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.
13 July, 2025 Guests Interviews and Charity events
In this episode of 'BeeWellWithMS,' Dr. Agne Straukiene sits down with Dr. Antonio Scalfari both MS Neurologists to explore the nuances of aggressive and highly active Multiple Sclerosis (MS). They discuss key diagnostic markers, biological factors, and effective treatment strategies for managing these severe forms of MS. Learn about the importance of early intervention, the role of B cells, neurofilament levels, and emerging treatments like hematopoietic stem cell transplantation. Packed with expert insights and practical advice, this episode aims to provide hope and knowledge for those navigating the complexities of MS.
Hello. This is Be Well with MS, the podcast that brings real talk, expert insights, and uplifting stories for people living with multiple sclerosis. Welcome back to Be Well with MS podcast. I'm your host, Dovagno Sorcayo, neurologist. Today on Be Well with MS, we are diving into very important and often misunderstood topic. What does it mean aggressive, highly active, highly evolving multiple sclerosis? To help to explore this, I've got a guest speaker, truly exceptional neurologist, doctor Antonio Scalfari, consultant neurologist, researcher, nationally and internationally recognized expert in multiple sclerosis, and and in particular in progressive MSN treatments strategies. Doctor Scalfrey is based at Imperial College of London. That is his main academic base where he works and helps to redefine how we understand the trajectory of MS from early relapses disease activity to long term MS progression. And the concept of smoldering MS, a form that causes subtle ongoing deterioration that often escapes the detection by using the routine conventional investigations, and we call this Real MS. His research has contributed to international guidelines and continues to shape the way we classify and treat multiple causes, active and fast moving forms of the disease. In addition to NHS and academic roles, doctor Scovrey also provides private neurological cat at Harley Street and Doctoral London clinics in the center of London. He's seeing wide range of the neurological conditions and has gained a lot of expertise. So in this episode, we will unpack the clinical and biological meaning behind the terms like highly active, aggressive, rapidly evolving MS, and explore how neurologists identify these patterns and discuss why early high effective treatment can make all the difference. Antonio, welcome to this Be Well with MS podcast for the second time, and it's a real honor to have you again. For the listeners, if you missed the first episode with Antonio, we have recorded years ago on our previous episodes, and we discussed the slowing and reversing MS brain aging process. So if you missed that, you need to go back and listen to this first episode. So welcome to this podcast, Antonio. Thank you, Agne. I'm very happy to be here for the second time. You're a very well known podcast. It's giving me this great visibility in the MS word, and I thank you for including me. So very happy to address the topic. The very interesting topic that you lay out, and you made a very good introduction. We're gonna talk about aggressive MS, how to define aggressive MS, how to distinguish this from highly active disease, and its relevance to the therapeutic management. And also in the context of the emerging concept of small during MS, as you mentioned. Absolutely. I think, Antonio, without any further delay, we need to dive into the questions that I have prepared for you, and everyone is listening us and would like to understand. Maybe to start with definition, what does that mean, highly active MS in clinical practice? Well, highly active MS to define an aggressive disease course predominantly based on the focal inflammatory parameters. So the occurrence of relapses and the new MRI activity. As we all know in the world of MS, relapses and new lesions detected on MRI results from the focal inflammation, which is one of the pathological hallmark of MS. And therefore, the occurrence of new focal inflammatory activity distinguish those patient to have highly active MS. There's another subgroup of patient which is slightly different from the highly active MS patients, which is called rapidly evolving severe MS patient, which are distinguished by equally aggressive disease course since the very beginning without trying any treatment first. So the main distinction between highly active MS and rapidly evolving severe MS is the occurrence of a lot of relapses and new MRI activity. In the first case, despite having a treatment, so failing to respond to treatment. In the second case, rapidly evolving severe MS. And this is actually occurring early in the disease course when, yeah, patient has not accessed any treatment. But basically they both refers to the same type of disease activity, which eventually leads to the rapid development of a severe disability. So it must be devastating for people, but in the world of MS in twenty first century, we have some medicine that could potentially help for people in this situation. Just to summarize, so somebody who presents with two or more relapses in one year, and, Antonio, correct me if I'm wrong, and having changes on the MRI scan, whether that shows enhancement of gadolinium, which is a contrast, or patients who develop a significant lesion load in a short period of time, people who had already treatments or who never had exposure of the disease modifying therapy. The ISA class is a highly active, rapidly evolving there's different names to describe the that indicates that people require an immediate interventions to help to preserve their brain health. Going back to the point you raised, a lot of study have shown that when the brain is exposed to the storm of inflammatory activity, it's very likely to set up a sort of cascade event that eventually might lead to down the line to develop severe disability. So as you mentioned, it's very important to recognize this very early in advance and address it therapeutically by tackling it aggressively. Yeah. So defining the subtype or form of MS allows us to implement strategies and quite soon. And I guess that's very helpful for us as clinicians to have some definitions like highly active MS because it helps to stratify and apply some different pathways that we would normally do for somebody who had maybe one relapse in ten years. So that highlights a lot of red flags on our health care systems that we need to do and manage these people differently. And also looking at their biology level, there are some biological markers that we can check these days, and it's emerging field, which is neurofilaments level, for example, in the cerumen CSF, which indicates an active disease. Would you like to delve a little bit on the biological markers? What do they mean, and what do we test these days, and why do we do this? Well, yeah, that's a very relevant point. Historically, MS histopathology has been focused on focal inflammatory activity, and that's why we tend to define, since the very early stage, the disease activity based on the occurrence of relapses in new MRI lesions. However, our understanding of the MS pathophysiology has dramatically expanded, emerging evidence on the role of other mechanism that goes beyond the forward inflammation. So we shed light with a lot of emerging new study on what is causing the disease progression in addition to the forward inflammatory activity, and that is reflected with the broadening of the definition of highly active MS or even we're gonna discuss later aggressive MS. And this broadening of the definition implies including other parameters, as you mentioned, so classically serum biomarker. One of the most commonly used that is receiving increasing focus and attention is the level of neurofilament. Neurofilament is a general biomarker that express damage in the neurons, in the nerve cells. And therefore, if we do see an increased level of those filaments in the serum in the blood of patients, that implies that it's an ongoing damage, and that can reflect a very active disease, aggressive disease. So in addition to people who also have a lot of relapses and new MRI activity, having a dramatic increase in the level of neurofilament in the blood can be an indicator of aggressive disease course that requires an early aggressive therapeutic approach. But I think also the definition of highly active MS is broadening by including also other MRI parameters Beyond the accumulation of the classic lesions, an emerging radiological marker that distinguish patient with a more aggressive discourse is the occurrence of remanaging lesions or otherwise called slowly expanding lesions, which are lesions in the brain that behaves differently from the standard lesions. Because in contrast to the standard lesion, once they occurred in the brain, they start, like, shrinking as a result of this inflammation that gradually subside. This subset of lesions actually have a tendency of expanding, so it's a completely opposite behavior. And expansion means continuous ongoing brain tissue destruction. And, hence, the clearly characterize those patient who are experiencing a more aggressive, more active disease course. Hence, it makes a total sense including this imaging biomarker in the new emerging definition of a highly active MS. Okay, Antonio. So it's a lot of information for people, and I just wanna digest some of the complex definitions that you used. So imagine that newer filament is the one of the biomarker that we in our clinics, MS clinics, and I like the MS nurse of mine who uses that analogy to say that neurofilament is like a broken wires and lines, and you got this kind of debris of copper around that broken area. So that's the neurofilament. So it's an active external destruction projects in other scientific language. And then Antonio mentioned about the the soil expanding lesions, which is a feature on MRI scan. Also, we have armamentic rim lesion, and the thickness of this around the rim that surrounds that inflammatory process also is classed as one of the radiological biomarkers indicating that there is an underlying slow progression. And I guess we are going into this another definition that we mentioned at the very beginning, which is aggressive MS. So shall we start with explaining what is the aggressive or malignant MS? What are the mechanisms behind and how do we define the aggressive? And what's the difference between the highly active versus aggressive MS? I think there's inevitably, there is an overlapping between highly active MS and aggressive MS that belongs to the same, let's say, umbrella of very rapidly evolving disease. I think the main distinction, the main difference between highly active and aggressive MS is that aggressive MS is defined by the rapid development of disability, irrespective of whether patient are also having a lot of focal inflammation, fluid inflammatory activity, which is mainly the distinguishing feature of highly active MS. It must be say that defining aggressive MS is quite challenging, and there hasn't been any consensus so far. There's been also an important committee meeting, which was led by Actrims a couple of years ago, and it was aimed specifically at when we have a consensus of defining aggressive MS. But, unfortunately, consensus wasn't reached. And I think the most commonly accepted definition of aggressive MS is when people do reach severe disability milestone within, short time, relatively short time. One of the most commonly used definition is when people become so disabled to require unilateral assistance for walking, which marks the attainment of six of the year's score scale within five years from the disease onset. Very aggressive behavior, which leads to the unusual fast attainment of severe disability. But, obviously, that can coincide at the same time also with a lot of relapses and a lot of new lesions on the MRI. Probably biologically, if we look more specifically, when we look at aggressive MS, aggressively results into developmental disability because of progression independent of relapsing activity, let's say. So as a result of progressive disease rather than as a result of relapses. And, in that is more typical of highly active MS. So I think that biologically that if we want to really distinguish the two entity, which nevertheless tend to overlap a lot each other, I think that's the main distinction. Yeah. So just to emphasize what doctor Scalper has just said, high reactive MS tends to be more defined by typically referred to relapsing forms of MS, but then aggressive is more so with early onset of the progression. So that's the key difference. There is also a difference at the biology level highlighted the MS and and aggressive MS. So it tends to be that with aggressive MS and malignant MS, there are some premature b cells. As you know, our immune system consists of various different immune cells. We know that there are main t cells and b cells. And imagine that the b cell is one of the sort of students at school that if the mature cell is functioning well, so they had all the proper education. And if the immature b cell didn't have a proper educational system, skipped the lessons, didn't attend school. So their education around the immune system and how to fight against the bacterias and viruses is disrupted. So, therefore, it inappropriately starts targeting our brain cells by causing more inflammatory process, and the progression quite often not reversible. So once the relapsing form changes to progressive MS, so it's really difficult to regain the function. And quite often, people with aggressive MS, they tend to undergo homo homoeboietic stem cell transplantations where highly active MS, they are getting highly active potent drugs to control the disease progression. And I guess there are some other biological markers to define the aggressiveness and very active MS and progressive, in particular, features are being captured by doing the GFAP, marker. Would you like to explain a little bit on on the GFAP? GFAP is the new kids on the block, basically. It's one of the newest biomarker that is currently being used to monitor the disease activity. It it's got potential to be more specific for MS compared to neurofilament level. And obviously, a sharp increase of the level of GFAP in the serum, as well as in the CSF in the spinal fluid tap can be associated with a more aggressive disease course. So, certainly, that that is one of the, marker that is receiving a lot of attention and focus as a potential indicator of more aggressive disease course. One that probably we didn't mention so far is the possibility of recovering from relapses, which poor recovery from relapses is certainly one of the distinguishing features that patient experiencing aggressive disease course. As we know, relapses, especially early in the disease course, despite being a very dramatic event for patients tend to then gradually improve. And especially early in the disease course, most of patients then recover completely and fully from an inflammatory attack. In contrast, when people are unfortunately experienced an aggressive disease course, one of the, distinguishing failure is the lack of complete recovery from the attack, which probably is mirrored biologically by somehow impaired remyelination efficacy, which doesn't allow the brain to repair the ongoing acute damage. For some reason, patients don't remyelinate as much as others. And that is why they experience such an aggressive disease course. And I think in this regard, it's extremely important to identify these red flags indicator of aggressive disease course