Jeff Alex (3:55)

What's your interest in self management?

Dr. Agnes Strauchiena (3:58)

I believe that we as doctors, when we see patients we have to provide that confidence to take active role in their care. And I think if people living with Ms. Just rely on the doctors and doctors appointments it can be very disappointing because we are not present on the weekly, monthly and sometimes yearly basis we are quite distant from the patients and in particular in the current environment when people have difficulties getting appointments. So it gives an opportunity people to think about themselves, to get more resilience if things change. Whether people with Ms. Are experiencing relapses or they notice changes like progression of ms, they are equipped with the relevant tools to implement these tools into day to day living to help them to improve their outcomes. Understanding Ms. And that knowledge of what is Ms. And how to manage stress and how to eat well and be active and sleep better really nourishes everyone's brain. Living with a chronic condition such as Ms. And I think these everyday things can make a real difference if you know how to self help. As you know lifestyle is not a cure. There isn't a cure in Ms. Although there are some adverts on on media and forums that herbs can solve the issues in cure Ms. This is so wrong. But people can feel stronger, can feel more withstanding the storms that comes into their lives when they feel like they can't control, they get that grip of control and improve their quality of life.

Jeff Alex (5:43)

So you would say there for everyone with Ms. They should look into lifestyle factors to improve their quality of life.

Dr. Agnes Strauchiena (5:49)

Absolutely. I think this is one thing in their lives that they could do is to self manage and pursue the path that really is going to nourish their bodies, their brains, their hearts, their spirits and will improve as a consequence the well being and the whole quality of life.

Jeff Alex (6:11)

So we mentioned a couple of tools you created. So digital tools to help people self manage. So I'd like you to tell us about those but also if you know that there are comparable tools outside of the UK because this is a global audience. So. So what are the tools you've created and are there alternatives?

Dr. Agnes Strauchiena (6:31)

Yeah, so I've been involved in co creation and co designing a few tools. So the patient led tools that we have designed with HCI company Healthcare Innovations is, is an app Connect plus app which allows people to look for relevant information about Ms. And in particular it's very important when you're just newly diagnosed. So we listed in the video content what to expect within six months because that's the most vulnerable period of time when people are being told and left to wait for one investigation another. They feel really lost in a limbo situation. So that little kit gives them information and, and they can also tune in and listen to some podcasts by this app. Self refer to other subspecialties like occupational therapists, physiotherapists, psychology services, get some posters and infographics around the vaccination that was very important and relevant in pandemic. So it's a given tool. And then there is another tool that we have co created with PKB team. We call this Ms. Patient Knows Patients Know Best. It's a self management platform where people can record their symptoms, track their symptoms, access the lab results, track their performance, link in their Fitbit devices and communicate with the healthcare providers. Whether it's a nurse or consultant or Ms. Coordinator, it really shows how this tool can improve the patient's outcomes. When we look at the scores of the disability and function living people with ms, people who are PKB users, they have lower score that indicates that their function is much, much better in contrast to people who, who's got more disability. So I think it's, it's important to emphasize that self management can be digital management and you can get a lot of health if you track your symptoms. And to answer your question about the other tools available, there are so many different apps, you know, you just name it. A couple that cross my mind is my Ms. Companion Symptom tracker. I think it's called Can't Remember Ms. Track. Something like that. We, you know there are so many different available apps to download to to record your day to day performance and, and that usually helps to identify the triggers. You can be very innovative with these tools. But simple notes taking on your smartphone or journaling your symptoms is Equivalent as the digital tools. It's just the enhancement of your awareness of what's going on in your body and in your life and what are the potential correlation and synergy between your life and your body and are there any areas that you could tackle to improve these experiences in your day to day life? Without paying attention, without bringing awareness of these symptoms or worsening of your symptoms, it's difficult to then come to the conclusion and find the solution. If you don't know what is causing, you know why, why you feel the way you feel. And quite often people are very fatigued with Ms. And they come to the clinics, we have discussion and we find that insomnia is the potential trigger of the fatigue. People sometimes struggle to identify the issues of the, what are the potential causes of, of fatigue. But if they sit down and list all these symptoms and potentially what they've done the day before, how they slept at nighttime, they then start seeing the patterns, which is so important.

