Mount Sinai, Jim Simowski, who's a neuropsychologist, has really done with the reserve concept is to say what's true in cognition that the fact that we have this additional capacity to do more and to compensate is also true in other neurological domains. So he extended the concept of cognitive reserve into brain reserve more broadly, And I really give him a lot of credit for for this work. It's his work that originally found that the larger the brain volume, the greater the reserve there seems to be against later decline. That was true in the Alzheimer's world, where which he'd worked in earlier, and he brought that concept into multiple sclerosis. And and I think functionally, we can imagine reserve in other domains. So for instance, when we walk down the street, for instance, our walking is sort of somewhat automatic. Right? We start a little program going that says, you know, do the walking thing, and then walking occurs. We don't think about every step. But when we're challenged, for instance, walking on a on a balance beam or walking on the edge of a curb, right, or walking on a rainy day in high winds while carrying bags. All of a sudden, the task of walking is now being challenged a great deal more. And if one has physical reserve, balance reserve in that capacity, one can draw upon those things to still be able to accomplish it. It's true even for something like, dexterity. You know, on a on a given day, you know, we may be typing. We may be writing. We may be doing things that, you know, require a little bit of dexterity. But someone who can then sit down at the piano and, you know, play Rachmaninoff has such vastly more developed skills and reserve of dexterity and physical nuance that they could draw upon when called upon to do so. And so what Jim Simalski has done is create challenging tasks both for cognition and for balance, also for strength. We're not using our maximal strength most of the time during a day. And so one can think of brain reserve across all domains, and we need, as clinicians who take care of people with MS, we need to look harder. I'm sure we'll talk a little bit more about that, but we need to look harder to really understand someone's abilities, the extent of their reserve, and the way MS might challenge that. And brain volume is a good start. It's a good metric to look at it with imaging to say, how full is someone's brain, And how can we work with them to optimize the fullness of that brain, the fullness of their reserve over the lifespan to protect them against decline? Yeah. I'm listening to you, Stephen, and I'm thinking it applies to human beings, not just people affected with MS, you know. So we all should, pursue our lives doing activities that enhances our brain brain reserve or brain capacity, whether it's listening to the music, playing music, imaginary life can enhance that function of our brain or do doing some physical work or or doing exercise or we'll we'll come to that sort of a lifestyle approach, but I think it applies not just people with MS, but I think to any human being on this earth. And I'm just sort of, trying to understand and and look for some examples, how the brain reserve protects us. What are the visible effects in people with MS? So, you know, I think the most overt way is that reserve in the in the brain's hemispheres, right, the the major structures in the brain, is so good at allowing people to not notice when they have lesions, for instance, because they can do so much more. There's so much more plasticity, and by that, I mean ability to work around and find new pathways to get the the signals to where they need to go. But not all structures in the nervous system have the same amount of reserve. So the brain hemispheres are these big, vast networks. But let's say our motor abilities, we have to start by thinking of what we want to do. We create a motor path. That motor, instruction follows that path down through the brain through the brain stem and then out into the spinal cord where then it travels out into the limbs to create movement, to tell the muscles what to do. But in order to get there, that signal has to pass through the base of the brain into the spinal cord and then outwards to the limbs. So that spinal cord, that narrow structure, sort of the the width of the base of your thumb, is carrying all of that information to and from the brain. It is, in essence, a very narrow pathway. Or to use a kind of New York based metaphor since I am here in New York City, it's very high value real estate, that area, the spinal cord itself. And so the spinal cord has less reserve than the brain. It has less regions where you can call upon other structures. It has less ability to create new pathways and workarounds because it is this tiny little tube of wires carrying all that information to and from the brain to the body. So lesions in the brain may cause no symptoms because the brain compensates so beautifully. Lesions in the spinal cord, however, can cut some of those pathways. And then there's not a lot of workarounds. And so there's less reserve in the spinal cord, for instance. And lesions there are more likely to cause symptoms, weakness, numbness, walking problems, bladder problems, etcetera, because there's not as much reserve in that area because it is so small, so tight, and so compact. There's so little redundancy in a sense. So I think reserve is incredibly important in the nervous system for all people. It's important in MS, but the next step is realizing that not all parts of our nervous system have it to the same degree, and that's why certain areas that are vulnerable to MS lesions, like the spinal cord or the optic nerve, the nerve to the eye, are so much more likely to cause symptoms. Similarly, the optic nerve is just a wire. Really, there's not a lot of workarounds there too. Less reserve. So if there's a lesion in the optic nerve, that person was much more likely to experience vision loss. If there's a lesion in the spinal cord, they're much more likely to experience numbness or weakness, the things that we know about. And so this is gonna inform what the topographical model is about when we talk about that. Mhmm. And for instance, research has shown that cortical atrophy is predominantly observed in primary progressive MS. Whilst like a central more ventricular brain atrophy is more characterized in relapsed and remitting. So different types would have a different, anatomy changes which is also fascinating feature. But at the same time, we know that there is a proportion of people who have all these different lesions in the different territories including spine and they're not presenting with any symptom. So maybe it's time to look at your topographical model of MS and and and that has been a a game changer. It it was something that our first time I I read your article, I was like, oh my god. This is, this is this is game changing, but this is this is real. And and we never thought this way. We we've just been advised by FDA and pharmaceutical companies to phenotype MS, but we never gone above and below the topography and and lesion distribution. What does it what does that mean, in general? Maybe for our layperson, audience, you know, topography model of MS, what is it? And maybe then we'll talk, about above and below the threshold of the topographical model. Sure. Well, I'm I'm glad it moved you, and the and the ideas of it are really they are simple, and I think they are a way in to understanding how MS behaves. So the topographical model just takes everything we've been talking about and visualizes it. It makes it something that people could look at. So everything we've said so far, reserve is important, compensates for damage. There's a threshold above which we see the signs and symptoms of the disease, and below which there are lesions that may not have caused symptoms. And that there's more reserve and capacity for, resilience in the hemispheres of the brain, less as the brain narrows down into the brain stem and then ultimately into the spinal cord and the optic nerve, the simplest structures with the least additional pathways. And so I visualize this as the topographical model as a pool of reserve. So some people, this may ring a bell. They may have seen this leaky pool model, which is how it is often called. And imagining this pool of reserve with the deep end of that pool for the hemispheres of the brain and the shallow end of that pool for the spinal cord and the optic nerve, And the lesions that appear in multiple sclerosis are depicted in this leaky pool as topographical peaks, these white little mountains under the surface. So anyone who's ever seen a a topographical map, it's a map of sort of peaks and valleys, the highs and lows usually mapped this way to show regions with mountains and valleys. And in the topographical model of MS, it's a way of saying the location of lesions matters. Where a lesion is is so important in terms of whether it does cross the threshold and cause symptoms or not, and how much reserve is there protecting that person from that lesion. And so in neurology, as you know and any neurologist listening know, we talk a lot about localization, right, where a lesion localizes to based on the findings and the symptoms that it causes. And in this concept, the topographical model, topography is just location. It's location on that map of the central nervous system. And it's a way of saying that lesion location matters, reserve matters. And what makes MS unique, I think, one of the things, is that everyone's pattern is a little bit different. But how many lesions someone has and where they are, if they are principally in the spinal cord, for instance, and how much reserve someone has, how full is their tank or their pool, and how fast is that pool draining, how fast is that reserve going down as the years pass, I think that really determines to a great degree what someone's journey with MS is going to look like. Now you mentioned the phenotypes of MS, which is my boss and mentor's work, Fred Loveland. So these are the Loveland phenotypes, which we've had now for 30 years, characterizing MS as relapsing remitting, secondary progressive when someone's relapsing remitting disease starts to progress more gradually, or primary progressive MS, as you mentioned, where someone has progression of neurologic findings and symptoms, but never had relapses. My view is that those three things are really not distinct entities. So people have long asked, what kind of MS do I have? It's a very reasonable question. You Google multiple sclerosis or look at the Wikipedia page or look at the National MS Society, the European MS Agencies, educational platforms, they talk a lot about the phenotypes. They are important. But I think that what those don't capture are some of these nuances, some of these distinctions that make someone who has relapsing remitting MS have had a rough time, that someone else that we might call secondary progressive might not have had such a rough time. So we like to think of it as, you know, relapsing remitting MS mild, and progressive MS is more severe, but I think it's much more complicated than that. And in the language of the topographical model of MS, there is no real distinction between them. It's simply a question of how many lesions has someone had that crossed the threshold and caused relapses, and how full is their tank of reserve, and how fast is it draining? That is to say, how much, if any, progression has that person experienced? And our goals are 2 fold. Treat the disease to prevent new lesions, prevent those topographical peaks, keep the disease topography, as I call it, as flat as possible, and also boost reserve, keep the tank full, foster repair, and renewal so that that person can keep their disease below the threshold. And as you've said, keep living above it. Yeah. I have to just add, Steven, that at the biology level, the typing of MS, there's no difference between the primary progressive, secondary progressive, relapsed remitting. At the biology level, it's more more or less the same. And we also got this smoldering MS concept. Again, it's just a indicator of the progressive nature and diffuse changes that conventional, test and measures are not capturing, in in a given time. And I think the other aspect I would like to mention that, Leitman, one of the scientists, he uses the concept of above the threshold, which suggests that people with MS can tolerate certain degree of lesion load without manifesting to clinical symptoms as we just discussed and you explained nicely. I think it's just, you know, scientific evidence of that. And and looking at your own research, professor, Krieger, is that you mentioned in many of your articles that, how sub threshold disease activity can remain undetected in patients with, EDSS scores such as 0, for example. What do you think about, you know, when somebody comes into your clinic and they they they read assesses 0? How how do you really evaluate their capacity and brain reserve? Do do they have enough, function to