for timely implementing the correct therapeutic management. Because after years of stability, one thing is, like, try to identify since the early stage of the disease whether patient is at risk of experiencing one of those aggressive form of MS. But, also, we need to be wary of the possibility that sometimes patient, despite a long period of stability, eventually go suddenly down the hill and, a very aggressive or highly active disease course may suddenly emerge, which has to lead changes in treatment in order to avoid any further deterioration and any, severe consequences such as accumulation of severe disability. I think we are in the new transition and moment that quite often in MS, we would fail to regenerate the cells. Today, it's been published on the Brain Journal, Plucino Lab outcomes that they have discovered that stem cell graft, which is injected into mice animal study at the moment, it regenerates the myelin and that a really huge hope for MS community that remyelinating process in the MS, particularly in the progressive MS, is revolutionizing the whole care that we provide to people with MS. And I think this is really great news. Have you seen that? I did read it. It's very promising, and it's I think it's a huge step towards then doing clinical trials in human beings. And this is one of the classic question that obviously patient are asking in clinic, understandably. The hope is not to try to stop any further progression, but actually to repair what has already been damaged. Yes. So hence the ex a very large focus on remyelination. And the new study from Cambridge seems to suggest that this is feasible at some point. So a lot of enthusiasm is certainly feasible in experimental model, in animal model. And, obviously, now the next step would be to translate this into human beings, and it would be very exciting. So I definitely agree. As I mentioned earlier, remyelination is one of the most important features that can protect from highly active or aggressive form of MS. And another important biological marker is also, as you mentioned earlier on, the role of b cells, which my view is is been the emerging key player over the past few years that led to the development of the most modern treatment approach aiming at depleting the b cells. And I must say at Imperial College where I work, there's been a lot of very nice studies quite a while ago showing that in line with what you said before about the role of b cells, those people who tend to experience more aggressive disease course, distinguishes topatologically by b lymphocytes aggregates in the meninges of the brain. That was an amazing study which was led by one of my colleague, Roberto Magliozzi, back when I was doing my PhD at Imperial and then has been confirmed by other labs. So apparently, this patient had a very aggressive form of MS. They managed to found out specific, aggregates, which called follicles of b cells in the meninges. And those who had these aggregates actually had a much more aggressive disease compared to those who did not have a aggravate it. And that further highlights the importance or the key role played by the b cells because this lymphoid feed for the aggregates are mainly formed by b cells itself. So as an important biomarker of aggressive disease course. Yeah. So the B cells, when they group up, like, in the army, like, when they go to fight, they like to stay together, and that's where the whole power comes from. And that's a form of more highly aggressive Yeah. Exactly. Because the underlying hypothesis that by grouping, as you say, that's by Cleaming out. Inside of brain, they're seeing a chronic inflammatory status that characterized it that leads to the continuous deterioration. So that's the the biological explanation of it. Yeah. And I just recently, just before our interview, I read a new article from University of Innsbruck. Actually, I spent a bit of a time down there years ago when I was just a neurology resident. So they just published on MSJ that there is another player as a biomarker, copper light chain, and this player is one of these new diagnostic markers in multiple sclerosis. It's been, well, advertised its exteriors, in 2024 as it could perhaps replace lupical bands. And as our MS service, we are looking at setting up the kappa like chain markers as part of the diagnostic pathway. And what the study of Innsbruck shows that if the kapalite chain marker is elevated more than 100, so there is a a likelihood that people will develop progress in a mess in ten years time excluding all the disease type of drugs that they wear before, age, duration of the MS disease, all that excluded. And they can predict that having raised copper light chain, marker indicates that people may tend to have more progressive forms of MS. What does that mean in a clinical setting? We would probably treat more aggressive people who's got increased marker. And to give a metaphor just on the spot to create in this one, imagine that the kappa is one of the string of the instrument, and there is a orchestra playing music. And if one instrument is out of tune, which so that takes the whole immune system, disarrange, and it becomes so active and targets the brain tissue by causing more inflammatory demyelinating processes with degeneration that people end up in having brain volume loss, progressive symptoms, progressive MS requiring walking aids, etcetera. Now, Antonio, let's move into a more beautiful metaphors to explain complex medical definitions to layperson audience, and that's the majority of our Be Well with MS. Our people with MS or carers listening to this podcast. Could you use a metaphor to explain what's happening in the brain during highly active MS? What is the guy what's underneath the whole scenery? Well, it's a nice question. I like to think the brain as a sort of vast forest with countless trees. And we may think about trees like representing each one some nerve cells. So the forest gives you this feeling of calmness, healing, like a nice safe place, right? Self sustaining all at once. So causing this, very fluid burning of those three, which represent the neuronal cells, I would say, start spreading throughout the forest, causing then eventually a lot of damage, leaves, scars, and weakening the whole forest, therefore, the whole brain tissue increasing then the risk of collapsing and causing permanent deficit. That's, I think, it's a metaphor that probably explain the way I see highly active MS. This is So important. It's important to tackle that those fires before they're spreading too widely and tackle them aggressively, which is the reason why we want always to implement a very aggressive therapeutic management, especially among those people presenting with rather aggressive disease features. This is so beautiful. Thank you for sharing this with. I think that resonates with many people and people when they are making decisions towards the disease modifying therapy, whether to start at all or not or which medicine to go, I think that visualizing that forest and doctor Scoffery that just described that whole scene of the activity will shape the informed decisions. Now let's move on to can someone appear very stable with EDSS zero? Nothing is wrong with them but still have aggressive disease under the surface? I think yeah. Be because that's the way it's all depend on you how you define aggressive MS. If we use the traditionally used assessment tools, if we look at simply at the occurrence of new lesions on the MRI, whether or not they're having relapses or whether they are stable on the EDS scale, those are parameters, tools that are commonly used to monitor the disease, but do not necessarily catch the all wide spectrum of symptoms related to MS or biological activity related to MS. So it's not uncommon to see people who are seem stable according to those specific parameter, but yet under the surface, they're still having very active disease. And, and that reflect our clinical practice. I think with the widespread use of very powerful disease modifying treatment, which in most of cases succeed in suppressing relapses, suppressing any new MRI activity, making these people these patients relatively stable with no advancement, no progression on the EDS score. And despite we reassure this patient that everything looks stable according to those parameter, yet they come to us and say, I'm not feeling well. I'm feeling worse. And the problem is that defining worse because worse is probably driven by an underlying biological activity, which is not traditionally detected with our tools that we implement in clinical practice. And so when we dig further and we look more carefully among those patients, we might end up finding increase, for instance, serofilament level or more a larger proportion of slowly expanding lesions that reflect an underlying ongoing biological activity, which can account for the continuous progression, continuous aggressive disease course despite the fact that from the focal inflammatory parameters, the disease seems to be completely stable. So to answer your question, yes. Among those people who seems to be stable, this can still be a lot of activity that reflects an aggressive disease course. I think that's mirror the classic, emerging view of MS if you want to do a metaphor as the iceberg. What we see on the surface is just the tip of a huge iceberg underneath the water surface. Right? The tip of a iceberg reflects what is more easily detectable in MS, which are the relapses and the focal inflammatory focal new lesions in MRI. But underneath the surface, there's certainly an ongoing smoldering activity that somehow other people have defined as a silent progression, which accounts for a gradual decline of the patient's both physical and coronary function, irrespective of what we see on the top of the surface or on the tip of the iceberg. So I think that's a good metaphor to describe this sort of dichotomy, contrastive dichotomy. And that's to also to reassure patient that they're not making this up, that they are actually getting worse. We understand that it's true. There is a biological explanation for that despite according to the standard parameters, we don't see any disease activity. Your voice matters. What you're saying about the progressive MS, we do truly believe if anybody works in multiple sclerosis, we all on the same page. We all understand the underlying pathologies of clinical worsening, not necessarily visible on MRI scan, but there is underneath the waters. Antonio described a lot of activity that not necessarily we see that on conventional MRI scan. And a lot of people now listening to this episode and saying, Agnes, stop it. How much more information you're gonna give? What's wrong with me? Like, let's give people some hope and talk a little bit about the treatment and moving us forward onto high efficacy treatment options. When do you consider choosing the high efficacy drugs in people with MS? Yeah. That's a very relevant question to all our patients, and I agree. I don't want to give a complete negative outcome here. There's a lot to hope. We learn how to address this proactively and how to make a difference, and that implies the use of highly active treatment. I think my treatment philosophy is to treat aggressively in most of cases, regardless whether patients are presenting with aggressive disease course. But, of course, especially among those exhibiting more florid inflammatory activity and the biological rationale, as I mentioned early in our discussion, is that it has been proven that if you let those fires still breaking in the forest, this trigger a cascade of event that eventually will lead to the total collapse of the forest and the brain later in the disease course. So it makes totally sense aggressively tackling early those mechanisms in order to avoid rapid degeneration that can occur also years later. So the implementation of an aggressive therapeutic management implies they use highly reactive treatment. And thankfully, our therapeutic landscape has dramatically expanded, so we can use now very powerful and at the same time, very safe drugs after all. And that's reflected by the increasingly large use of highly active treatment among most of patients. At least in my practice, we tend to use highly active treatment to most of cases because they are safe nowadays. So the it makes sense playing your best card since the very beginning. But also among those who are not being given actually highly accurate treatment, we always have to be wary about the possibility of the disease rapidly declining at some point. As we mentioned earlier, being able to detect all those red flags that might implies the disease is changing in its behavior and therefore changing also accordingly a therapeutic approach by escalating into a stronger compound into highly active treatment. And by doing so, I must say, we always seem to prevent any cascade of events that can have a very disastrous consequence down the line by determining an irreversible damage. Actually, and I think it was sprinkled just with the water gently, so that's a mild treatment. For some cases, it's still suitable, and, it's okay. But if the biological markers and radiological markers are not showing the risk of progression and and aggressiveness of the disease, it's fine. But for the aggressive highly active MS, you want to combat the fire aggressively. And because it's just a smolder out of sight creeping under the ground and actually destroying the roots of the forest. It's very important to tackle that in a timely manner to present the brain volume, the brain health, the cell function, and don't forget lifestyle. So besides the all the highly active treatments that we have, you are creating the soil to seed a plant if only you practice healthy living, healthy lifestyle. So if you are still continuing smoking and listening to this Be Well with MS, By definition, the title, you can't smoke and listen be well with MS at the same time. Some people do. I appreciate, but really seriously consider this is the only one thing that you could do to preserve the brain health. Starts now. Now I would like to learn from your day to day living and being a practicing neurologist. So when we use the terms to describe what's going on at the bedside or in our outpatient clinics, how do you approach people to avoid any fear and urgency that something is wrong with them? What's your description? So maybe this is a message to the nurses and other health care providers who are going to learn from you. So how do you approach people to describe that this is serious? We really need to do something more actively and urgently. This terminology can be very scary, and, I agree that often patients come to me, do I have aggressive MS? Do I have highly active MS? And SPMS sometimes, they start cutting into other definition that is related in their mind in people's mind to poor outcome. Personally, I don't like applying labels. It's something that I don't use in clinical practice because of the potential emotional impact that turn this type of terminology can have on a patient whose psychology is already strained by the burden of living with MS and so on. To be honest, I tend always to reassure patients that I tend to prefer to use, like, the terms of red flags. Red flags is a bit more reassuring in my view. So something that might flag it up, but we still don't time to catch it on time and, being proactive about it. So when I see red flags that might imply on a highly active, disease course or an aggressive disease course, I discuss it with the patient. I explain a biological rationale that support the use of tackling this aggressively with highly active treatment. I try to