Jeff Alex (10:12)

Living with ms, that's very good points I think, I think because we have so many different symptoms, we just think, oh, it's just ms, but that doesn't mean it's just a blanket. We have to just accept it because actually it can. You know, if it's a physical symptom, sometimes there are ways to deal with it. And it could be that you, your shoes were wrong or it could be that you were having a stressful thing in your life or. And so I think we're more sensitive to things maybe like that because stress.

Dr. Agnes Strauchiena (10:39)

Could be a primary cause. You have a bad day and you know, and then your symptoms worsen. Or maybe stress is a secondary compound coming from how you feel. Like if you have a lot of pain, you feel distressed and you can't find your way how to sit down or lay down or rest. That's a secondary component, you know, that comes out of your being or you know how you feel on that particular day. So exactly the same with insomnia. You know, you may feel anxious and stressed and you're, that's why you're not sleeping or maybe your symptoms are keeping you awake, such as spasticity, pain and cramping, you know. So I think working with your healthcare providers and team is important to find this sort of balance and investigate these, as I mentioned, patterns. You know, that all these symptoms can be addressed and can be managed. There's nothing that we can't do that there are so many ways. I don't offer that only lifestyle is, is, is going to replace everything. But no, it's a, it's a multidisciplinary approach in managing Ms. Symptoms and managing disease activity. So there are different pathways and, and you know, it depends which, which symptom, which problem is dominant. You know, sometimes when we have only 15 minutes conversation in our clinics because of the lack of time or something else that we need to discuss. So, so some other emergencies arrive and we sort of COVID that and then we only have like 15 minutes left. And I quite often say to my patients, okay, tell me top three symptoms that you would like to get some help. You know, and I, in a way you have to be prepared for this type of consultation because I'm almost like putting people, you know, on the stage, on the spot and saying, oh, can you now summarize your. And I guess that's another reason why preparation, journaling, being record of your symptoms, it almost like helps you to prepare for the clinical consultations because when you come and the consultant is busy with all the other relevant, you know, clinical situations where their DMT failure, the side effects, the new changes on MRI scans, so their main focus is, is to preserve the brain health. But then symptoms may be put aside for a period of time because there are some priorities in managing the health care for patients living with Ms. So but then, you know, listing them and getting them scored in a way, you know, giving a top three.

Jeff Alex (13:12)

Yeah.

Dr. Agnes Strauchiena (13:12)

Scoring system which would really help clinicians to focus on that too. During these kind of challenging conversations that we all have in our clinics and whether from the patient's perspective and from the physician perspective, we, we both work as partners and we both worry about your situation. But if we have a structure, segmented plan, it really gives us a lot of structured, robust, smart management strategies to improve the well being and quality of.

Jeff Alex (13:45)

Life that then you can say these are my top three things and you've written them because otherwise you sometimes get distracted because you'll start on number one and actually that will remind you of something different and before you know it you've, you've not covered number three. And, but if you actually have a list when you go in and say, well yeah, this was the top three things I wanted to talk about, they know then what your focus is.

Dr. Agnes Strauchiena (14:05)

Yeah, yeah, it's difficult to solve all the problems and I guess hence these digital tools that allows us to connect and communicate with people, you know, out of the clinics, I think that's another way of keep keeping that dialogue and conversation going. Otherwise it's challenging if you, if you don't have that sort of access to, to people, you know, because we, we wish we could see our patients every day, but there is no capacity to do that. So how can we then connect? How can we build that relationship? You know, if you look at your life, you know, when you are making relationship with friends and family, you keep buzzing, you keep checking on people, you know, so exactly the same with the, you know, with a healthcare provider and the relationship with the patients that we form, they, they are formal, official. Obviously we are not getting into details, into their personal lives, but you know, if it is disease related, we want to know every detail and how can we sort of keep that conversation going? So a lot of things needs to be done out of the clinic door.