compensate things? Or or and do we capture the the the reserve in our clinical setting? Some people may physically be well, but, they really fail at at their work with their working capacity. It's a it's a great question. And I think, you know, our our patients have been telling us for years that they know that they're worse, or they know that the MS is causing something for them. And we, neurologists, will do our basic exam and perform a basic MRI scan, and and we're reassured because we don't see anything new. But if a person is telling me that she's worse, in some way, she's worse. And the question is, are we good enough to pick it up? Are we good enough to see it? Are we looking in the right place? Are we looking in the right way? And how can we look a little bit harder? So the the EDSS 0 paper, I'm glad you brought that up. It's kind of a niche title. EDSS 0 is not normal. I mean, that's really kind of an not an in joke, but it's an in comment to neurologists and people who do MS research for whom the EDSS is our disability scale, and 0 is defined as normal. EDSS is defined as no findings. And what we did, again, with my colleague, Jim Simowski, and his cohort that he's assembled of people with early MS in whom he's studying reserve. This is called the radiums cohort, r a d I e m s. He's published a few things from it, including this paper on EDSS 0. What we did is to to use more challenging tasks. So instead of just the simple, what we call a mental status exam, which is essentially, you know, remember a couple of objects and know who the the leader of your country is and what day it is, we ask much more challenging cognitive questions and cognitive tests. So one could use even quick things like the SDMT, which is can be done rather briefly, and it's not a very involved test, but it's a good cognitive screening test. Then for instance, as I said earlier, reserve is not just limited to cognition. So for strength, instead of just, you know, what we do in the office, push my arm and squeeze my hand, we would test strength with a dynamometer to look at true grip strength, maximal power. Instead of for balance, asking someone to just walk a couple steps of tandem walk, heel toe walk down the hall, we asked people to do a heel toe walk on an elevated beam with their arms folded across their chest. It was challenging. No one was injured, but it was challenging. You get the idea. So a series of more challenging assessments. And what we found is that the people with an EDSS of 0, a normal neuro exam, still had findings. The MS had still caused things that were just under the threshold. But when we looked harder, we could see them. And these often go along with what our patients tell us. And so the mandate of that paper was not that we have to do EDSS's on everyone or that we must do these particular challenging tasks, but the mandate, the call to action, I think, for neurologists is to say, how can we look harder at our patients? How can we look more carefully? How can we challenge them a little bit? As you said, to to gauge how much reserve someone has or their true burden of disease under that threshold. And, you know, for a long time in our field, things like silent progression has been a topic, and, symptoms that are often called invisible symptoms are a topic. And what I've tried to say based on that work is progression is only silent if we're not looking very carefully. And s symptoms are only invisible if we're, you know, not looking. So I feel like we have to listen harder and look harder at people we take care of and believe them when they tell us that they're struggling. Absolutely. I couldn't agree more. And I think we also have to admit our conventional assessment or neurology assessment is very, very limited. In particular, when we're addressing EDSS, which is a common practice, it's a good communication tool between the neurologist to explain the clinical situation whether patient is disabled saying EDSS 6 or somebody's got milder form EDSS 4. But the accuracy of this measurement is really, really limited, and we need to go beyond EDSS and look for alternative measures to identify the underlying pathology. And and I think what is also important, the interplay between the above and below threshold dynamics just illustrates how individuals with varying level of the brain reserve can experience different clinical trajectories despite the similar level of the lesion burden. I think that that's probably a summary of our sort of, discussion here. But I would like to maybe quickly, touch the how how does the brain reserve interacts with the disease modifying therapies or other treatments that we have available? Do we have any new strategies to boost the brain reserve with these therapies? What what are your thoughts? And I'll be curious about your thoughts on this too. So I think, you know, our disease modifying therapies are very good at preventing new lesions, preventing relapses from occurring. In a sense, I think of our treatments, our disease modifying therapies, as doing most of their work on the base of the topographical model, preventing those lesions from rising up at all. And and as I I think I said earlier, trying to keep the disease topography as flat as possible. No areas of damage that could later reveal themselves above the threshold if reserve declines, if that tank of reserve does drain over the years decades. But I do think that there are data that our disease modifying therapies do preserve brain volume to a significant degree. And it makes sense. Even if these medicines don't penetrate into the brain and foster brain health themselves, they're keeping the immune system bad actors that are trying to cause MS lesions out. They're preventing all those hits and damage to that nervous system. And I think every lesion that's prevented, not only helps to prevent more disability later, but it also helps to preserve brain health and brain integrity. What our medicines don't do yet is actually, I think, boost reserve. I don't think we have medicines. I'll be curious to see if you agree or disagree with this, but I don't think our medicines yet have been shown that they actually boost reserve. So when I talk to the people I take care of, I try to frame it as we'll do one thing with the disease modifying therapies. We'll prevent lesions. We'll keep the disease topography as flat as possible. But then what can she do? What can he do to boost reserve, to be well, to have a healthy lifestyle? Because I think those things are actually really crucial for brain integrity, and it's not just lip service. Why does quitting smoking alter the trajectory of someone's MS disease? It is the single most useful thing someone could do, I think, to alter that disability likelihood over the years. And I think in part, it's because it it's a neurotoxin. So smoking is poisoning the brain slowly and quickly, and it causes vascular disease to the brain and other hits to that brain. So taking that out of the picture allows that brain to be healthier, to restore itself, to heal in ways that it wouldn't have otherwise. It helps to keep the tank full. And so, you know, I've told plenty of people over the years to quit smoking. It's hard. That's the whole point. It's designed to be really hard to quit smoking. But when framed in that way, this is the most impactful thing someone can potentially do to preserve brain health, to keep the tank of reserve full, my hope is that that's a more empowering message. And then we can talk about a whole array of other ones that I think are important to you in your work, that I think also we can put in terms of filling the tank. Yeah. Just to just to add, Steven, I think I I totally agree that, that there is a power of the disease modifying therapy, and particularly, you know, re diminishing the new lesion load within the brain. And if we look at the studies and and real world experience, people who present with a radiological isolated syndrome and clinical isolated syndrome, there is a risk of conversion. The large amount of the clinical events or radiological, let's say, events they had had on on their brain structures that that's a predictor, of worsening of MS, and it only reinforce the idea that exceeding the certain lesion threshold can lead to clinical progression. How to achieve that? It's a holistic approach. So I'm a great advocate for starting disease modifying therapies. And early, very early at the very beginning of the disease. And if you combine that with the lifestyle approach, I think it's it's no brainer. I think it's top notch, way of of managing multiple sclerosis or any chronic neurological disease if if you can combine the modification therapy with, lifestyle therapy. Because lifestyle is is disease modifying as well. I I was gonna say it's it's disease modifying, and it fosters, brain health in general. I mean, I think this is, for instance, where diet figures into, well-being in multiple sclerosis. I I I personally don't think that dietary modifications necessarily address the risk of new lesions, the risk of new relapses. We could disagree, but I don't think that's where it has its power. I think the disease modifying therapies have their power in preventing lesions and relapses. What diet does is it fosters brain health. So my colleague, doctor Alana Katzand, has done a lot of work with the Mediterranean style diet, the mind diet, towards fostering brain health, addressing, clinical symptoms. She and Jim Simowski, together with this cohort, have shown that, adherence to the Mediterranean diet can foster cortical thickness and cortical integrity. So earlier, you mentioned how cortical atrophy can be a marker of progression. Absolutely. The tank is draining, And using a a a heart healthy and brain healthy diet like the mind diet that Kat San has done so much work on, I think really supports that. And along with related things like managing body mass index and other sort of diet and vascular risk factors like, elevated cholesterol and elevated blood sugar, all of these through vascular mechanisms and others, can poison the brain. And in MS, we've got enough of an issue trying to keep the immune system from damaging the brain. All of these techniques fill the tank towards ensuring that the brain is not harmed in these other routes as well. Absolutely. I think we could, spend hours talking about the lifestyle, but I think it's worth addressing areas that, that have got the main, research evidence. And I think, emphasizing the importance of the exercises, you know, and how does that help to preserve the the brain and and and the capacity. So what's what's your thoughts, and what's the research behind to support that? What what Yeah. What do you think about exercises? You know, a physical therapist that I've worked with who has devoted his career to multiple sclerosis will point out that it is never too early in MS to start a physical therapy regimen. And it is never too late in MS to continue a physical therapy regimen. That is to say, throughout the lifespan and throughout someone's journey. What physical therapy, and I would add to that occupational therapy and for suitable folks, speech therapy, foster new pathways, work arounds, regeneration, what we term neuroplasticity. It allows people to navigate around the topographical peaks, if you wanna use that metaphor, fills the tank, allows you the the stream to get around the pebbles. If you wanna use that metaphor, it puts up more cell phone towers so that the signals can get through more strongly, if you wanna lean on that metaphor. But in all regards, what these approaches do is they optimize brain function, even if we can't see it on an MRI scan. I don't need to see it on an MRI scan. If I know that somebody is struggling with gait, for instance, because of MS related weakness, and often that might be weakness in the hip flexors, so trouble lifting the leg, weakness in the foot dorsi flexors, so trouble elevating the toes, that feeling of foot drop, that feeling of dragging a leg as though walking underwater or walking through mud, that feeling. Physical therapy can target those weak muscle groups, can can bring back strength and resilience to the exact muscle areas that are weak, that are causing the problem. It can be targeted and can allow that to get stronger by getting more of the signals to those regions, and and we see it all the time. And so I absolutely encourage that. There's lots of nice data, but not the sort of randomized clinical trial data that we have for disease modifying therapies, but that's okay. Some things we need that kind of data for, and and some things, honestly, we don't. And this is one that I'm happy to recommend to people based on the data and just the clinical experience that I think we have. Just some of the studies to list, one of the key studies by Samovsky and Leibitt, that while MS patients cannot increase their genetically determined maximal lifetime brain growth, they can preserve their existing brain reserve through the brain healthy lifestyle. That includes physical