make myself clear and reassured that in most of cases, by doing so, we succeed in suppressing that activity that can potentially lead to severe consequences. Beautiful. I think imagine your nervous system like a road network, busy with cars, people, animals, and this can cause cracks beneath the surface on the and you may not notice initially, but your markers and MRI scan shows that to them. So trust your health care provider who advise you that perhaps taking a bit more aggressive approach and highly active treatment is your way forward because it really reinforces that keeping the traffic under control and flowing smoothly without having any cracks to continue your journey living with a long term condition such as MS. And I must say another analogy that you made me thinking. Sometimes people come to me and they exhibit some marker of aggressive disease course despite not being clinically stable. So they are stable, but the MRI keeps accumulating lesions. There's increased serum level of, neurofilament. And the way I tend to convince them that something has to be done about it, I say, imagine your brain like a very solid wall. And, in this wall is constantly punched and you might feel it's super solid. You're not having any new symptoms. But the continuous punch of this wall eventually will lead to cracks to appear no matter what. So if you don't stop the punching, regardless whether it's causing symptoms or not, eventually, the wall will collapse. There's no doubt about it. And most of people tend to get this message and understand it, so they like this type of analogy. This analogy speaks to hidden damage and early interventions and long term stability and good quality of life. Before we wrap up, I just wanna ask you, could you share a clinical case that taught you something valuable about managing highly active MS? It's always in my mind the case of one of my patients, a lady who was very worried about MS because, unfortunately, she was hit quite hard. She had accumulated quite substantial amount of disability in a relatively short time. She was requiring walking assistance because of weakness on one side. We tried few treatment. We never succeed in stopping the MS from progressing. So one of those very aggressive form of MS. And, I think we managed to catch it on time before it was too late. We gave her a metabolic stem cell transplantation, which, we didn't hesitate too much. And I think, that the lesson I learned, do not hesitate until it's too late. And as a result of the transplant, she was very brave because we're looking at the time when the transplant was not I'm not saying now it's commonly used, but it's more widespread used than before. At the beginning, it was really an experimental approach some years ago, and she was very brave during this treatment. And, eventually, as a result of this, she experienced a remarkable improvement after the transplant. By the time I saw her again after the procedure, she was able to walk independently, and that really struck me. I left her that she was needing to rely on a cane for walking, and now she was walking without any aid. And she was smiling, and, she thanked me so much. And to me, it was a big learning point how important it is to address appropriately any disease activity, any red flag activity that might predispose into a very negative outcome. But if it's taken into timely manner, can really be addressed efficiently, and and the worst outcome can be very effectively avoided. Such an inspiring story. Thank you for sharing this. And I just wanna quickly ask you, what is the quick criteria for homophobic stem cell transplantation for people who are listening to this episode? The hematopoietic stem cell transplantation remains an experimental approach. So it's not an NHS England approved treatment that to be made clear. But over the years has become much safer to be used. So there was a lot of concern at the beginning whether using this approach, which might bear some important side effect. The criteria to provide this deficiency is when despite having tried one of those aggressive treatment approved by NHS England, so the monoclonal antibodies, despite that, they're still exhibiting aggressive disease features with florid inflammatory activity. So despite being a treatment, they're still having a lot of relapses, new activity on the MRI. Hence, that defines treatment failure on standard therapeutic approach, and it makes totally sense trying the hematopoietic stem cell transplantation. Wonderful. I learned a lot during this episode. I hope that our audience learned too. So as we wrap up today's episode, I want to leave you with this thought. Just like a candle can light another without losing its flame, sharing knowledge and hope makes us stronger, makes us together. MS may be unpredictable, but your journey doesn't have to be walked alone. You have choices. You have strength. And most importantly, you have time to take action. So early informed decisions today can shape your future, and I hope it's gonna be much brighter. So, Antonio, our conversation today for me was like a gift. I really enjoyed our conversation. I think we brought a lot of thinking to our audience and a lot of visuals and metaphors to explain the complex underlying pathology of aggressive and highly active MS. Thanks for joining me today. Thank you for having me.
8 June, 2025 Easy Explained MS by Dr Agne Straukiene
Welcome to 'BeeWellwithMS Podcast' with Dr. Agne Straukiene, where we explore managing life with progressive multiple sclerosis (MS) as you transition beyond disease-modifying therapies. Dr. Straukiene shares strategies on shifting focus from inflammation to resilience, symptom management, and building a new care model. She discusses the importance of regular symptom reviews, neurorehabilitation, occupational therapy, mental health support, and practical tips on coping with fatigue, pain, and emotional challenges. The episode includes a guided meditation session and emphasizes maintaining a healthy lifestyle through diet, exercise, and peer support.
Hello, and welcome back to Be Well in Evidence Podcast. I'm your host, doctor Agnes Stroukette, neurologist. Today, we are talking about the moment that is filled with lots of emotions, usually when we talk about the progressive MS, to the point that a person with MS journey, when the disease modifying therapies are being stopped, what's next? It can give you a lot of disappointment, a lot of disbelief that this is happening to me and I no longer have any effect from disease modifying therapies, or maybe I'm not appropriate candidate for these treatments. Everything matters. For many, that moment feels like a cliff edge, a downhill. But I want to encourage you, and I want to gently challenge this image. Because what I've seen over and over again that it can also be a pivot point. When disease modifying therapy stop, it doesn't mean that we stop treating MS. It means we shift our focus from inflammation to building resilience, from slowing relapses to supporting life. And from there, we built a new kind of care, a new model of care. So in this episode, I want to speak not just a clinician, but someone who sat in many of those hard conversations. I'll share how we navigate that transition, what support system should be in place and can be in place, and practical ways to manage symptoms like fatigue, pain, mental health, anxiety, depression, mood changes. And I'll share some hope because there is still so much we can do for you. So tune in and listen to this episode. When someone reaches the stage where their MS is progressing despite treatment, it's easy to feel like something has failed, that you have failed. But that simply isn't true. Progressive events, whether through relapse associated worsening, we call this raw or PRI, progression independent to the relapses inactivity, or smoldering MS. It's part of the natural course of the disease for many people, but not all of them. These terms are complex. They always been. But what they really mean is that changes can still be happening even quietly, silently, unseen, invisible, as we call. And while we might no longer target the immune system, we have a lot of opportunity to target you as a person. Your goals, your function, your well-being, this is time for a care team to help you not to step back and certainly not to discharge you from their MA services. That's my opinion, and I'm gonna advocate for this. So here's what I believe should be part of every progress AMS care pathway and journey. Symptom focus review at least once or twice a year. We need to regroup on your symptoms, go through the list. If you have certain measures at the clinic, score them. There are some patient reported outcome measures. In the clinic, I do MS per discuss assessment of the symptoms, And I give a score, and I redo that assessment six months later, a year later, two years later. I keep track of that because I'm interested. I want to know where I can help you as neurologist. And you as a patient should track that too. I know journaling is not the best thing to do, but it's something that keeps a momentum. You can track and record and then see what the potential triggers, and when did this start, when does it stop. All these things matter. Also, what's important is in neuro rehabilitation. So physiotherapy, in other words. There are so many things online, private physios, NHS physios in America system and Europe. You can sometimes self refer to the service. And what you get is a tackled group of exercises for certain group of muscles that can potentially improve your function. But it's you that is gonna stick to the regime and follow the program. Without you, the physiotherapist is powerless. K? So, also, what's your home environment? Can some abide appliances be fit in your house, in your flat, apartment, room, no matter where you live. That's occupational therapist assessment, and it's usual practice in in UK. Also, if the speech and language is the problem, which usually is, a lot of people with progressiveness, if you haven't noticed, they have some facial weakness, bilateral facial weakness, which really changes how they speak. They become a bit slurry. Sometimes people have lesions affecting the posterior fossa at the back of their head and within the cerebellum and brainstem, and that causes a very specific slurred speech, like drunk speech in a way. So there are some strategies, diets, advice that people would normally get from the speech and language therapist, dietitian. And there are also cognitive challenges as we all know, but use it or lose it. Do you stimulate your brain? Do you read? Do you listen? Do you watch? Do you maintain the conversations in public? Do you ring your best friend and have a chat on a regular basis? So these things matter because that's how you occupy your brain and allow your brain to function better. Now there are some team members that could also support to help you. So one of them is MS specialist nurse, MS coordinators. These are your compass through services and emotional support. Okay? So you ring them. They may not respond within the minutes you ring them, but they will in twenty four, forty eight hours, in a week, in a two weeks' time. Their responsibilities are to talk to people and give them permission and then discuss with their consultant, neurologist, or other specialists, or refer you to the and signpost you to the relevant specialists. The other important aspects in your care pathway is your mental health. Okay? So if you are depressed, if you're anxious, if there are some other serious mental health illnesses, there is help. I know there are some waiting times to get to see the specialist, but the referral needs to be done first. Okay? So because mental health is MS health. The healthier you are mentally, the better the MS is going to be. Also, don't forget the power of the peer support, the connection, the social support, self management groups, coffee groups, exercise groups, and various different charities and societies, nonprofit organizations are organizing these events, whether face to face or online. That's a common normal practice. Now let's move and look at the practical tools that may enhance your journey. You may feel it's more meaningful and maybe even giving you inspiration. First thing and the most common thing is fatigue, tiredness, exhaustion. Fatigue is not simple tiredness. For people who don't have MS fatigue, I just wanna explain that it's exhaustion. After waking up, walking to have a shower, people feel exhausted, drained. They can't function further. They need to pause, stop, regain their energy, and then go back to whatever they started. Why it happens is because of the nerve inefficiency, it says, you know, demyelination slows down the signaling process, and it impairs the energy throughout the body. Poor sleep, people not sleeping, and they are exhausted. The heat summer is coming. It's there already. People don't sleep very well because they haven't got to cooling environment to fall asleep. Maybe some cooling mattresses could help and quite often do. Also, stress and anxiety, thoughts, and emotions, people dwell on what has happened to them. If they are too excited or are they too worried and sad, you know, that all happens throughout the night, the thoughts coming and it's maneuverating on multiple things, and that keeps people awake. And as a consequence, you haven't got energy throughout the day. So those things that I ask people when they come to see me with any MS, progressive, relapse remitting, doesn't matter. I always ask, have you slept well? Do you sleep normally well? And this is where we start improving. You know? And I very precisely because I know that that's something that you could resolve very easily. Now immediate emotions. So, obviously, there are so many different therapies from mindfulness to cognitive behavior therapy, acceptance therapy, hypnotherapy, various different activities, and plus medication. So if somebody needs a medication, they need it. So serotonin needs to be replaced, and that happens when people not saying that I'm depressed. People who tend to say I'm depressed, they just probably have a low mood, but people who start stopping looking after themselves. They don't care how they look, what they ate, what they've done, when they stop being interested in your life. So these are sort of, and fatigue is another symptom of mental health, of depression quite often. So having an enhancer of the emotions and mood, whether that comes from interventions in therapy or medicine or combined approach, that could only improve your quality of life. Also, what could help everyone is pacing yourself. So people decide to do various different things, and they just go and do things, and then they can't wake up the following day because they ever done they haven't paused. They haven't paced themselves. And it's important to break the big task into the smaller chunks of the task and rest before the exhaustion. You feel your timeliness comes in, you pause and rest. You don't go into sort of exhaustion and then rest. You have to feel and work with your body and identify the time when you're picking up into exhaustion or when you're going downhill. Just before you're going downhill with energy, you then stop and pause because that's easier to replace and regenerate your energy levels. Keep cool. Use the fans, cool showers, baths, very comfortable, breathable clothes because you don't want to sweat in the synthetic polyester clothes. It needs to be natural fabric that keeps your body freshenly. Track your energy patterns. It's important to notice your peaks and dips and plan according to Wind down, evening screen reduction, pushing