activity, healthy diets, and adherence to disease modifying therapy. Prescribing medicine is one thing, but adhering to the therapy, it's a entire different topic. So we have to encourage people. If you are prescribed Seasmody Buying Therapy, don't forget you are committed to to administrate or or to come and have your appointments and and have the medicine, as prescribed by your own neurologist. So going back to the lifestyle, the it's these kind of interventions aim to maintain cognitive function and the integrity in people with MS. And there are so many other studies suggest that active cognitive reserve influences the link between the regional brain atrophy and cognitive function increasing the neuroplasticity as professor Krieger mentioned today, systemic reviews highlighting the regular physical activity has anti inflammatory properties and can improve biomarkers associated with the cognitive function in MS. There is a an an element of the neuro tropic factor which is being stimulated whilst you exercise. It's a special protein that plays a crucial role in in in the health, survival, and the function of neurons, which is our cell of the brain, in the brain and nervous system. And and it think about that exercises is like a fertilizer for the brain helping neurons to grow, stay healthy, and form the strong reasonable connections within your brain. So it's super important. But also I would like to spend a bit of time talking about sleeping and the impact of good quality of sleep on on the cognitive function. For many, many studies, I I I I read, before, you know, lack of sleep and insomnia is is linked to dementia. And I'm pretty sure it it has got a negative impact on the brain reserve if people are not sleeping, so it's another focus. What do you think about the good quality of sleep, Steven? Yeah. I think it's a great point, and and we've talked in our field about MS fatigue, and and you mentioned it earlier as a manifestation of of the drained reserve. Because if you think of it, MS, in order for someone with MS to to do what they set out to do, their signals have to traverse a a windier path than someone who doesn't have lesions. Right? If they've had neuroplasticity and regrowth and and physical therapy and as such to get the signals where they're going, those signals nonetheless have to take new pathways in order to get there. And anytime a signal has to take a whole bunch of new pathways to get where it's going, it uses more energy to do that. And so I think it burns more gas, to put to use that metaphor, to to get there if there's roads closed and detours. So it it stands to reason that people with MS will burn through their energy more quickly than somebody without this disease. And so you're absolutely right. Sleep deprivation is brain toxic. Sleep deprivation has been shown to be a risk factor for dementia. In MS, where there's a risk for cognitive symptoms, where there's this extra use of energy and running out of energy, you could imagine that sleep deprivation is gonna be all the more harmful, all the more deleterious, because on a day to day basis, the brain needs sleep to restore itself, to consolidate memories, and to rebuild reserve. To be philosophical about it for a moment or to sort of take a step out of MS, I think when when I talk to people about sleep, sometimes they're sort of say, okay. Well, yeah. You know, I've always been a bad sleeper. Oh, well, I like to watch TV until 3 o'clock in the morning. And and I try to help people understand why it's important. So to to be philosophical, let's just think about it for a second. Human beings are the most incredible creature on this Earth. Let's face it. Right? We have incredible skills and abilities. Our naturally created brains have allowed us to create civilization, land people on the moon. Right? Do incredible things. And yet every day, every person becomes unconscious, totally helpless, and lays there for hours, helplessly, and then wakes up in the morning to conduct ourselves. If you had to design a creature, right, and you wanted it to survive, all the threats, all the harms, all the predators on this earth over the course of its evolution, you would definitely not design that creature to be completely unconscious and incapacitated and helpless for 8 hours a day. So sleep is so important that we created the family structure, society at large to protect people while they sleep from all of the potential risks and harms. We created society so that we could sleep peacefully and survive to have children and go on and propagate the species. So in essence, everything about our lives has been created to allow us to sleep because our brains need it so desperately that we're willing to take those sorts of risks of annihilation. So with that in mind, I encourage people to not watch TV until 3 o'clock in the morning because they really don't need to. But what their brains really do need is sleep in order to restore itself, stay healthy, and function effectively across the lifespan. I hope you don't mind my brief digression into all of human history here, but I do think it it's relevant. It's important. Absolutely. And, to the audience who is who are listening at the moment, think about how do you feel when you had a good night sleep, you know. How can you cope with the same task that you had the day before when you had a bad quality of sleep? So it's a the entire another episode talking about the sleep hygiene and and sleep quality and and and how to get into the deep sleep and have a good quality of sleep. But just to look at the research and and we we have loads of evidence saying that, the good good sleep, it's almost like orchestrating neuroplasticity, actually refining cortical plasticity, which is our higher cognitive function and thinking processes and executive function and restoring the the whole performance. So, you know, there's nothing more and and more beautiful in this life than healthy, good volume brain. And to end, I think, stress management is super important. A lot of people are not sleeping because they feel overwhelmed, stressed, and lack of sleep, poor quality of sleep has got increased risk of obesity. So people then have struggles with managing their weight, you know. So so it's a vicious cycle and it's quite catch 22. Smoking at nighttime, eating throughout the night, not stopping, you know, bad habit formation. It's enough to have 2 meals a day. We don't need to binge. We don't need to snack in between. And, certainly, we don't need to wake at 2 AM and have chocolate or something. That is exciting, and it gives you a lot of sugar, but that keeps you even further awake. So just being mindful about this, and and we're not gonna go too deep into smoking cessation. It has got super negative effect on the brain health. Brain volume increases the disability significantly, and there are so many, meta analysis and strong studies to suggest that. Any advice how to give up smoking, Steven? Well, you know, I I don't know if I don't know if I have the best advice on it. I think, you know, I think different things do work for different people, but I think the most important thing someone needs in order to quit something is the reason, the motivation, the rationale to to to do it. Because without that, I think all the techniques are not not so likely to help. So that's why I talk a little bit about smoking cessation as one of the most important things someone can do to keep their tank full, to keep their reserve up, that, along with the other things we've talked about. And thankfully, in a lot of places, smoking has sort of gone out of style. So epidemiologically speaking, it's it's an easier pitch, I think, to make now in many places than it used to be, but not everywhere. But but I'll tell you. I'll give you one example in that respect. I mean, I've told a lot of people to stop smoking over the years. But, a young woman came to see me in New York, from, Brazil, from Sao Paulo, some years ago. And, you know, maybe it's because she journeyed such a long way for the consultation and because so much, I think, was was riding on it for her at that moment, in her MS journey that, you know, I met with her. I met with her family. One of the things I said was, well, you know, you should really stop smoking. I said, I know that that's probably gonna be hard at that time in Sao Paulo. Smoking was still part of the culture, and then, you know, it had already changed in New York, but there, that was that was a difficult ask, you know? So she left, and, a couple of years later, she came back to see me, for a follow-up visit. And, and I I inquired about that. I said, well, have you have you given any more thought to stopping smoking? Very nonthreatening question, you know? There I always feel if I'm gonna be a doctor who's asking someone to give up something that they enjoy, you know, the last thing I wanna do is be a scold about it. So it was a gentle question. And she said, well, yes, I stopped smoking. I said, well well, when when did you do that? That's terrific. She said, well, the day you told me to. The day you told me to stop smoking, I never smoked again, she said. And she went back to Sao Paulo, and now she's telling all of her friends that they also should stop smoking. And she's, you know, a little one person, public health campaign there in Brazil. And what I realized about that is, you know, I think the reason she took it seriously coming from me is because she placed so much emphasis on what I had told her. She traveled a long way. It had meaning, And by my telling her that she felt that it was, it had a real mandate for her. It, it was valuable. It gave her a reason. And, and so I always feel like, well, if I could convince her, I could try to convince others. And so I tell that story here because maybe it'll resonate with some people that are listening. Maybe she's listening. She, she really she influenced me, in that way, because I think that that was a very powerful change for her wellness. Wonderful story. And I think in adversity, living with MS is already quite a challenging condition to deal day to day. And I think in that situation, you can become healthier you. And I heard some stories that, young people who are being diagnosed with MS in their twenties, they become super healthy, and they become healthier than their peers. Yeah. And they go to the parties, and they don't drink too much. They don't smoke. You know, they they just, you know, they run marathons, and they look after their bodies because they're they're they're in focus on on their brain health and brain reserves. Like, if you are 20 years old at the moment and you're gonna be in your seventies eighties, majority of people who don't have MS, they not necessarily look after their general health. And you may end up that in your seventies living with MS. You're much, much healthier than your peers because they by the this time moment, they will have diabetes, high blood pressure, dementia, obesity, you know, so all these comorbidities. But because you looked after yourself and looked after your brain reserve and and water tank, you know, so you, you know, you're gonna you're gonna be fit, you know, despite this, you know, condition that you have to live with. But, you know That also bring brings it back to the the savings account example that you gave earlier, the savings account metaphor for reserve. You know, who is it that's not really taking care of their savings account and putting their money away? 20 year olds who are not worrying about retirement, but that 20 year old who is told, invest early, put money away, plan for your future, plan for your retirement when you're young, that's the person that ends up wealthy. And in this respect, that's the person that ends up healthy with an actual, you know, healthy brain later in life because they've they've done the work to fill their tank over the course of their whole journey. There is nothing more precious in this life than healthy brain. Let's let's talk about the misconceptions. So, you know, a lot of people now listening. So, okay. Can I beat MS? Does it mean, like, now because I'm having a a brain reserve, perfect at this stage, can it help me to delay progression? Can you can you cure MS with by preserving the brain health? I think we wanna foster optimism and empowerment, but not complacency. Right? So none of these things that we're asking for people to do or think about doing are easy. And I think when people understandably want a cure for something or a fix for something, it's kind of like wanting us as medical people or as just people living our lives to be able to flip a switch. Flip a switch and the thing is done. And we don't have that yet. And and I view it as you said earlier, a holistic strategy, which is there are things that the person can do for their health and well-being and their brain health and reserve. But there's absolutely a place for the targeted immunotherapies that teach the immune system in very specific ways to stand down and not continue to cause relapses and lesions