the phone down two hours before bedtime is super important. What do you mean at daytime? Give it time for yourself to meditate, to listen to good music, maybe. Radio, read, just lay down in bed and dream about things or have a chat with your friend, ring your friend if you can. But try not to scroll and look on the media and stimulate your brain inappropriately. That it doesn't give you any good night sleep. Also, focus on good nutrition. Eat regularly. Stay hydrated. Avoid long gaps between the meals. If you start extending I know some of you are on the intermittent diets. By this time, your body got used to that. It's not suiting everyone. You need to discover yourself. But with energy, you need regular high nutrition dense food, not sugar, not even, multiple times of the fruits or multiple fruits because that gives you fructose, and proptosis in the body becomes a glucose. And glucose is our, sugar. And you may experience a sugar crash. So sugar crash is not a good idea because it exhausts you further. So be mindful. A lot of people make mistakes. They say, oh, I eat a lot of vegetables and fruits, but, actually, two items of fruit a day is enough because otherwise, you expose yourself with a lot of unnecessary sugar, and then sugar causes more exhaustion than before before eating sugar, before exposing yourself with refined sugar or or even fruit. Okay? So two items of fruits. Don't overdo with grapes. Grits are full of, fructose, and that could give you a sugar rush, so be mindful about this. Now pain is another factor that is very debilitating and causes a lot of grief. According to Hippocratic Oath, we cannot disregard patients who suffer with pain. This is our mission to help people with pain. So pain is a common symptom in MS, and it's various different causes that causes pain in MS. So neuromactic pain is one of the commonest descriptions and problems because pain comes from the injured nerve. So it causes a lot of, pain symptoms such as burning, stabbing, pinching. There are different descriptions to describe neuropathic pain. So there are some methods and interventions to address that. Neuropathic pain responds well to pregabalin, nevapentin, duloxetine, one of these agents. This usually prescribed by family doctors, GP doctors, or neurologists. Also, spasms and cramps often in the legs and back and arms sometimes sometimes face. And what's most helpful, there are some agents that helps with the spasms, antispasmodic agents such as baclofen, tizanidine, for example. Xantivex, which is a cannabinoid synthetic. Drink? Magnesium, four hundred milligrams at nighttime. Magnesium is a vitamin is taken at nighttime. Quite often, people with MS take it in the morning, and they feel even more drowsy and tired because magnesium tends to relax the muscle cells, and you feel just relaxed. But that's that's okay for the nighttime, particularly if it reduces your spasms in the muscles. Now MS hug is another painful experience. It's a tight band around the torso, squeezes, and it's very intense. People sometimes cry because and they go to the emergency departments because they feel like they're having a heart attack. So be careful. So, again, that's responses to our antispasmodic and neuropathic painkillers. Specificity related to pain, like, when the stiffness and cramping is very intense is because the legs are presenting with the increased tone. I call this a wooden gait. People can't bend their hips or knees or they have certain position of their legs. Like, the leg is always bent. You can't extend the leg. So that's mainly because of the ongoing spasticity. And the danger I think is that it becomes a dangerous situation. A fracture, which is the fibers that connects the muscle to the bone gets stiffened, and then it's impossible then to extend the dilemma. And it's difficult to care after people who has got this problem. So, usually, the passive active movements, some physiotherapy is a good way of managing this problem. Dystonia pain, muscle blocking and twisting some inappropriate posturing of the hands, legs. People have involuntary movements that goes into the spasms, and they can't unlock their fist, for example, or the arm moves one or another direction. It's really painful experiences. So, again, we manage that with chemicals, with medicine. Sometimes Botox injections may help if it is a constant and ongoing issue. So, yes, just be mindful about this is important. Gentle movements never gonna hurt anybody, like yoga, pilates, daily movements, walking, mobility, trying to keep the momentum and walk. It improves all these symptoms from dystonia to neuropathic pain and spasming, cramping, and and spasticity. Sometimes people use capsaicin creams, and non steroidal anti inflammatory creams. Try that. If there is some inflammation going on in the joints, it may help. Some people respond to capsaicin cream, which helps to reduce a bit of neuropathic pain experiences. TENS machine, transcutaneous electric stimulation is good one for lower back problems, for shoulder pains, for bone pains. It can be effective if you use that regularly. If you suffer from migraines and headaches, there's also TENS Lloyd's machine for headaches. You push the electrodes on your forehead to stimulate for minutes. And then if you do that regularly, it may diminish the frequency of the migraines. And then if the migraine attacks start, you can reduce the pain of headache too. Alternative medicine, which is very ancient medicine, we call this alternative, but actually this is how the whole medicine started. It's acupuncture, mindfulness. These approaches are very powerful for the pain management, believe me or not, but that's proven to be effective. Okay. Now let's talk about the mental health and mood. Fifty percent of people with MS experience anxiety or depression. Sometimes it's reactive because of the new diagnosis, life change, they're upside down. Sometimes it's neurological, but always important. We can't ignore that. Common challenges are depression and anxiety, emotional changes, irritability. Sometimes people cry or laugh, giggle inappropriately. That's cerebral. That's coming from the brain dysregulation. And coming to fog, mimicking mental health some symptoms is common. Some people experience extreme fatigue, brain fog, and that could potentially mimic, depression or anxiety. So what helps is talking therapy, cognitive behavioral therapy, acceptance commitment therapy, ACT, counseling, psychotherapy, all these powerful tools. Mindfulness reduces overthinking in your mind. It's really powerful tool, very, very old fashioned. Comes from Buddhism. Nothing to do with the religion at all. He's just learning how to, experience the present moment without reacting or responding to the environment and the stimulus. Movement, walking, stretching, yoga is number one that improves the mental health if you do that regularly and you stick to the regime and the program. Nutrition, again, omega three with an d three. Gut supportive diets, anti inflammatory diets, extra virgin, very high quality of the olive oil. I've just visited Tuscany in Italy, and I learned how the oils are being produced. So it's difficult to find a good quality of the olive oil in the grocery shop. You can't produce olive oil for eight pounds per bottle. One olive oil tree produces two bottles of olive oil. So imagine the cost is high. And usually, it costs from 20 to £40 per bottle, depends where you buy, whether you live in the countries that produces the olive oil. So you're lucky because you can get cheaper from the olive oil, farmers and makers. If you live in the Eastern European countries, there are some companies import the olive oil, but you need to make sure that it's 90% extra virgin, clean, clear, fresh, made in Italy, Greece, or Spain. These are countries that produces the best quality olive oil. So or if you live in UK, for example, or Americas or health shops, that are selling the products of, Europe, you may find a good quality of the extra virgin olive oil. You can also listen to the episode where I was talking to Frank Lickory about, olive oil and benefits. It's a great product for longevity medicine, for healthy aging, for preventing having strokes, heart attacks, and all other cardiovascular issues and dementia. It's amazing natural for wellness and long healthy life. Now peer support, if you have emotional problems, depression, and anxiety, these are challenging situations that you require a bit of a talking therapy. Whether you're talking to yourself, you may do, or you are connected to other people and you you talk your heart out. Your heart out needs to be spoken, cried out. You if you want to sing, sing out. If you want to cry, cry out. The talking therapy, the peer support is very, very important. And just bear in mind, the emotions that are not expressed gets accumulated, and then that causes a lot of problems. So if you want to look after yourself very well and you have accumulated emotions, cry it out, talk it out, walk it out, write it out, draw it out, sweat it out, or breathe it out. Okay? So expression gets you on a better journey, so you're not spiraling down. You're coming out of this barrel. Now, what the supplements could help you with your progressive MS? We discussed about omega three, but if you're consuming a good quality extra virgin olive oil from Greece, Italy, or Spain, you're okay. But, if you don't consider on the omega three, fish oil, it helps to compensate the omega threes. With our current Western diet that's coming from US, you get a lot of omega six, but less omega threes. And to compensate that, it's useful to have extra, whether it's coming extra virgin olive oil or as a supplement. Both works. Magnesium for spasms as we discussed, leafy greens, pumpkin seeds full of magnesium. Zinc and selenium are other antioxidants. It's good for brain protection. It comes from lentils, eggs, basil, nuts. And if you are anemic, that's another common reason why people feel so fatigued and exhausted. It improves their nerve function if you take some extra iron and potassium, particularly if you have deficiency. So nutrition advice for getting extra iron is tofu, sweet potatoes, bananas. So these are foods that you could consume and get extra support. If you are supplementing yourself, always check the level. I think it's important to keep an eye on the level. Too much of a good thing can be also harmful, so be mindful about this. Nutrition wants cure MS as we know, but it can make your body much more resilient and healthy. Okay. I think it's time now. I always advocate for meditation and mindfulness, and I would like to provide you six to eight minutes guided meditation just to use that opportunity. If you listen up until the moment, I'm very grateful because you're getting all the benefits from this episode. You are going to be guided by me, and we're gonna meditate together. So use any cushion that you've got, any pillow, maybe you're in bed, maybe you're sitting. Just find this comfortable position of your body. And when you're ready, if you wish, close your eyes. But if you don't want to close your eyes, you want to watch me if you're watching me on YouTube or Spotify or many other platforms. Keep your eyes open and see what I'm doing. But in the meantime, if you don't see me, close your eyes gently, and I would like you to invite to make a moment just for you. You don't need to do anything. You don't need to move. You don't need to fix anything. You simply need to be. It's a very short guided meditation based on the yoga nidra or yogic sleep. It's one of these powerful meditation branches that really helps to unwind and rest your brain. It's a powerful tool to rest your nervous system, calm fatigue, calm your nerves, and invite the sense of the wholeness, especially very, very helpful in progress to MS. So let's begin. Allow your hands to rest by your side. Palms open. Take a slow breathe in through your nose and slowly and easy breathe out. And let's do that one more time. Take a slow breathe in and as you exhale, blow it down. Inhaling, calm. Exhaling, tension. Now breathe as you would normally breathe, and bring your attention to different parts of your body one by one. As I name them, just feel them, but no movement is required. Starting with stealing your right hand, your right thumb, your right index finger, middle finger, ring finger, little finger, your palm, your back of your hand, your wrist, your forearm, your elbow, your upper arm, your right shoulder. Feel the entire whole right arm. Now let's move your attention to the left side, your left, your thumb, your index finger, your middle finger, ring finger, your little finger, your palm, your wrist, your forearm, your elbow, your upper arm, your shoulder. Now feel both arms at the same time, resting deeply. Now bring your attention to your head, back of your head, your upper back, your middle back, your lower back, your entire spine, moving to pelvis, your hips. Bring gentle awareness of your legs starting with your right leg, your thigh, your knee, your calf, your shin, your ankle, your toes, your big toe, your fourth toe, your third toe, your second toe, your little toe, your entire right leg. Now move your awareness to the left, left thigh, your knee, your shin, your calf, your ankle, your toes, your big toe, your fourth toe, your third, and the second, and the first toe. Now bring your awareness to the entire body from the top of your head to the toes. Now scan your face. Your jaw is relaxed and soft. Your face is relaxed and the eyes are resting. Your forehead is flat. No wrinkles. Let the whole body feel held, feel supported, feel safe. Repeat to yourself gently. My body and mind is light. My breath is steady. I am safe. There's nothing I need to do. Or you may have your own words to yourself that I allow you to to repeat to yourself. Let any sensation plight. Let fatigue be met with compassion. You're not broken. You're not lost. You are a field of awareness, full of light, resilience, and rest. Now take a breath. Feel the ground underneath beneath you. Gently start wiggling your fingers, your toes. And when you're ready, open your eyes. Look around. Can you hear any sound around you? Can you see things? That was yoga, nidra. A practice that can be done anytime, anywhere. And you could always come back and listen to the same track and be guided. It helps to unwind and rest and calm the nervous system and reduce the pain and restore your your energy. So let's finalize this episode. If you are at the point where your MS is progressing and disease modifying therapies are no longer being prescribed, I want to say you clearly. You are still treatable. You are still valuable, and you're still the whole. This phase of MS isn't about giving up. It's about shifting forward towards living better, towards living healthier, towards living full on life with tools, with people around you, practices, and wisdom that uplift and empower and inspire you to move forward. Your neurologist, nurse, therapist, or peer or friend or buddy isn't there to fix you. We are here to walk beside you and help you walk your own path with strength. For more support, head over to www.bewell with MS or any charities, MS Society, MS Trust, MS Together, Shift MS, European MS platform. You'll find some guides, groups of people, reassurance that you're not doing this on your own. You're not alone at all. And if this episode resonates with you and you think you could share with anybody else that would benefit and get right help at the right time from this episode. So feel free to share, comment, and until next time. Take care. Take care of your mind, body, and your spirit. You deserve to be well, so be well. Bye for now.