and cortical damage over time. I don't think we can accomplish that by boosting reserve alone. That's why in the topographical model metaphor, there's really the 2 things. We can use our targeted immune therapies to prevent these new peaks from forming and rising up, these new lesions, and we can do all the things we're talking about together to empower people to keep their tank full. But neither one is sufficient alone. I wouldn't have somebody on a disease modifying therapy and think that they don't need to do anything to preserve their reserve. And I wouldn't have anybody, you know, who wants to stay healthy and well with MS, doing all sorts of good things, diet and exercise and therapy to preserve their reserve, but then leave the lesions unattended, leave the risk for new relapses, you know, unchecked by not having them on a disease modifying therapy. I really do think these two things go in tandem, and I think we need to encourage, the people we take care of to have realistic expectations of both. This is not a solved problem yet. Yeah. I hope that in the course of our careers and it's the lives of especially of our younger and middle aged patients that this will become something much more akin to a solved problem. And I think there's real reason to be optimistic there about where our field is going. Yeah. But I don't think, I would want someone to be complacent about that now. No. No. Not at all. How can MS patients advocate for themselves during the consultations with with neurologists about brain reserve? What specific questions should they ask? Well, yeah, I think we've actually touched on a lot of the the strategies. You know? So sometimes I'm encouraging my patients to have physical therapy. Sometimes they're asking me to write them referrals for physical therapy, which I always smile and because that's great. I want someone to come and say, could I get some more physical or occupational therapy? That's that's great. I think that when I talk to people about disease modifying therapies, in essence, what we're talking about is treating their future selves. Right? Treating to prevent things from happening in the future. And sometimes that can take up all the time in a visit. We're talking about MRI scans. We're talking about treatments, risks of treatments, the monitoring of the treatments, all this stuff about future you. And the person now and how they're feeling now gets kind of marginalized. Right? Pushed to the last 2 minutes of the visit. What about my fatigue? What about my bladder? What about my energy levels? What about my walking? What about my cognition? All the things and many more that I didn't just mention. And I think it's important for people with MS to advocate for themselves in the room to make sure that their neurologist is not just looking at the MRI scans and protecting future them, but actually helping them now. What can we do for the person now? And that is symptom management and lifestyle modifications and wellness endeavors, etcetera, and and medicines as needed for some of these symptoms. But I I I care a lot about symptom management because I think it often gets overlooked. And I I think I would tell your listeners to advocate for themselves in that respect to make sure that the way MS is affecting them now is not being overlooked. Yeah. Totally. I think it's important that, education and, you know, what this what we're doing today is is educating people with MS, to think, reflect, and learn about about their brain function. I think that's super powerful. Once once people understand the processes, they they can enhance their self management strategies whether that involves changing lifestyle, whether it involves, you know, building resilience to the stresses, etcetera, etcetera. So I think I I feel like we are together as a team coming here to talk. It already it's it is a highlight for majority. And when they next time gonna go and see their neurologist, they they might bring this topic and say, what about my brain reset? What do you think? How can I enhance that? What are the other tools or interventions I could implement into my day to day living? And I think nothing is more engaging in this world, when we're dealing with a chronic condition such as MS is personalizing patient's journey. So what what suits to Mary's Tom suit doesn't necessarily suit you know, it it resonates to some other people who already may be running marathons, etcetera. So so I think, a lot of people these days when they come to my clinic, they say, yeah, I've got a bit of a cognitive problems, some word finding difficulties, putting the words in the sentences, formulating the sentences, forgetfulness, and it's been highlights by my family members. What should people understand about how brain reserve changes with aging process and its connection to MS progression? Because some people refer to me saying, oh, I I think it's probably aging, you know. It's not a great difference to my partner. But at the same time, science suggest that with MS, people have premature aging process, you know, and and where does does this brain reserve concept stands, you know, in in the aging population living with with MS? I think it's a great question, and it's a question that speaks to the success we've had in our field that people with MS are gonna live nice, long lives into late adulthood and their elderly years. And we're going to have to distinguish between, is it the MS, or is it getting older? Is it the MS, or is it mild cognitive impairment or even early Alzheimer disease, which is, of course, even more common in the world than multiple sclerosis? So as people with MS get older, they're likely to experience that too. There's a lot of work that's being done now on understanding the lifespan in multiple sclerosis and brain aging. So there's been work done looking at brain aging from an imaging perspective. Doctor Jennifer Graves, in California in the United States is doing work on, telomere length and biological aging to try to distinguish getting older from multiple sclerosis itself. But your question relates, I think, specifically to the neurocognitive domain, and that's really where a lot of the neuropsychology work is being done to tease out what is related to, aging and cognitive impairment and what may be related to multiple sclerosis. My colleague at at Mount Sinai, doctor Sarah Levy, she's a neuropsychologist who's interested in that question, and she's starting a study to try to distinguish mild cognitive impairment from MS related cognitive change, both with biomarkers and with nuances of neuropsych testing and the findings there. Because the findings of cognitive impairment from MS might seem like normal aging or mild cognitive impairment, but they actually take on a different pattern. So she's doing work to kind of tease that out, and what I would say to a patient is have some neuropsych testing done to try to parse that out because the implications for MS cognitive dysfunction and that of aging and mild cognitive impairment may be quite different. The strategies and coping mechanisms that a person will need to thrive may be different. The way their family members need to assist them and help them navigate their day and their tasks may be different depending on what's found there. So I I think having someone who's getting older with MS, with or without apparent such cognitive and behavioral challenges, should try to have some neuropsych testing to tease that out. Absolutely. That that's a formal way of assessing cognitive function. But just to add, to the whole bucket here that, cognitive function is is very complex, and people with MS, quite often are emotionally affected. So and anxiety, depression can affect the cognitive performance. People may be more forgetful, not focusing onto things, and that that affects their performance day to day. And, of course, lack of sleep, as simple as that, also can affect your but it's not necessarily driven by the underlying MS pathology if there are other multiple factors influencing your day to day living. So and to answer that question, yes, we need more research and then some formal assessment measures to identify what's aging, what's MS relate, what's the environmental impact on your day to day performance. Moving and and wrapping up, I think we need to finalize. We are discussing very, very important topics here, and we are covering most of the fields in MS, to be honest, during this one single episode. But maybe we have to think about, how can we finalize our our thoughts here, on this episode. Steven, what excites you most about the future of MS care and research, especially in the context of the brain reserve? Well, I you know, I think it's tempting to name particular, research endeavors, but I'm I'm not gonna do that. I'm gonna say the following. What's exciting to me is the overall pace of change in our field. And one can see that in the way we treat MS now compared with 10 years ago. One sees that in the way our diagnostic criteria are evolving to use new technology. Our biomarkers are evolving to give us more insight. The way our neuroimaging keeps getting better, and the way our therapies are going to keep getting better as well. So I wrap this up in the following way. And I I don't say this to everyone, but I I I've said this to some of my patients, which is when someone's being newly diagnosed now, what I'm excited about is that I can tell her that I'm gonna treat her with effective disease modifying therapies. We're going to get neuropsych assessments, a comprehensive assessments, and start her on a brain wellness path. And that my goal is for our field to progress much faster than her disease. That her disease is going to be, in essence, if I do everything right, frozen in time, circa now when she's getting diagnosed. She stays constant, but our field keeps getting better. And as we keep getting better and better and better, I want us to get further and further out in front of it for her. That's the image I want someone with MS to have now. They're understandably so worried what's going to happen to them. I want them to understand what's gonna happen to our field, which is we're gonna have things that we don't have now in 10 years and again in another 10. And we're gonna be able to do more for her in the future than we can even do right now. This is so beautiful. It feels like you would like to stay as part of this someone's journey throughout the life. And that's super calming, revealing a lot of of who you are as as a physician, and encouraging people to have neurologists living lives, providing care the best they can, and and stabilizing patient's condition and preserving the brain health. Today, we discuss a lot of things. We start with metaphors, allergies, philosophical observations, topographical models below and above the threshold to brain reserve. And we've gone into the lifestyle approach and then giving advice to people how can they support themselves and preserve their brain capacity and touching some, lifestyle such as sleeping, good quality of sleep, good diet, exercise program. Maybe playing the instruments, maybe playing the piano or guitar or, you know, being part of the band and and and all that increases the neuroplasticity, better networking, preserves the brain volume, and helps with the function. So, Steven, thank you so much for joining me today and sharing your invaluable insights into brain reserve and MS Care. You've given us not only a better understanding of the science, but also practical steps to empower ourselves and people who live with with MS. To our listeners, I hope today's episode has left you feeling inspired and equipped to take charge of your brain health. Don't forget to subscribe to Be Well With MS on your favorite podcast platform and share this episode with anyone who could benefit from learning about brain reserve. Don't forget to subscribe, www.bewellwithms.com. Until next time, stay curious, stay proactive, and remember, be well with NS. Take care. Thank you, Steven. That was good. That was fun. That was good.
11 November, 2024 Guests Interviews and Charity events
In this episode of BeeWellwithMS, Dr. Agne Straukiene interviews Amy Harbour, an experienced MS nurse from the UK who leads a team and manages 1k MS patients. Amy shares her daily responsibilities, including conducting clinics, home visits, triaging patient inquiries, and blood monitoring. She also highlights the importance of emotional support, patient education, and managing expectations, especially during MS flare-ups and progression. The discussion delves into challenges faced by MS nurses, the evolving role of MS nursing, and the critical need for adequate funding and support. Amy emphasises the significance of holistic care, patient education, and kind communication between healthcare providers and patients. The episode aims to bring awareness to the essential work of MS nurses and encourages a compassionate approach to patient care.
Hello and welcome to another episode of Be Well with MS where we explore the many facets of multiple sclerosis care and management. I'm your host, doctor Agnes Georgiana, neurologist, and today we're diving deep into the crucial role that MS nurses play in the lives of MS patients. Our special guest today is Amy Harbour, a highly experienced MS nurse specialist who has been dedicated to to supporting MS patients since her graduation from the University of Surrey in 2008. Amy currently manages an impressive caseload of around 850 patients, maybe more than by this time, and leads a team of 4 MS nurses and 2 admin staff including MS coordinator. She's also a prominent figure on the UK MSNA committee where she contributes to the CAM Manual Working Group and the development of nurse competencies. On top of that, Amy co chairs the annual nursing at the limit conference, which brings together the latest developments and best practices in MS Nursing. With over 13 years of experience, Amy has seen the MS world change rapidly and finds herself more passionate than ever about the role in steering these advancements. Today, we'll be talking about the clinical, emotional aspects of MS Nursing, the future of the profession, and the profound impact nurses like Amy have on patient care. So without further ado, let's welcome Amy Hubbard to this episode. Hi, Amy. Hi. Good afternoon. Thanks very much. That's a lovely introduction. I feel very spoiled with that. Thank you. Thank you. This is all about you and this is so real and so true. So, Amy, we can't wait to hear a little bit what it's like to be MS nurse. What's the what what is what does a typical day look like for you as an MS nurse? So it it varies day to day. So, I'm manager of the team of, like I said, the 4 nurses, and we cover Southeast Hampshire. So, typically, there's clinics during every day that we work, and these can be a range of telephone clinics or face to face clinics. So if we're doing a face to face clinic in the morning, we typically see between about 9 to 12 people, depending on their needs. It depends on how long our, appointments are. They can range from 30 minutes up to an hour. During these appointments, we we see our everyone with MS. So we see people who are newly diagnosed. We see people who have progressive MS. We have people who had just been, told that they can start a disease modifying therapy or been told that they need to discontinue a disease modifying therapy. And and the list goes on really all the different, stages of MS we see. So depending on people's needs, this is what we, use our appointment time for. After the appointments, after we've done the admin, added some new, appointment dates for the, patients, we then get to look at the emails, and we've got, something on our system called a Bragg system. So it is when people either email the service or telephone the service with questions, queries, they're put onto our spreadsheet or our hospital spreadsheet, and, we're able to rate them as to who needs to be contacted sooner. And so after clinic, we sit there and triage the list of patients, and then we either telephone return calls or email people back, put people in appointments, refer people on. And that's really the the the next bit, of the day. And afterwards, we then have, a section where we do a lot of blood monitoring. So those who are on disease modifying therapy or those who are in the community who haven't had their, vitamin d levels tested for a while, we then have a an absolute clinic of going through, bloods and any potential actions that's needed from there. But then the next day, it could be very different from the Monday, say. So the the Tuesday, we can have a whole day of doing home visits where we see people who are unable to get to clinic or struggling at home where we can go and assess them. So all days are completely different depending on the level of need of what people call up for, as well as all the paperwork and the management side of of things that go on behind closed doors, really, from the MS world. Wow. You you sound very, very well, it sounds like a busy work to do. Do you have time to have coffee at all? Like, having that schedule of of 1, 2, 3, 4, 5. This is sort of a a nice summary, but it involves how many steps to get to the outcomes for people with MS to live better lives, you know. It it really sounds busy schedule. And how many people are supporting you for for this type of the work? So the so the type of work we do so number see your question, not much time for for coffee. So it's always in the, like, bake it before you go into work in a in a hot kind of thermos flask and and sip it as you can during the day. Yeah. So supporting us. So like I said, it's it's me and 3 nurses that we that we have in the team, and then I have an MS coordinator who is the bread and butter of the team. She's absolutely fantastic, and she is the one who coordinates between so I'm primarily community based, and we have about 4 different hospitals that we work out of because we have a really large, like, geographical caseload. And she's the one who liaises with the different consultants and patients with regards to blood monitoring, and then she kind of infills our diaries for the the week and the month that goes on. So she is absolutely a godsend to our team. We also have a an admin staff who does all our audio typing. So once we've seen people either in clinics or we've spoken to people on the phone or via email, and we need the information to go to the GP consultants, or any kind of onward referral. He is the one who does that in in quite a nice timely fashion, but, obviously, we need to recheck once he's done the auto typing to make sure that everything is correct before we sign and and send it off. So as a service, I'm extremely lucky to have the support network that I do have, but it's still very, very busy for for all involved. Yeah. And imagine the services which are much smaller, and they have exactly the same task to do. Mhmm. You know, see the patient, then, you know, pre produce the letters after the patient's being seen, then validate the letters. Then there is a commitment to respond to inquiries. And it's not just 1 or 2. We're talking about by the time you finish clinic, so it's around, I don't know, 30, 40, 50? Exactly. Yeah. Exactly that. And I do know, like, a lot of, solo nurse practitioners actually who have very limited admin support, and they even have to write their own letters after clinic, book in all their own appointments, as well as keeping on on top of of seeing people in clinic, and then they do all the, home visits as well. So, whilst I am very lucky and it is still extremely busy, so for example, this week, we we have had some sickness and people are on annual leave and and getting married, which is lovely for them. But it's meant that this week, we've had to become a responsive service because I can't proactively go out, you know, do teaching sessions or have clinics because, actually, I need to monitor the urgent inquiries that are coming in because with MS, we we know that that's that is a priority that we need to catch any potential relapses, or for me as well, I do a lot of end of life care as well. So they're they're, like, my 2 priorities as well as keeping on top of the blood monitoring as well. And there are some pregnant women or or women just about to become pregnant, so you also have a commitment as part of the clinical role to look after women who and women's health. Right? Absolutely. Yeah. So that that's quite a big a big part of our role is women's health, and understanding that a lot of people who have MS is women who can, you know, tend to go through the menopause once they've been diagnosed as well. So it's it's going through that differentiation between the MS and the menopause. And we know that people who general people who don't have MS and if they've had any depression or anxiety in the past, when they go through menopause, they're 5 times slightly, you know, have another episode of depression or anxiety. So it is really important that we are there for those people to support them through through all of life, really. Yeah. Well, it's it's it's it's a holistic care, isn't it? And I think both for me as as neurologists, I think that, what is unique in the UK that we we really appreciate the role of MSN access. Without MSN access, as a consultant, as neurologists leading the services and running our own clinics, we wouldn't survive because of the various caveats and and implications and so many aspects to think about to cover the grounds. It's not about just seeing the patient. It's yes. It is important, of course, managing the symptoms and, and then monitoring patients, try to prevent them to come to the hospital with a non elective reasons, you know, which usually for people with MSA, urosepsis, fractures, falls, and and that involves working with other specialists and healthcare providers. How do you handle the coordination of care between various healthcare professionals, like neurologists, physiotherapists? Do you get enough support from other subspecialties and your own consultants? How does that feel being in AUS and then trying to establish these communications and working in in a network? Yeah. So so I've been, within the role now for, yeah, 10 10 years or coming up to 10 years. So I've been very lucky to work with people over time, and and I think be it in nursing or be it in any job, really, it's about building those support networks as time goes on so you can kind of rely on each other. We have, a monthly supervision with our local neurologist who we build up a really good, rapport with him. We have our weekly MDTs with the neurologists, the MS coordinator, the pharmacists, and other, nurses within the area also. That's a really, really good form of support. We we have been putting on some, training for physiotherapies and occupational therapists to, let them, you know, understand what MS is, what they need to be worried about when they need to contact us. But, actually, during these sessions as well, they they have, you know, they question us. And we've started up, another MDT, so to speak, with regards to the the patients that they're worried about. And we do, a lot of joint home visits, not so much clinics because people who can get to clinic tend to don't have many, or as as much needs as those who who require a home visit. So when we do, like, collaborative work in together, so the physio occupational therapist in us go out together, we all have our input in how we can actually help that that person and their family at home to to have life is is not as easy as possible. That's you know? But just to have things put in place to help to their day daily activities of living, to to be, you know, as best as it can, really. Yeah. So, yeah, I I think working over time is probably the biggest factor in that and just being open and receptive. And we do a lot of, teaching as well to, like, newly, to, not newly diagnosed nurses, newly qualified nurses. We do, like, education sessions for them so they understand what MS is because I think or I remember many, many years ago when I qualified as a nurse, I didn't have that specialist input. So it's really nice to to have that input from a service and to understand just just roughly what's an autoimmune condition is and how it affects the people, and especially symptom management out in the community. Wonderful. So it's I'm just listening to you, Amy, and and thinking, wow. This MS nurse is not just providing care to the patients, but also is responsible of educating peers and colleagues to function at the same level and provide the best care they can. But I think you can learn from the best as you you mentioned, there was a lack of education for you when you started, and now you want to overcome that gap and and inform other nurses who works in a similar field, in the same field, and and also trying them to establish them and be confident in providing the best care. Because as you as you all now listen to this episode, how many things that MSN has to handle and and maybe maybe be kind when you are just about to draft the complaint letter about the MS services that you feel that are not, responding or not caring. Just have a double thought about the approaches, you know, because this is the worst scenario. You know, you you have busy days day as Amy described. And then on the top of that, you get the the massive complain of saying that, you know, your team is not performing as they should or they they've been before the pandemic. I think, kindness and understanding and education may bridge the gap between the you and the health care provider. And I think, understanding the all aspects of the the clinician. So when you when we receive the complaints about us not performing, not doing, not responding or something that they are not happy, it's it's almost affects the entire day of of you as a clinician, you know? So you can't think about any other or even focus on your case, you know? Always think about the the words that we're told, the the the letter that you received, and you so I think if we