25 April, 2025 Guests Interviews and Charity events
In this episode of the 'Be Well with MS Podcast,' Dr. Agne Straukiene welcomes Frank Licari, an Emmy-nominated actor and producer renowned for his work with the Blue Man Group and PBS's 'Living Longer, Living Well.' Frank shares his inspiring journey from theater to producing health documentaries, and how his personal experiences, including his brother's battle with cancer, fueled his passion for promoting wellness. The conversation dives deep into the Mediterranean lifestyle, emphasizing diet, community, and lifestyle habits beneficial for mental and physical health, especially for those living with MS.
Welcome back to be well with MS podcast. I'm your host, Doctor. Agnes Rogan, neurologist. And today, we are going to talk about exciting things. I have to say that this is the closest I've ever been to a real celebrity. Today's guest is Nona Baba, the Telly and Adi award winning actor, three time Emmy nominated host, and producer director whose career spans an incredible thirty two years across theater, television, and film. You may know him as a former blue man from the legendary Blue Man Group or from his PBS hit show on the town in the Palm Beaches, or more recently from Living Longer, Living Well, which dives into the secrets of longevity through the Mediterranean lifestyle. Frank's work is not only captivating, it's purpose driven with a mission to inspire healthier, more connected lives. In this conversation, we explore his journey from Off Broadway to any nominations, his passion for storytelling, and how film and media can be powerful tools for promoting wellness, even for those living with chronic conditions such as MS. So get coffee, maybe grab a lemon water or a green tea, and enjoy this energizing episode with this multitalented Frank Licry. Welcome to the show, Frank. Thank you so much. It's a pleasure to be here. That was a wonderful, wonderful introduction. I wish I wish I wrote my own as good as you just did for me. I appreciate that. Thank you, Frank. I try I try my best. I try my best. Oh, you did great. I would like to learn your journey of reinvention from Broadway to living longer, living well. What inspired you shift into producing health documentaries? Yeah. It's interesting. I have always been on that health kick. My whole being in the business, you always try to stay in shape and you try to stay, because you're always in front of a camera. And I'm as I hit my I'm in 52 now, about to turn 53. So as that kind of started to happen, the aging, you start to think more about your your health. But what really threw me over was my brother got cancer in 02/2019, and I actually lost my brother two and a half years ago, my younger brother. And I'm sorry to hear that. It's fine. Yeah. It it was a rough time, and it was something where I could tell he was regretful. He hadn't taken care of himself through his later years, and it really inspired me. I went through this crazy phase of, okay. I'm gonna I'm gonna go completely vegan. I'm gonna I try I was a vegetarian for a while, and I went all through this sort of map. And then out of nowhere, I've been hosting this show on PBS for many seasons, and they called me and they said, hey. Would you like to host this other show? And I said, okay. We talked about it a little bit, and it was, living longer, living well. And I have many all my family is actually in Italy, so I'm very familiar with the Mediterranean diet. I grew up eating the Mediterranean diet. That's all my mom cooked. So when we started talking about it, I said, oh my gosh. I'm this is I'm already an expert at this. I know this side of the of health. So Yeah. It threw me down this path. And so we did that show. I actually hosted a neuro arts conference in West Palm Beach last year, and I have a new show coming out that's strictly about olive oil based upon the Living Longer Living show that sort of opened up this whole world of, wow, this is how I grew up, and now I'm in America because I spent a lot of time in Italy as a child. How do I bring this lifestyle that has been around for centuries in the Mediterranean? How do I bring that into my own life, into friends' lives? And so that's been a little bit of a personal quest over the last three or so years. Frank, such an inspiring story, and it makes me think we always have this kind of deep why we're doing. And your personal experience was driven, your agenda and purpose, to not that you needed the most to live well yourself because as a performer, you have a lot of physical you need to have a lot of physical and mental effort to Yep. Do the business you do the best. And also the exposure is Italian by heritage. You by default, you already have the right set of skills and knowledge how to live well. What inspires me the most is that you are keen to share your knowledge and information with the audience that you work with. And I think nothing is more boring than receiving the leaflets about what oils to use for cooking, what type of food we should cook. If it comes in sort of a documentary film, that is already uplifting our spirits. And if it is well documented documentary film, I think we're all glued to the screen to learn more, and I'm just so proud and honored to talk have a possibility and a chance to talk to you about this into more detail. I guess maybe let's dive a little bit into lessons from the Mediterranean lifestyle. What are the most powerful lifestyles and habits you discovered? We all know that eating Mediterranean diet, which is full of the nourishing vegetables and fruits and meat and fish and all that and drizzle with the oil and oil. We've we've got this, but anything in particular that we all could learn from you that you discovered and people could apply living with a chronic conditions that is simple and convenient for majority. What are your lessons? Yeah. What's interesting, as you go, I went through Greece and I went through Sardinia and all through Italy. And now with the olive oil show, I went through almost every microregion in Italy. And the commonalities and I will talk I wanna talk in-depth about the olive oil side because there's actually things that I had no idea about until I did this particular program and produced that show. But what I found about the Mediterranean diet is first of all, if you go to Italy, the things you do not find on every street corner, as we do in America, you'll never find a gym, and you'll never find a vitamin shop. They don't exist. And I brought Americans with me when I do did the show. So my staff, my crew were looking, hey. Where's the gym? I and I started laughing. I'm like, we're in Sicily. There is no gym. This is there's not Sardinia. There's no gym here. The gym is the lifestyle, and that was the first thing I learned Is that a year and you said it best. There's nothing better than visuals. Right? We can read all we want, but when you see a hundred plus year old man or woman who is in front of you climbing mountains and doing things you're going, woah. Okay. I'm used to in America, once we hit 80, people are starting to look hunched over and they're walking slower and all these things. And I go to these places and I'm saying, how are these people doing this? And the commonalities that I found were actually more than diet. It was about laughter. It was about communing together. It was about dancing. And it's interesting that we joke around once we get older. Yeah. That's kid stuff. All the kid we look we make fun of kids who are playing. But really the lifestyle of the Mediterranean diet is also the Mediterranean lifestyle, which is, hey. It's not all about work. It's not all about getting ahead and working as hard as I can to make as much money as I can. These are communities that stick together. They sit together on their front stoops and talk, which is a novel idea. It used to happen everywhere. It doesn't happen here anymore. There's the entire lifestyle. Like, I went to Greece, and I spoke to a gentleman there who was our guide. And he and I said to him, it's funny, with all the talk I hear that Greece is economically depressed, I see people out everywhere. And he said to me, we don't care about where we live here. We only care about how we live. And they do not we say we have a word in America called skimping. We don't they don't skimp on going out, being with each other, enjoying good food, walking, which was the maybe the biggest thing. The communities are walkable. And the more walking these people do, of course, we know this now here. We have to walk 10,000 steps a day, and this is the new thing. Right? But that's what they've been doing their entire lives. And they're 95 years old and a hundred years old, and they're not on medications, and they're not worried about their backs or they're walking, and they're laughing, and there's dances happening regularly. And that was one of the biggest things I've got I got from the military. I was expecting to hear all of the food, which we like you said, we know there's research out there. But to see it, and then you realize that the Mediterranean diet is different in Florence than it is in Greece than it is in Sardinia. It's different. There's not one singular thing, but the commonality is that life is the exercise. Life is the energy we put forth in things. It's not, oh, I've gotta finish work so I can go to the gym or go get my vitamins. They're getting it through their life. And when I went to Sardini, I'm sure you saw the show, I mean, there were a hundred and 10 year old men that are still shepherds. They're living and they're walking in the now I understand we don't live in the mountains here, but you can walk. I mean, I live twenty minutes outside of New York City. You can walk the entire city. Right? Like, you can walk Manhattan from the Lower East to the Upper East in pretty easily. Most people will take Uber and taxis and subways. You can walk. And that is the thing that I found that I was the most interesting because I wasn't expecting it. It's lifestyle. It's not necessarily diet as much. Yes. As the diet is very important, and we'll get into that. But laughing, dancing, getting together regularly to me was okay. This is the commonality that I saw. Wonderful. I'll give you just a bit of experience. I just returned back from San Diego. Uh-huh. Sunny San Diego. So there was a the largest conference in neurology, so we call this AM, so American Academy of Neurology. Thousands of people come and they're all neurologists. They have very different interest in neurology. One is Parkinson's disease, another one is MS and dementia. And I had an honor to spend some time with Italian and a and a person from Greece. Yeah. Two different nations. So, Okay. So the first shocking feeling or experience was that we couldn't find a chopped tomato or a for the breakfast menu. Right? So you go into the you can get in the format of the sauce like a kitchen. But you haven't got anything to push on your plate. So by day two, we went to the grocery shop, and we bought some granolas, kefir, yogurt just to make that supply for breakfast and eat it individually. Although we were missing the opportunity to share our experiences at the table because we ended up in having breakfast in our rooms because of that sort of Of course. And then the other experience, like, culture and the the difference that I went with these colleagues of mine to the restaurant. And, again, so the communication around the table, you end up in I end up in having someone else's plates food on my plate because it's a sharing is caring. The way people communicate whilst having dinner, an extra layer. And, really, I feel so important because I end up in that getting someone else's orders on my plate. And this is an amazing experience. And I think quite often as adults, we lose our childhood joyfulness. As you mentioned, whilst we are children, we are dancing, we're playing, we are we are free. And the moment we become adults, we lose all that. And I think if you are listening to this episode, think about yourself as a child. What's the priorities and what the goals and purposes did you have at the time? Could you bring some of the domains and elements into your life as an adult? And I think the other thing that I would like to focus is that we're going to the gyms. We we have to wake up at 6AM if you live in New York. And I had another meeting with my colleague who lives in New York and says, my day starts 6AM, and I go to the gym, and I go I do all the all my day until 7PM, and then come back and I cook. This is wrong. As you mentioned, the life is an exercise. And it is such a beautiful saying. I think what we would like to learn from you, Frank, is how to tell the story. How can we use the power of the storytelling about the health? We go to the clinics and we see people who are obese and with diabetes. By the look at them, we look at them, we know loads of health issues. And then we know that the problems that they have is in lifestyle, that they have such a wrong how can we convince these patients that enter our room? How can we tell the story that is powerful and is gonna help most of the people to understand Yeah. How to manage their health? Yeah. It's interesting, especially in this country. No. I'll say I'll just say the Western world. And it's been marketed by The United States. Let's be honest. It's a it's this and like you said, we have to get up to make an effort to be healthy. Right? Then we ruin our bodies the whole day. Right? We eat fast. We eat wrong. We run through stress and physical abuse, and