could, as a community, bring that kindness and and understanding of the situation of and the nurse, role in your care. And hence, that's the reason why we're recording this this, episode because we want to bring that awareness and knowledge. As we are educating you as a as a patient, we're also educating the our peers, you know, and trying to align and, and bring them at the same level as, as we are providing the best care we can. So I, I know all the forums, all the bones, all the, all the unhappy thoughts that are being shared online on the media that you have trouble to contact this or another person or you're no longer part of the team. You don't feel like but I would like you to look from our perspective as a health care provider and and how challenging it is to handle and coordinate the various different aspects living with MS and and making your life better. Amy, I would like to know what role do you play in managing MS patients' symptoms, especially when they experience the flare ups and maybe they report disease progression? What what do you do in in these kind of scenarios? I I think that's actually quite a hard question to answer because there's so many different things that we do do depending on the person. So it's really nice that we we the the majority of our patients who we speak to, either 6 monthly, monthly, depending on on where they are, in their journey, we do get a good rapport with them. So we would know how or a lot of people we we know how they act. So some people don't call very often. And if they do call us with a problem, maybe we take that, you know, a little bit more seriously for that person because they had they they they're not one to say anything. So it's it's listening to the current symptom, current complaint, working out if there's anything that's you know, any stresses that's going on in their life, anything that's that's changed, anything that's particularly stressful they might be going through. You know, life happens as well as MS. They might be going through a divorce. They might be moving house. They might have had some bereavement in the family, And all these stressors do affect MS. So it's it's understanding the wider, look on life as well to see what's actually going on in this the person's life. So if we can address different problems on the way, then we will look to address that and we can signpost to to different organizations, different charities. And then we'll look further into their MS symptoms. If it's something that they previously had before, it would be looking back to see when did they last have this symptom, when, how was it treated, was it effectively treated, and did they have any residual, changes from when it happened originally? We will also be looking at, if it's a brand new symptom. So when did it start? Was there a lead up to it? Has it evolved over time? Is it like it just does it change as as the days go on or did it just suddenly appear there overnight? And by asking these questions, we can kind of work out whether it is the MS play, you know, maybe be inactive and perhaps a relapse or a new lesion, or could it be something else going on? You know, if they've suddenly woke up and they've had pins and needles everywhere, but then it's gone after 10 minutes, it'd be question it further, you know, how's your sleeping going at night? What's, your sleep hygiene like? So depending on on what happens then, it's dependent on the next steps. So, for example, say it was new symptoms and we had ruled out any kind of infection. So with new symptoms, we go in and ask people to do urine tests. We ask them to check their temperature, and just their vital signs just to see if there's any early possible changes that we can see of an infection. If if they're infection free, we will then, obviously, cross reference what medication they're taking, if they're on any disease modifying therapy when they started, whether that disease modifying therapy's had long enough to, or they've been taking it long enough to have an impact on their MS. And, depending on that, we would then, ask the neurologist or, you know, yeah, ask the neurologist narcissist whether they need, an MRI. Depending if it's a disabling new symptoms, we would then look to prescribe some steroids. But I am still very wary of steroids of that. They have they do, obviously, do come with strong side effects. So I think that people need to be counseled if they are gonna be starting steroids and their expectation on steroids as well. It doesn't make symptoms completely disappear, and it probably speeds up a relapse by maybe 1 or 2 days. So it's really getting people to understand, is is this new symptoms worth steroids, which could affect their mental health, which can affect their sleep, which can cause gastric bleeds, changes to bone structure. So I I think that's where we would go from there. If it was symptom management, say, more in the community, and people had more of a progressive MS, it would be doing again, eliminating any infections to see if there's any infections that's heightened their, say, spasticity or neuropathic pain. If if they're free of infections and we've done the infection screening, we would then look to see what kind of physiotherapy they've had been put in place, and how it's actually affecting their day to day living. And, once we know that, we can maybe look at obviously, do a medication review and either increase medication or add in, perhaps, antispasmodic medication like baclofen, or we could look at, neuropathic pain relief, for example, pregabalin gabapentin. But again, it is very difficult. It depends on the person. And a lot of these people, we we do then like to see. So if they're unable to come to clinic, it would be good to see them at home. And being in the community, we do have a good district nurses available, to help us if if they need to be seen sooner. Wonderful. It's it sounds like a very, very comprehensive, personalized approach to individual. And, Amy, you even didn't notice, but you listed a few, maybe 10 questions that you, you interview people when they present with their new problems and new symptoms. And I think what would be useful for our listeners, we try we will try to get these questions into the show notes, because you could perhaps get prepared for your MS nurse when you are experiencing problems and you need to contact teams. You could almost use that as a template for you to sort of summarize that and and save the nurses' time over the on the phone that, you know, you will be be asked the questions that Amy, just listed. And I think for you to prepare for that type of consultation would be amazing, I think, from both, you know, your yourself, and and the nurse who's going to listen and take the call. Or if even if you are writing in an email, you know, that could give you a template, a structure, what to put into the you know, and and and it's gonna help for the triaging the nurses when they come back and out of their clinic. If they triage their request, then they could have that information in front of them and make robust smart decisions towards your your care. So I think that's really, really crucial and important aspect, Amy, out of all this episode is is this this part, basically, which we will try to list to these questions after afterwards. Let's move into the patient relationship and and support. You know, looking after my patients and, you know, from your point of view as well, looking after so many patients, we sort of formed a relationship. You know, we wouldn't call this as a family member, but we've really become very close to people. You know, they share their life stories. They they share their life events. You You know, we we brought into the world babies, you know. So we we, you know, we we we've been part of their journey of getting married, getting divorced. And, you know, recently, I received a a letter. I was humbled and and honored at the same time and and really happy to hear that that one of the patients says, you know, you you provided care for so many years. I would like to donate my brain to your research. So, of course, I I signed posted to the, you know, biobank and stuff, you know, so but it's it's it's this kindness and appreciation is super important tonight. I guess, you know, we deserve deserve to to have that relationship with our patients. And I think it's life becomes easier for you as a as a person living with MS and and the health care providers, you know, nurse, Amy, myself. I just wanna know, you know, most nurses are often a lifeline for patients emotionally because that's where it's all starts. Our our connection is is how well do we connect at the emotional level. And how do you build that trust and maintain strong relationship with your patients, Amy? Can you share some stories and experiences? Yeah. Of course. I I do like you, I do become very emotionally invested in in in my patients' lives and their journeys. And so I I I do think that openness to begin with is is just key. But I do understand as well that some people aren't open, and they they they don't like share oversharing or sharing, much at all because they don't wanna be a burden on on the NHS service, or they don't wanna be a burden to us. But, actually, when you get to know them a bit more and you can you know, you you're giving you're allowing them you're given them the opportunity and saying to them, this is okay. You can tell me, and this is what you do need to call me. And sometimes people need to hear that that's fine and they're allowed to do it because I think there's so much stigma at the moment. It's like, well, don't call your GP surgery because you won't get through. Don't do this because, you know, the NHS is under pressure. But to allow, you know, almost giving people acceptance to call us, I think that's where it does start from. So letting people know they are not a burden to to the service. It might take us a little longer to get back to them, but we will get back to them. And their what they've come to with their, symptoms, their mental health changes, anything, we take very seriously. So I had a lady who I spoke to only yesterday, and she was, originally diagnosed with clinically isolated syndrome, a few months back. And she'd had a a scan done at the beginning of this month. And she'd gone to her doctor's surgery just yesterday and also 2 weeks previous because she started experiencing, palpitations. She'd come out. She she kept sweating, and then she she'd go really cold, and then she'd sweat really cold. Her palpitations were getting worse. She felt very anxious, very out of breath. So every time she was speaking to the doctor, she was getting herself into more of a of a worry. She was really just panicking herself. So her doctor actually messaged me saying, I think these are MS symptoms. I looked at them. They did they didn't seem like MS symptoms at all, but I gave, the lady a call, and and she was beside herself. She felt like she'd gone to the doctor. She was very dismissed. They couldn't they didn't know what was wrong with her symptoms. She said that she also had tingling down her left hand side, like, primarily in her arm, but also that her left leg was numb. But it's all these little things that she'd kinda kept to herself because what was bothering her at the time with the palpitations and how anxious she was feeling, she was extremely upset. So I did, you know, just let her offload, and she cried for a good 5 to 10 minutes. And then at the time that she was crying, I was looking through all her notes, and I could see that actually her recent m MRI showed that she had had some new activity, and she had some new lesions. And so on the phone, I, you know, I see I said to her, she she couldn't understand why a doctor or a GP couldn't understand her MS symptoms. And just because they they weren't visible to the doctor didn't mean she wasn't experiencing it. And I just agreed with her that that was all I needed to do and just to tell her that I understood exactly where exactly what visible symptoms were and how it does affect her day to day life. And she she felt relieved, and I could hear her calming down. And she said that her anxiety had been struggling because she was almost in this no man's land of having a diagnosis or not having a diagnosis. And then we spoke about her MRI, and I said, you know, things aren't all in your head. We can see changes on your MRI scan. And and she she started laughing, and she said, oh, I felt feel oddly relieved that I've got activity on my MRI because it it proves to me that I'm not going crazy was her words, which obviously she wasn't. So we could then talk about the MS in more in detail, and we could talk about disease modifying therapy. I booked to see her next week for an hour in clinic just because I think some people need a lot of support at the beginning, and that's absolutely fine. And we will support her as much as we can. And then over time, it's all about enabling people to manage their condition on their own and so that, you know, empowering people to know what MS symptoms are, what aren't MS symptoms, and actually when to to contact us, when to contact the GP. But I think it's all about that education at the beginning. And if you can inform people and educate people, that will automatically, make them trust you because, you know, that that's what that's what they've come to me for. They've not come to me for a friend. They they wanna come to me to somebody who understands their condition and who can help and guide them. So I think that that's really, really important. Yeah, totally. And I guess the reassurance, as you said, is super, super important, you know, because, because even talking, just talking through like this, what I hear from my patients, you know, they say, thank you, doctor. You know, thank you for just explaining to me. And that I I feel, you know, less in pain and, look, tingling disappeared sometimes. I get that response too. So, you know, so I think, patients need to know and they need to be told things that may be very obvious for everyone, but the the expressing that sort of in the format of their language and words really puts that emotion down, you know. They they become less reactive, more responding to the issues. And they're also I I always also trust people that they they know. They know what exactly is going on. And I think giving that sort of a reassurance that let's listen to your intuition. Let's listen to your gut feelings. You know, if you feel that this is MS and and this is, you know, a new flare up and you may potentially have new changes. Let's go and explore that. Let's let's investigate, you know, because sometimes, you know, if we don't see new changes, again, it it gives a bit of a reassurance to people that it's nothing significantly changing in their lives. And then the brain health and integrity of the brain structures is is may may not be impaired as as as anticipated or or may some people may may thought could be the case, you know. So so I think, communication, Amy, isn't it? Communication, contacting people back, reassuring, not leaving people in doubt, coming back even if it is a a week later, maybe some struggles within the services, maybe this and that, you know, but having that continuous communication and reassurance, that will bring array, of of the of the help, you know, from various different angles, I think, you know. And and once people settle down, eventually, they look. Their symptoms subside too. So I think it's it's super important to maintain that proper, adequate professional relationship with our patients, I think. And are there any strategies, to manage patients' expectations and and to cope with the unpredictability living with MS? Do you have anything to share? I I wouldn't say there was any kind of, you know, magic formula for it at all, but I would say it's it's literally doing everything that we've just discussed, really. It's communicating with them that everyone's an individual. We don't know what their disease trajectory is gonna be like potentially straight away. It depends on their if they're on disease modifying therapy, how how quick they started on the disease modifying therapy. But it's reassuring them along the way to contact us if if they have any changes so we can discuss it and see whether it's MS or if it isn't. The unpredictabilities of MS, I'd I'd like to talk to about that as well as it's more of a holistic, approach also. So as professionals, we can give medication to to help with relapses and to to reduce flare ups as much as we can in activity. However, we can only do so much. It is also down to to people with who have MS to do as much as they can on their own. So if we look at healthy eating, we can look at diet. We can look at exercise, smoking, alcohol intake, caffeine intake, and and just global life stress factors around them. So all those lifestyle changes that they can do, I really, really encourage them. So if we can do so much with prescribing you some medication and you can meet us as much as you can with the with the lifestyle changes, then we can try to to manage and keep on top of this condition as much as we can. You know, we we know it's a progressive condition. So at some point, things will get challenging and and and, you know, that's again why we're there for so we can talk to different you know, through different symptom managements, and that is why we do have, a greater team. Like I said earlier on, the physiotherapies, occupational therapists, we also have great, MS Society groups locally, in our team. Well, not on our team, but in our catchment as well. And and they're such a good support of, help. They do exercise meetings. They do evening meetings daytime, and they also do a lot of fundraising. So they have a counselor that they can refer people onto so they can have, up to 6 weeks counseling free, one to 1, which I know extremely lucky, but there are other societies that do do that with, you know, around England, which helps a lot as well. Yeah. Just to name it, MS Together, Shift MS, MS Society, MS Trust, all these MS charities that really are focused on to self management and and help for people who are living with MS. And it's worth exploring these websites, and particularly if you have new diagnosis and you're you're not, aware of the these certain situations. But at the same time, Amy, would you agree with me, living life, and expecting something horrible is gonna happen, this is very silly. This is really inappropriate. You know? By default, you are coding your your mind to for something, you know, that is probably 90% is not gonna happen anyway. You know? And you were you you're worrying about things that, you know, are necessary. So I think, we have to agree here, and I always educate my patients in my clinics and say, look, I know MS is unpredictable, but living life and and thinking that something horrible is gonna happen today, tomorrow, or the week after, it's it's not a clever, smart way of living with MS. Absolutely not. No. I completely agree. And it it is about that that mindset from from the off, isn't it? They say, you know, you you surround yourself with 5, positive people, you'll be the sick person. And it's the same with, like, every thought, everything that you do think does have an impact on your day to day life. So thinking that things are gonna be unpredictable, it will have an impact on your anxiety or, you know, your home life. So, you know, very much easier said than done. But, like, we do know that, you know, it you need to live your life as much as you can as best you can and do your hobbies and things that make you feel good. You know? Look for those feel good factors. But life doesn't stop because of a diagnosis of MS. It it continues, and so you continue to do as much activities or socializing as as much as possible, really. Yeah. Totally. And remember, MS is not who you are. Try not to identify yourself as I am MS. No. You are John, you are Mary, you're Thomas, you're you name it. How many names are listening now, our episode, but you're who you are. And you you just, you know, define yourself, first of all, not as being MS. You are the person living with MS, but it doesn't mean that you are MS. Okay? So that let's let's this form, that positive mindset and and healthy mindset because otherwise it becomes a nightmare for yourself and, and the healthcare providers providing care for you. So Amy, let's move on to challenges and evolving role, being MS. So I know you're a wonderful nurse. You're an exemplar. That's why I invited you for the interview. There are nurses who may struggle with day to day tasks, and I and I appreciate, because it's never easy. The the specialty on its own dealing with the young patients who are disabled, patients who are, people who are having super, huge impact on their lives with the symptoms that they are experiencing day to day. It's never never easy, Raul, and we we appreciate for everyone in MS world, MS Nurse in particular, who deals with it. And there are challenges involved, you know, and and what are some of the biggest challenges you face as an MS nurse, and how do you deal with the situations? Yeah. So there are many, really. So primarily as an MS nurse, I think the biggest challenge is is to keeping on top of all the the new and evolving research and the disease modifying therapies that that come to light with, criteria. That can be really challenging. So one is keeping up to date with what's coming out, what the blood monitoring system's like, who's eligible for it. And the back part of that is that a lot of people aren't eligible for these medications. And so it's having those conversations with people who who, you know, the press sometimes put it out that there's there's this new wonder drug that's come out for the MS community, but only people eligible, you know, for for whatever reasons. And that can be quite hard conversations having that with with with with somebody. So I think that's a really hard part of, MS. Us personally is location and geography as well. So, you know, I could drive an hour and a half to see somebody in their home, and then, again, it takes me an hour and a half to get back. So then having the time to see multiple people that day, you know, travel has a lot to to impact that as well. What do we do for that? Obviously, that's just smart management. You know, if if you have people who live up north of the the patch, then you have a day of where you're seeing just people up north, and so you can see as many people as you can. But, you know, that that's not necessarily something that's gonna help people who have MS listening to the podcast. I'm, you know, well aware of that. Another, challenge I think probably the biggest challenge that we have is the NHS in particular and especially people who are stakeholders. Neurology isn't on top of their, you know, priority. It's it's really low down. So you've got heart failure, the British Heart Foundation. You've got cancer. The these conditions where they're in the press so much and where they're talked about quite regularly, that's where the money's funded to. So you you will always see, you know, cardiac or or cancer, you know, funded quite a lot, whereas we're really, really, really low down, the chain. So that's really hard when you're trying to make, you know, business cases to your local stakeholders or the ICB, and you're trying to explain to them as to to why you need an extra nurse or an MS coordinator to help you with the load. It is not a priority for them. So that that can be really challenging. And I think probably another big challenge is the education out there with regards to infection and people who have MS, and it's nice if there was more education in, you know, primary care. So GP district nurses can kind of that would be the first thing they do when somebody phones up with new symptoms or increased tone spasms that that they could do a a urine, check straight away and, yeah, look for infection markers. So there is so many challenges out there. It's really hard to kind of pinpoint which ones is is the the most challenging because they all have a a massive impact, not just on us, but it also has a big impact on on patient care. If we were as funded as other conditions, we have rheumatology as well, that's another one that's heavily funded, then then, you know, we would have more nurses that could be a bit more, responsive to to people's needs also. I mean, more education sessions too. I think that's one thing that I'd love to do. You know, we we do do newly diagnosed days, which are great, but I I would like to do more of a holistic day where it looks at everything but DMTs, because I think DMTs are so looked upon and, you know, a lot of that's a lot of talk. And in the media, that is what you'd probably read about is all the disease modifying therapies, which are absolutely fantastic and are great. But there there's so much to be said about lifestyle, and that's, you know, a holistic day to focus on other things, not just DMTs would would be something that I'd I'd like to do as well, but having the staff in to do that. Yeah. Your words are like music to my ears, I hope to say. You are just spot on in in, you know, into the field of the holistic management, be well with MS, healthy lifestyle and impact and positive impact on on people's living with MS. I think there is a lot of work that needs to be done. Some services are evolving, but I think the general rule is that we haven't got extra funding to run that, in a in a way how we would love to. We do bits and pieces everywhere, in the world, but I think it's not good enough because as you pointed out, a lot of challenges, which is usually understaffed, underfunded services that relies heavily on monitoring the disease activity and prescribing activities, with with no extra help and some areas lack of education and lack lack of staffing. So if we had army of people and we were all on the same page and educate and have a good communication tools and skills, I think, the services would be enhanced big time significantly, I