we sit in chairs hunched over until 07:30, eight o'clock. And then we expect that healthy meal at the end, if we have one, is gonna fix everything we just did to our life. So it's really a mental change. And I wanna add something to what you said about being a child. I don't think we lose our childlike. What we gain is inhibition and judgment. We still have the children inside of us because I see it in adults every once in a while no matter where you are. Grown men, now albeit, sometimes with grown men, it takes an alcohol or something to get them out of their shell. It's not always the best way, but it brings out this side of them that you go, oh my gosh. This is a 45 year old man acting like this. It's unfortunate that it takes that type or a sporting event to get men to get to that level of in a their they get their inhibitions. They usually have to stay so controlled, and they're not allowed to cry, and they're not allowed to do all these emotional things that are weak. But the truth of the matter is it's a mental shift. It's a mental shift in our in ourselves as much as it is our physicality. That's why I think it's important to see it. That's why I say to you when I went to Sardinia, I saw a hundred and plus year old men with this. You have to seek out these things. I think you remember when the documentary, oh my gosh, Super Size Me came out, which was the one about where the gentleman, I'm trying to remember his name, he overate on McDonald's for thirty days and changed I don't know if you saw that one, but it was a it was a it was probably I don't know. I guess it's probably you may be too young to remember it in during your studies, but I'm a little older. So for me, it was this life changing thing where it was like, we knew McDonald's was bad for us. We knew it. We all talked about it, but we still went through the drive through. And I grew up with a father who smoked and was a diabetic, and I knew it was bad for him, but I didn't realize it until he passed away at 64 years old how bad it was. And that changed my entire direction. So it was a visual thing. Right? But to supersize me, you saw what transformed in this gentleman for thirty days just eating McDonald's. That's all he ate. Morning, noon, and night. And it completely changed his entire metabolism, his body structure. And once you saw that, you went, oh, wow. Okay. Alright. Now it hit home. And I really do believe that we have to seek out those types of programs, whether it doesn't have to be mine. It could be we had if you remember the blue zone diet that came out on the on on Netflix. There are things out there, but we have to want it. Very much unfortunately, I'm sure you run into this as well. I was a teacher for a long time. I had my own performing arts school after Blue Man and saying things. You're relying on a lot of things to happen for that information to be retained and then acted upon. But when you see things or you are able to be there's nothing better than when people say I hate yoga, and then they take a yoga class and actually do it and go, oh, wow. This is not only more difficult than I thought it was. It's actually I feel different. You have to experience things. And you said at the at the lunch table, you had to go out to the grocery store or at the breakfast table, you had to go out to the grocery store. Yeah. Because we just accept status quo most of the time. We just go, okay. This is what's here. No. We have to force ourselves to do better. And and I guarantee you, if four people saw what you and your colleagues did, they probably would have went, hey. You know what? That's a good idea. You have to really allow yourself to be affected, and many times that is visually easier because sometimes we are to quote the bible, we are doubting Thomas'. Until we see it, we do not think it's true. We have to see it in real time, and that's why I think it's important to seek out programs like that. And then you have to do it. You have to do it yourself to see the effects. It's in America, we work out, but most people start on January 1 with that new that resolution. And probably about a week and a half later, they're like, yeah. No. They don't they don't wait for the transformation to start. Once the transformation starts, then it becomes an addiction. And that's the same thing that happens with bad things. Right? Once we see it transform our body, if we like it, we tend to do it again. And healthy foods are like that. Once you have that thing was, oh, I don't feel tired anymore, and I ate. And that's what happened to me in Italy. Right? You eat and you go, wait. I said, I didn't gain weight. Why didn't I gain weight? I go back home and I eat the same way, but what am I doing wrong? What am I doing different? And there we go back to, besides the way the food is processed, the lifestyle and people and you go, most of these people are thin, and they don't look as heavy as we do in America. Why is that? So it makes you questions. Traditionally, and I'm only speaking for Americans at this point, even though I'm Canadian, by the way, by birth. I speak for Americans because they don't. They've started to more now, but they don't tend to travel. They don't tend to seek out anything more than what they already know. And it's difficult to change their minds by someone like you who has the knowledge and may say it and may tell them, but it's very difficult until you see it, until you experience it. Absolutely. I I couldn't agree more. And I think just to add what you just said, I think equally people who are practicing bad habits like smoking, drinking, eating ultra processed food, they just so much get used to that. They they don't see that this something is wrong here because they get used to that sort of, slugginish crap feeling every single day because that's their norm. They don't have a vision or feeling how it would feel, like, if they've done opposite things. Yeah. And I guess, as you said, the education is super powerful. And if it is visually appealing and tells the story, it's a storytelling. And I think what you just inspired me, Frank, is when we are giving these blind leaflets with a human being in a sort of a quote say, oh, eat healthy, eat well because that will improve your outcomes. I think telling the story maybe in the format of the short video, which we these days, it's easier to create animation using AI or whatever. And maybe putting the QR code on that leaflet for them to scan and actually get into the story and understand the impact. We shouldn't be classing bad and good food because we all have, on occasion, some cheating days as we're called. Of course. But I guess, you know, as one of the specialists that I interviewed a day before, to be honest, We agreed that probably we should class foods into always and sometimes. You know? I would agree with that. I would agree with that. And I also think it's there's a marketing ploy too, right, that we have to be aware of. The it always seems like the companies that have the worst maybe the I won't mention names, but the companies that are most creating food that is bad for us have most of the marketing dollars. So there's no coincidence that when you watch commercials, even if you watch a sporting event, which I'm always shocked about, you're watching a sporting event filled with healthy individuals who are just in the at the peak of their physical they couldn't be healthier. They couldn't look healthier. And then a fast food commercial, a beer commercial, a chip commercial, and a every medication under the sun commercial comes on as you're watching these games. Even when you're watching on now we don't have as many commercials as we used to because we're watching streaming. But even if you watch, you know, what the banners are, what the pre they're always those types of commercials. You never see you're watching a soccer match or you're watching a basketball game and healthy living, or you don't see any of that. Hey. Grab a quick bite at the blah blah, and it's mind boggling to me. But it has been marketed to us as that is think about it. We call it our cheat day. Why do we call it that? Because we've been programmed to think that food is tasty. It's a treat. We've been programmed to think that is a treat for us. Right? So if my cheat day is, how do I make my body as unhealthy as I can for the next three hours? That's my cheat day. And supposedly, that's supposed to make me feel like I was a good boy all week, and now I'm going to get to eat the good food where I've been tormenting myself for six days in eating the stuff I really don't wanna eat. It's a marketing tool. Right? We have to stop calling them cheat days and treats, or I get to reward myself with a awfully fat or an Oreo cookie that's not even real food or whatever it is. Right? Those are the rewards for being really good. No. The reward should be, hey. I'm gonna eat this incredibly healthy tomato like you said, or I'm gonna go now I'm on this extreme olive oil, healthy, and there are differences. Extremely well, early harvest, high extra virgin olive oil. That to me makes me smile now. That not so much, oh my gosh. I know when I'm having a cheeseburger, it's not a treat. I'm gonna feel terrible after I'm done. Yep. French fries, whatever. I know I'm gonna feel awful. It's but it's in your brain. It's marketed as, well, this is a treat or it should and it's unfortunate. So it's a marketing thing too. So there's another way for you to visually start to change the conversation a little bit. We have to get away from that that because that's how the companies market it. Don't you wanna take a break today? And it's the KitKat bar. Right? And don't you wanna the be part of the billions who are eating at the this particular restaurant? So I think that's part of it as well. And we were wonderful marketers in America of the worst possible food you could possibly put into your body. They love marketing it. And cigarettes and beer and all the fun things. Right? Yeah. So people don't believe so disagree on that. So be selective. Use your mind. Use your experience. Use your knowledge. If you don't know, ask the doctor. Ask the nurse. Ask professional people. You know? I have patients with MS who comes in and they have breakfast and it's like cereal full of sugar. It's hard to listen to the stories, and I quite often ask people to take through what exactly do they consume, what they eat, just to have a sense and feel because the way they look, they don't look like they're eating tomato or cockamoo or any other leafy green. So then you dive deep into and a lot of consumption of sugar, which causes cancer, causes immune diseases, causes worsening of the underlying chronic diseases, etcetera, etcetera. So we have to be mindful. So although stories that are presented on the media, YouTube, various different other channels, Netflix. But the ads in between, even if they talk about the healthy living, the ads of of the chocolate bar is really not a healthy option. And you're so right presenting in a way that cheating days are not that rewarding days. They are still very negative and makes you feel awful overall. We yeah. We have to take and I know you do it, obviously. It's your profession, but we have to take charge of our own health. We really need to. When my brother was going through cancer treatments at the hospital, they were and I took him off the food, but their food was outsourced. The hospital wasn't making their own food. They were bringing in a catering service. And these cancer patients were eating, and I'm not even kidding, and it made me angry at the time. Now I can laugh about it. But I want I went in to visit my brother one of the first visits because I came home to take care of him from The States he was in Canada. He was eating they had meatloaf and just the worst possible and sodas. And I'm like, this is a you're in a cancer hospital. This is what you're eating? Didn't they they told us the first thing to eliminate would be red meat and sugar. And he was eating that at his hospital. So you can't even and, well, in this country, I don't know I can't speak for other countries. And when when I say this country, North America, Western here, where even the health organizations, I feel like sometimes, are in cahoots with the pharma organizations. And it's if I'm going in for cancer treatment, I should be eating there should be a healthy diet in the hospital. But because it's not cost effective and it's not good business, we're gonna feed you just like we feed anybody at a cafeteria at high school. And that's really what it was. It was cafeteria food. And so how do you expect people to get healthier? We have to take charge. So I took him off. I told him, don't do not deliver any food to my brother. My mother and I proceeded to make food for him every day of his treatments and brought him in fresh juices and fresh foods and things like that. Unfortunately, it was too late for him at that point, but we have to do it before that all happens. And as soon as you see yourself putting on weight, it's not about the look, and that's the other thing that we could talk about. And we are programmed that to be overweight, it's about a looks thing. It's about a aesthetic. Right? You don't look like Gisele Bundchen, so you should go throw yourself off a cliff, or you don't look like whomever. Let's use the other side, Tom Brady or whomever you wanna talk about. You don't look like Ronaldo. So whatever it isn't about aesthetic, It's about what it's doing to our bodies, to our hearts, to all the diseases that we are just