think. And, I would like to add at the personal level, the challenges that I think we both face the situations when the treatment options are limited and the patient experience rapid progression of MS. And we have very powerful drugs available, disease modifying therapies, but they're not necessarily quite effective and progressive MSN, we would like to emphasize that we are not ignorant. We are not gaslighting you guys. We understand your situation, and we know that you know better than we do, that you have a progression and you highlight that, we at this time moment, we documenting this. We're ticking the boxes on our databases. We we we are waiting, for the new drugs to cure in MS world that would tackle the progression of MS. All of the current existing medicine are limited, and we just want to tell you that we know you are in a difficult challenging situation with the progressive symptoms. We're trying our best to modify your disease trajectory with a lifestyle approach with by prescribing the high high cost effective drugs for switching off their activity and relapses. But I think there is a whole research, that is, on on its way, of getting the drugs license. We talk about the BTKI inhibitors and many more that will come in the future, but they're not quite there to be able that we would be able to prescribe and and and use that, in the clinical practice. So I think, moving forward, the future is bright, but I would like to know what do you think, the future holds for MS Nursing. For MS Nursing? Well, there's been a lot of work done with the MS Trust, and MS Nursing. So, the MS Trust hold a annual conference for MS Nurses, which is absolutely fantastic. It's a 3 day, conference, which they, bring all the latest up to date information, research as to what the safe number of nurses is ratio to to patients. And it's I think it's something like 315. So 315 patients to to 1 MS nurse. So I I think the future How many have you got, Amy? Or is there one nurse? Well, so, actually, I I've got whilst I got 4 nurses, we're all part time. So, actually, like, we have 2.4 nurses, and we have about a 1000 patients. So whilst I'm very well off, it's still not actually at the recommended standard at all. Okay. But then they have looked into obviously doing the MS champions. I don't know if if people have heard about that. So that's MS nurses that are out there in the community, and they're funded, also by the MS Trust for the first couple of years. And their primary role is to to be with those who have progressive MS. And I think that is where MS nursing is going. So way, way back when before disease modifying therapies came out, that was the role of the MS nurses was to go out to have clinics, to see people, to symptom manage. And then disease modifying therapies came out, and the the role of the MS nurse kinda shifted and changed. It kind of molded suit. So it actually took a complete different trajectory, and it's all of a sudden became about monitoring disease modifying therapies, monitoring bloods, monitoring side effects, monitoring whether to escalate, medication or to to deescalate or to come off medication. And so the the MS role completely went something that it wasn't, was for originally. And, so I think speaking to other nurses who had not long ago went to Xtrims with yourself, and it was really good to to meet other nurses there because they were saying that it needs to come back. It needs to kind of have a shift again because whilst we're focusing on disease modifying therapies, we still need to be focusing on symptom management. We need to be looking at people in their homes, and we need to be seeing what we can implement, you know, to help people with their daily activities of life. So I think, actually, it's it's gonna go it should hopefully be expanding. And I know that the NICE guidelines came out recently, and maybe they might be looking to do some change, and, hopefully, local ICBs can look into the the the funding of the nurses to say that, actually, it's almost like 2 different job roles at the moment, and more nurses are needed to to fill those 2 different job role rather than the one job role that we're doing at the moment. So at a more national level, it just needs to be MS needs to be heard. Neurology needs to be heard. It is such an important health condition out there, and I think it's so often overlooked because I don't think perhaps we're loud enough and we don't raise our voices as as as loud as they can be. But that's where I'd like to see the MS nursing going. Yeah. And just to add, on onto this, I think there is a a bright future of the digital technologies advancing the you know, our monitoring process, and I think I would like to see a lot of more automatization. And, as part of the monitoring process, I think we need to deploy the AI and computers Yeah. Helping to identify people who are most vulnerable, predicting their trajectories, highlighting and alerting the clinicians and physicians, people who are at highest risk score who shows the early signs of progression. So I think that's our future overall. It's a it's a team working in multiple sclerosis field. Would you agree with that, Yan? A 100%. Yeah. Absolutely. AI is common, isn't it? So we need to, like, use it to our to our full advantage. And I think, you know, just blood monitoring alone would save 100 of hours. Yes. Totally. Okay. To wrap up, any advice that you would give to newly diagnosed MS patient who are just starting their treatment journey? Anything that you could advise? So I think, the biggest advice I give people who are just, you know, have a new diagnosis is just to to take a breath and just to take it in. I think there's so much information that's trying to, you know, kinda load it at somebody when they're first diagnosed that that's not necessarily relevant. So I think it's it's listening and asking sorry, answering the questions that are asked of you. So I think that is always always priority to when I see a newly diagnosed person, I'm like, what would you like to know? What would you like to get out of this consultation? And, actually, I don't think there's one bit of information that I would say to every single person who is newly diagnosed. I would completely flip that on the head and answer what they want to know. And then as our, meetings and appointments grow, I would then start inputting, more information with regards to, you know, what is MS, how can it affect me, what am I looking out for. But I I just think that there is no point of me putting forward my opinions on somebody who's newly diagnosed and have a complete different set of, priorities to them. Yeah. And you don't want to overwhelm one single person who newly diagnosed with a lot of information. It needs to be a stepping approach, one step at a time Mhmm. Because that's better to absorb the new information for somebody who just been diagnosed with life changing diagnosis. Yeah. Yeah. Absolutely. Are there any misconceptions about the role of MSN that you would like to clear up? Any misconceptions? Not that anyone's told me to my face, but, I I do think that, you know, there there is frustration, and there's anxiety when people can't get hold of us. Yeah. We we try our absolute best to to get back to people as we can. You know, being understaffed to the majority of teams, that that can be extremely frustrating. I I do think it's quite important that the MS nurses have a range of methods to be able to get hold of. So whether it's telephone, because that can be really frustrating. People call up, we phone them back, then it's like a, you know, a a match of tennis. What can be good is an email. Sometimes having an email, setting a a a date and a time for both people to be contactable. I think that's that's always a really quite, good way to to communicate with your MS nurse. Otherwise, it you know, if if they phoned 3 times, then they don't phone back again. It it, you know, can be a bit a bit soul destroying. But other than that, I I don't really know what misconceptions there are out. What would you say? What what feedback do you get as a consultant neurologist? Like, what what what do they tell you about us? They can't contact their messes. That's the the common topic. I I listen at my clinic. So Yeah. So that that's a trouble, I think. And I I don't know how to overcome that, to be honest. But I think the this episode highlighted loads of issues and, highlighted also at the same time the workload that MSNACES are committed and responsible, for day to day. And there are so many other little things that we haven't covered during this episode because of the time. But, you know, simple as that, requesting the blood test, sending the blood forms, you know, requesting of our eye scan. So we we moved on to onto new digital assistant where we now started, requesting investigations on the on the digital platform. So that's a game changer. And there is still a forms forms that are paperwork and and physical forms that we and then there are some digital forms that we need to and it yeah. And this transition is is really challenging for everyone, you know, and and hence that that's a backlog coming back to people with the results. You know? And I'm sure that other services have similar, you know, issues. And and I think let's bring that kindness and understanding and let's communicate adequately. And I think, if you can't get hold of the MSN, there is a coordinator, there is an admin staff, there is a hospital switchboard at the end of the day, there is a GP behind the scenes that we will reach you and we will connect with you. Of course, it's disappointing that we know that you tried to contact and we, as a clinician and and neurologist, you tried to contact nurse or admin staff and you never gone through and you come to see me later and you highlight the these issues, it's heartbreaking for me to listen to these stories. I really feel sorry for people who couldn't get hold of us and they needed us, you know? So but I guess over the time, we will and once we automated the processes within the NHS and once we have adequate funding and support and large amount of the teams looking after people with MS, we will become much, much better over the time. So apologies in advance. To everyone, on behalf of the whole MS teams in the UK and globally, we're trying our hardest. There is nothing behind to that we keep or we don't want to. We're doing our jobs. We are paid to do our jobs, and we're doing that, as best as we can. But pressures are rising. New systems are being integrated. New tools are being given for us to work on. Cohorts of patients are rising by 8 to 10% every year. So you can imagine what what we have to go through. So be kind to us, and we will be kind to you, and try not to, overwhelm with your, approaches that sometimes I I I don't feel like it's fair deal when we get some of the, letters and emails and complaints. I think all it does, it just, destroys the your day. We are human beings. We are also holding emotions. And, really, we start worrying about the received messages that sometimes are not true and, and there is no it's just one one one side story, you know, and not compatible with sometimes your story. You know? So so really, let's be kind. I think that that's the key message to each other, and and we will reach the mountains of the good results, in in providing the best care we can. So to wrap up today's episode of Beboe with MS, I want to extend heartfelt thank you to Amy Harbert, a very special MS Nest. If you are a patient of Amy, you're the luckiest on this planet living with MS. And thank you, Amy, for sharing your incredible, insights and experiences as MS Specialist Nest and highlighting issues, challenges, as well as celebrating your achievements, providing good care. It's clear that nurses like Amy are the backbone of MS care. There is no doubt. And providing not only medical support, but also emotional and psychological guidance to people navigating the challenges of this condition. And as always, if you enjoyed today's episode, don't forget to subscribe. Be well with MS is www.bewellwithms.com and share, reach out, with any more questions or topics you would like us to explore in future episodes. Thank you for tuning in to Be Well with MS postcards and until next time, take care and be well. Thanks, Sadie, for coming. Thank you.
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Hi there! I’m Dr. Agne Straukiene, a neurologist, researcher, and MS specialist. As the host and founder of the #BeewellwithMS podcast, along with expert guests, I share knowledge to guide your MS journey. My commitment to MS care was recognised in 2022 with an International MS Brain Health Team award. I am a certified Brain Health Ambassador for the European Academy of Neurology (EAN).
I am co-creator of tools like the MS Infoflex database, MS Connect app, MS Patients Know Best, Augmented reality motor function assessment in MS (Strolll). I strive to simplify MS self-management.
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