enabling. Right? Because we have all of these potentials inside of us to create diabetes, n m s, and Alzheimer's, and all of these things. We can keep them at bay by keeping our heart healthy and our brain healthy, but we don't. And then we get angry when we get sick and say, why me? And why do my joints hurt? And why does this hurt? And why am I only 45 and I can't play sports like I want like I used to? And those are all the things that it's too late at that point. Right? You have to start it sooner than later before you get to that point of no return where you're too heavy that working out, unfortunately, becomes a chore, and it's like it's painful. And you get on medications to numb the pain, and there you are. Vicious cycle. So the more you are in pain, the more you're obese or overweight. So the more challenging for you to commit to the lifestyle healthy lifestyle exercise program or making food, fresh foods, it's an organic whole food for yourself because you have no energy to do that. So I guess we are biological robots, and our body functions at the molecular level. We can go and scrutinize that to the mitochondria, which is our organelle of the cell that supplies the ATP energy for the cells to function and supply all the nutritious, rich, dense products to our cells to contract, to relax, to produce movement, to pump the heart. And these kind of nutritious food and ultra processed foods, in particular, these classed as damaging our cells in our body is only gonna harm and take all the vitality and energy that you have produced as a human being. But taking away that chance for the cells to function because you're exposing yourself with a huge amount of alcohol, sugar, processed foods. So I think what we're trying to do here with Frank is to highlight the issues. And I know multiple people now listening to us and thinking, we know that. We already know how can we change our behavior and what I guess, as we started, is your personal why. Once you find this why internally inside you, you will find how. It's their individual story to every single person on this earth. I would like to learn more about olive oils. You said you're gonna tell me the secrets. I never heard any more secrets than just extra virgin, which I purchased in the grocery. That's the problem. So, yes, I'm gonna tell you a few things that may blow your mind a little bit. But Okay. The majority of olive oil that we get in the grocery store is already rancid before we put it into our systems. We just don't know it. And so the entire and this includes all of us everywhere here in the Western world because we don't we've actually never tasted what a real good extra virgin olive oil tastes like because we've been fed such bad versions of it for so many years. And we go to our grocery store and we buy our $12 bottle of olive oil, and we think, this is great because I'm having olive oil. But the problem is if we think of olive like a juice, like a fruit, which it is, we have been eating and consuming, and I say eating because it is a food, we've been consuming the equivalent of spoiled orange juice or spoiled milk for most of our entire lives. Now I say that, is it better than consuming canola or soy? Absolutely is. Yes. But you are also consuming rancid olive oil most of the time. So I have a show coming out that will be actually, it's already out in Florida. It's gonna be coming out nationally on PBS called The World of Olive Oil. Myself and my good friend of mine, olive oil expert, Phil Bicchino, basically traveled the world talking about this and researching high extra virgin olive oil. And what I mean by that is and I'll relate it to your listeners and viewers here. So a good goodbye early harvest olive oil. That means that it's been harvested properly, and it's gotten to your table in the right amount of time, and it has been shipped, processed the proper way so that it retains its value, has a high polyphenol count. Probably, you've researched polyphenols in your research, But a an extra virgin olive oil early harvest has as many as 450 milligrams of high polyphenols per kilogram, which is amazing. So, obviously, the oleic acid and all those things that are positive for someone with MS, but a high extra virgin olive oil, a very high quality one, actually has higher content for all of the things we're talking about, which is from which is the oleic acids, which promotes the Treg. I'm not a doctor, but you know what I'm talking about, the fatty acid oxygen Yeah. Basically, for the late person audience, the polyphenols are strong antioxidants. Yes. So it it diminishes the the extensive distress at the cell level. So what I just talked about is the mitochondria, the function of the cell. So if you expose yourself with loads of antioxidants, your function is much, much better. So it has got anti inflammatory properties. That's why it's very powerful in in autoimmune conditions and inflammatory conditions like rheumatoid arthritis, MS, Crowe's disease, etcetera, etcetera. So let's dive deeper and understand from Frank how often should we consume olive oil? Does it need to come with porridge in the morning then main meal? Is it lunch and then dinner? What would be proposed advice? So as we go to this Mediterranean diet that we talked about at the beginning, the other commonality, whether you were in Greece or whether you were in Sardinia, whether you wherever you were, is that olive oil and high quality extra virgin olive oil, and we'll talk about that in a second, was consumed at every point of the day, and it's the only olive oil they use. So the misnomer you don't fry with extra virgin olive oil is a myth that was actually put out by the canola industry. You do fry with it, and the proof is not from me. It's from everyone that's ever grew up in the Mediterranean. That's all they do, and that's all they did. So they're they seem to be doing pretty well. So it's not going to kill you. It's not gonna be bad for you because it doesn't have a high smoke point like they talk about. High quality extra virgin olive oil at every meal. And I'm talking they're starting to use it again because olive oil goes back eight thousand years. So in the Roman Empire, it was more important to them than wine. And the Romans understood the difference between bad olive oil and good olive oil. They had and most people don't know this, but I'll just say it because the lay people don't. There's no black olive and green olive. It's all one olive. It's just a maturation process that's different. So there's no difference in those olives. It's one olive tree. Right? If you pick an olive at the right time, an early harvest, and you make and you know what you're doing, now they know more than they did a hundred years ago, the type of olive oil that they're making now would be the equivalent of how Americans used to drink coffee, and now they understand what a cappuccino and an espresso is. Back then, if you grew up in America, you only drank instant coffee, Seneca, all these brands. Now we understand a higher level. Or what happened with wine. In the eighties, I remember it was just table wine. Nobody knew the difference. It was either a red or a white. And now everybody knows what a Barolo is and a Sangiovese and all these other different varietals. That's happened to olive oil. So when you have olive oil, you're having it with your morning with your my, my cousin who is visiting right now from Switzerland, who I haven't seen in thirty five years, she's with me now, she pulled out olive oil. She said, do you have any olive oil? We made pancakes for breakfast. My wife makes them. She put olive oil on her pancakes instead of butter or Nutella or anything else that people would fill it with. She may she and I I don't even do that. And I was like, olive oil on pancakes? This is astounding. Oh my gosh. I've never even tried this. I've gotta try it. Because so they're putting it on ice cream. They're putting it in coffee. They're doing it because we understand now. But, again, high quality. If you're buying at the grocery store, unfortunately, I'll give you a couple of things. One tree, and this is all from my friend, Phil Bucchino. Shout out to him. He's the expert that's taught me almost everything I know about olive oil. He's my cohost on the show. One tree produces two bottles of olive oil per year. Now imagine when you think of all the olive oil I always have this when I think of chicken. Chicken is used all over the world in every cuisine, but I never see a chicken farm in America. I'll leave that information to you. Do it do with it what you will, but I feel like there's not enough chickens out there for the amount of chicken we eat. So I don't know where the chicken in our area comes from, but it's not always gonna be necessarily natural chicken. That's the way I look at it. And olive oil in the same way. We have a lot of, quote, unquote, extra virgin olive oil in America, but we don't have regulations here. So we can call anything extra virgin in the Western world. In Italy, you can't. So if you had a bad harvest, you can't go and put that in a bottle and call it extra virgin. You call it other things to fool people. Light olive oil or whatever, or you in inject it with coloring and aromas and make it what you want it to be. My new revelation is that there's only a real minimal amount of producers in the world that are making real extra virgin olive oil. I know them now. We'll be giving out those lists soon. But right now, I can tell you I did not buy olive oil at the grocery store anymore. I haven't for a very long time. I get it all imported to me from people that I know. They do the things the right way. You wouldn't even know their names, most of them. They're not mass produced. You cannot mass produce and sell an a bottle of olive oil for $8 and think that it's extra virgin because you're only producing two bottles per tree. So when you know those facts and when you watch the show, and I'll send you a link after our podcast here, I'll send you a link to watch it. When you realize what's going on with olive oil, that's also gonna change all of your habits and all of your research when it comes to that as well. So I'm, like, very excited to get this out to the world as well. And that's gonna be a full series that we're gonna go around the world and just talk about all of these things. And it's be very relatable to your audience as well. Amazing. I just thought, for my dinner tonight, I'm gonna pour extra virgin oil, which I actually purchased from Italian maker that comes in there sort of a in a very nice bottle, which looks like a vase. Yep. It has got a little plug that it's Yep. It's quite challenging to unplug it. So I think I've got the right one. So I'm gonna can I use it for you? We will talk off camera about that. I'm not gonna bad mouth anybody's olive oil, but we'll talk off camera. Alright. And then I expect, Frank, that your next serious moving away from the once you've done your olive oil is gonna be coffee beans. I hope so. I hope coffee in general, talents like espresso and the rest cappuccino in the morning. And it's such an instant to have it in the afternoon cappuccinos. Love it. So we all know that. Just to for the audience, coffee is really beneficial because, again, it's full of the flavonoids, which is antioxidant. And if you consume coffee no more than three cups a day, you prevent yourself from getting a stroke. Okay? So it's a real evidence based knowledge. There are studies done, so you shouldn't exceed more than three cups. So there is a limit, But moderate amount really gives you that nourishing preventative for developing vascular cardiovascular in stroke events, which is blocking the vessel and causing some ischemia, blood supply issues within the brain or heart. Okay? So excellent knowledge that we just received from Frank, and I would like to move into a bit of a sort of music, present movement Yes. And your your experience as a former Blue Nile group performer. What role do you think music and movement play in in neurological health and mental well-being? Because they are interconnected as we know. There's no question about it. The it's funny that I told you I hosted this symposium on neuro arts sciences in Florida last year, and it was exactly that. It was movement, music, and rhythm, and how it helps cognitive function. And so I studied music from the age of four up until today. I played multiple instruments, and one of the things that I've definitely always said is that the music in my life has informed who I am as a person and how I do things. And there is something about connecting. I think people forget that the first thing we ever hear in our lives, the first thing is your mother's heartbeat. So that's the first thing. And if you think about that, we all have rhythm in us, and there is not one child, toddler, that does not dance and bop around and skip and sing at the top of their lungs and make all of these noises that we always go, oh. As an adult, you go, can't you quiet that baby down, please? We forget that they're experiencing. And I wanna go back because you said something very interesting earlier on, and I wanted to put to forward on it, and now I'm gonna do that in this segment. We lose as adults our sense of discovery very early on, our sense of exploration because we think we know everything. And you mentioned blue man a couple of times, and the one thing about blue man, if you've ever watched the show or seen the it's yes. We make music, but the blue man character discovers everything that character uses throughout the show for the first time. So we have funny little what you might think are silly gags where we actually use a fork, but we don't know what a fork is. We have to discover it. We don't know what a balloon does. We don't know what sticks do. And so we go back to this childlike place in our lives. And when we lose that, you said it earlier, that's where things go wrong. And music, movement, singing, why do we always say, oh, I sing in the shower? Why do you think we all sing in the shower? Because we feel like no one else can hear us. Why? Because we're trained to be ashamed or to be embarrassed by the fact that we don't sound like Adele. Guess what? Not everybody sounds like Adele, and even Adele doesn't sound like Adele sometimes. And we get tricked because they go into the studio and they sound really good. You have to it's okay to make noise. It's okay to move your body more than sitting up and standing and walking in a straight line. That's why I think music and sports are very important for children. It puts a foundation into them that, yeah, it's okay to express myself by more than just talking or standing around. When you realize that you can actually dance anytime, by the way, there's nobody that says you can't dance down the street. Nobody. No one's ever put a law out that says you can't skip. We let children do it, and we go, oh, isn't that cute? But as soon as a 20 year old does it, you go, oh, they must be crazy. What what's going on over there? We should put them away. Why are they skipping? So I think it's extremely important. Again, this goes back to our mental reprogramming of what we think of as a treat, what we think of as decorum or being an adult or being, quote, unquote, civilized. Even back to your coffee thing, we're programmed to think that coffee in our country, it's all about the caffeine. It's all about the energy. It's not about anything else. It's just a k. If I'm gonna drink seven cups because I need the energy, we don't talk about the health benefits, which is why you can have horrible coffee in this country, and they don't care. It's not about taste or enjoyment. It's about pounding it back so I can they we use it like cocaine, let's be honest, in this country. Right? So we use it as a drug to keep us going. And all of these things that we're talking about, music, song, healthy eating, living, all of these things, we have made them chores. Going to the gym is a chore. It's something I need to schedule. Eating healthy is something I do, but then I give myself the treat. Dancing and skipping and singing is not for adults unless you're a professional singer. I don't wanna hear your voice. Those are all unfortunate things that we have become accustomed to, and we've allowed ourselves to say, yeah. That's a rule. But no. You don't have to save your dancing for only when you attend that one wedding per year or whatever it is that you go to. And even then, we don't know how to dance because we've stopped dancing. How many I don't know if it's women or men more, but I know men are very uncomfortable with dancing. They feel it's unmanly, and they don't they're not rhythmic because they've they've beaten it out of the themselves since the age of nine. But every baby, there are things that babies know how to do perfectly. I and we could talk technically. They know how to breathe perfectly. They all breathe into their diaphragm, not into their chest. They all dance, and they all sing. They're perfect. We as adults make them imperfect as we go because we subject them to this world that we live in with inhibitions, judgments, and no, don't do that. And we become those adults. Right? We all of a sudden, adults don't know how to dance. They don't know how to sing. They don't know how to they think eating healthy is, like, oh, it's so hard. It's not. It's actually tastier than eating bad. We cook my wife and I cook every meal at home except for maybe two a week where we go out. We cook everything, breakfast, lunch, dinner at home. And it's not a chore. It's actually we enjoy it. I actually feel like when I go to a restaurant now, I'm always disappointed, especially with the prices now. It's actually cheaper to eat healthier. It tastes better. You just have to wanna do it. You have to reprogram your body. Dance, laugh, drink coffee, make good food. It's okay. A glass of wine is not killing you. All of those things are okay. Just and smiling. I've spent this entire podcast watching you smile, which is a great thing. It's okay to enjoy what you do for a living too, by the way. It's not, my job. That's America. I gotta work for the weekend. And then the weekend, I abuse myself for two days, and then I go back to work on Monday. It's a really it's a cycle that we've gotten ourselves into. We don't enjoy our jobs. We don't enjoy our foods. We like, it's just this whole thing. It's a reprogramming. So, yes, dance and sing all the time. Beautiful. And I I just wanna summarize a little bit. Our music starts in our mother's womb. Then we have that heartbeat, which is our music to our ears. Pregnant woman has got two beats in one single body. So that's where the transition and transformation starts in people's lives, bringing into the world a baby, a child, and then resetting the whole sort of the scenery of the what is family now Yep. And then making food together as a family and being connected and socially activated with the purpose and goal and never losing the curiosity. We lose the curiosity of our life. We we feel lost. We're no longer interested in day to day sort of activities. And if you can't sing, if you've really feel like you can't sing, talk to yourself. Talk to your best friend, and that could be replacing your talking therapy with a psychologist. I'm not talking about the severe depression and No. But you the the smartest person in the room is you that could listen. Once your voice over your thought, it becomes so clear that and you can solve so many problems. And dancing, as you said, dancing is in my family. So my brother is a professional ballroom dancer. He runs his own school, and it's in our family. We have, like, Christmas, Easter, holidays, etcetera. We all dance. And my dad, he bless him. So I lost my mother a couple years ago, and there was a quite a grief and transition for all of us. And I never thought my dad is gonna start dancing. He's 70, and he's gone to the Sunday dancing class, Sunday live music, and he meets other, I don't know, historical classmates. And he just enjoys that. And what I'm trying to say, it's never too late. And his lifestyle wasn't the greatest. He was smoking. He was living sedentary lifestyle, but this shift and loss brought his intentions or brought this kind of why he needs to do this now. Yeah. So I think what from the science perspective, what I would like to add that dancing, music, it increases the neuroplasticity. The neuroplasticity is is rewiring of our brain, producing new synapses, which is our connection between one neuron to another neuron. So even if you lost the function living with a chronic condition such as MS, you may be paralyzed on one or another side or maybe lost your leg function. The benefit here, listening to the music, imagining things, visualizing. And if you can move, please do move because you're improving your brain function. Again, this is science based. It's not like what I think, but it's real. It's definitive. And I wanna add to that too. And when we talk about music, it's specifically the rhythm. Right? Our body responds to those rhythms, the frequencies because of as you said, when we go back to the heartbeat, there's a reason why dance music back when it started. If we, I'll make you laugh now if you want. Dance music had that that's a heartbeat. That's what we hear. Why we all of a sudden feel like the need to move to it is because it reminds us of our moms. It's our heartbeat. And music, I know you have it. I have it. Whenever I hear a song from ten years, fifteen years, it takes you back. It activates the memory of a time of how you were, where you were, who you were with, all of those things. So those two things, rhythm and the memory of it, are what help the MS patients. And I watched the patient I watched a piece of a doctor who sang to his patient songs that the patient would have remembered from their time period, and that patient went from not walking at all to walking. And I'm not I saw it happening. It was unbelievable. So it is it does work. I know you have the science behind it. I actually only have the visual of it, and I could tell you it works. So, yes, it's the rhythm side of things and the memory that it brings back for you. So just wanted to add that before. Yeah. And it always enhances your well-being. Always. It makes you it brings you back to being a child. You don't laugh more than you do when you dance. It just feels good. Your body's not used to it. And you sometimes you feel silly and you look at somebody else and they look silly, and then they start doing the what happens at weddings, they start doing the crazy dances that aren't really dances. They're more like cheerleading things, and you laugh at that. And then you're all of a sudden, there's 12 girls in a circle all singing a song that they haven't sang for twenty years, and then men do it and take off their ties, and that's being children. And that's okay. That's okay. With this episode, we only could just advise people to revisit you, who you are, what do you do, what do you like to do, and what limitations, what barriers and burdens do you put consciously or subconsciously on yourself to live fully with various different flavors and senses in your life to feel good about yourself and don't limit yourself. We have so many limitation from outside world. And if we start putting that sort of limitation on ourselves, we are really hard on ourselves. And then that causes various different physical restriction, mental health problems. These kind of things happen, bringing awareness to your current situation, what's surrounding, what relationships do you form, because all that matters. As I mentioned in previous episodes, that Howard study says that the life decent life that we live and makes us happy is our relationship and friendship. So let's start with this and then bring a bit of a few spices of the kindness, attention that we share our attention with others or we get attention from others. And that makes our lives really decent, smart, clever. And just to wrap up this incredible episode with the amazing Frank, what a journey. We started with olive oil and talking about the living longer, living well, And then we ended up with the rest of the Blue Man Group and all their produced nominated shows that you inspired us, as well as you're planning to do more shows on Journey on on the olive oil as well as maybe coffee beets as well, who knows? But then it inspires us to live long, live well, live with purpose. That's our agenda. Have a purpose. And Frank also reminded us that storytelling is more than entertainment. It's a powerful bridge between science, lifestyle, and hope. Whether you are living with MS or any other chronic condition, maybe you are just simply seeking to improve your well-being. And this message is clear. Your story matters, and it's never too late to reinvent how you live. So any final words, Frank, to tell people who are maybe being diagnosed with MS, who may have symptoms but never received a diagnosis, but they really like to hear from the the number see like you who's got loads of experience. I think that you hit most of it on the head there. I just think that one of the things that you when you're talking, I'm listening, and I'm going, everything you are mentioning costs nothing. Just have fun. But, yes, get back into who you are and understand that being healthy, taking care of yourself, having fun, it's not a chore. It's actually the way to live better. And so none of that costs anything. To laugh, to get together with friends, to dance, to listen to music, all of that is pretty affordable. It's so there's a lot of stress in our world that's always triggered by work and disease. And the only thing you can do is make your work happier and avoid disease. And if you can do those two things, the rest of the stuff goes away. And so I I really do wanna urge everybody, just have fun. Have more fun. Life is supposed to be that. Surround yourself with people that are fun and also better than you and learn and be curious about that. We are sedentary beings, like you said, and we tend to stick with our own little circles. And it's sometimes you have to jump out of that circle and be a kid again, explore. So that's my last advice. I don't have anything else. Wonderful. It cannot be better. So thank you for your time. Thank you for wisdom and the light, on our Be Well with MS community. If you like this episode, please share, leave the comments, review. Don't forget to check out Living Long Gap, Living Well on PBS or YouTube, and there are some new episodes that coming and hosted by Frank. So follow Frank. He's on media. I found him so excited. And he responded to me, and he makes his time. And, it's amazing. I feel lucky at the moment. So, yes, as always, stay kind to your brain, nourish your body, and keep moving forward. Until next time. Bye for now. Bye, Kiafank. Thank you. It was great. Really appreciate it. That was really fun.
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Show Host and Founder
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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