Jeff Alex (15:06)

You know, there was one other tool which might be in trial, I'm not sure, but that I'm aware of, which is the augmented reality motor function assessment in Ms. So she tells you, is that, is that China or is that gone life?

Dr. Agnes Strauchiena (15:18)

It's, it's still, we're still researching. So I am interested in wellness and healthy living, but my other part of my work and size that I'm very much deeply interested is digital technology. And I've been working in this space for the last 14 years and now started talking about this more often because I have something to share. Where before it was just more investigations contemplating developing databases that can provide us real world data and that we could assess that data and make meaningful outcomes and research questions, you know, so that we could build based on the real world database and to create that it takes a lot of time, it exceeds all your budget and time frame. That's the usual role. So these days I'm focused on working with sensors that allows me to investigate people remotely. When we are talking about the augmented reality tool that the goggles, the glasses that we use at patients home, we are investigating that in the lab just to get the meaningful sense whether this is feasible and can be used at patient's home alongside, we also utilize the augmented reality glasses to assess people at patients homes. So we send a nurse that we work with to patients home and then I sit in the office and I assess people from 360, I have to say, because it's a bit different experience than just looking at people on the plain screen, on the computer. With the glasses you have vision of the, of the environment, where they live, how they cope, how can they mobilize, whether they have all their plans, appliances to mobilize in their own houses, whether they can have shower safely. So it's been projected by these glasses to me As a consultant neurologist and I'm very very curious to learn about the patients in their lives and that helps me to navigate better and manage them better. Refer to the specialist if I see there is a problem. So these days I feel sometimes I am at patients home almost it feels like they are going to offer me a cup of tea or coffee because I can see their home environment. It's. It's really immersive experience and I really enjoy doing this. And currently we work with Exeter University. We just finalized the recruitment for technical validation study. We call this Parama study. It's patient closer to patient's home, accessing the motor function fatigue in the upper and lower limbs, balance coordination and eye tracking activities. And there is another group of researchers that work within next to universities using the wearable by a sensor to assess the patient motor functions. So and we're looking to expand our projects and adding new tools to help us to go beyond the EDSS assessment which is one of the tools that we use day to day in our Ms. Clinics. It's expanded disability score that we assess people neurologically and we give a score so. So from six and above people are severely disabled. Below people have neurological symptoms and signs and and minor deviation from the norm is around 123124 of EDSS. But this kind of tool is lacking sensitivity to identify some minor fluctuations as well as it doesn't give you a good understanding of the cognitive function, bladder, bowel function, balance problems. So these kind of things are real and we are using this tool which doesn't bring any value. So we have to think how can we best utilize the current environment in digital technology. And currently we have AI and ML and machine learning learning devices which could potentially summarize and identify the patterns for us and give some prediction modeling in terms of individual cases or as a whole cohort of patients. It helps us to make more robust smart management plans. It helps us to personalize patient journey and we call this precision medicine.

Jeff Alex (19:24)

So another thing I wanted to ask you, you've mentioned self management and how does self management intersect with traditional care? And if people want to talk to their neurologist about this, how would they talk to their doctors about lifestyle choices?

Dr. Agnes Strauchiena (19:38)

I guess every single person is individual person with their goals, agendas, their communication skills, their history, their disease, their performance and different services. They have different tools within the services how they assist people with Ms. Some are basic, they're run by general neurologists who may not have a deep interest in Ms. And they just provide the consultation Neurological assessment and give some plan management, some services in neuroscience, big hospitals, they provide more comprehensive reviews and they introduce the various different tools and apps we're talking about in the US and some places in Europe. I think to answer that question, how people should communicate about the lifestyle, I think it's a bi directional communication. Sometimes it's difficult to initiate these, these conversations if there are some other underlying issues in this particular person, you know. So when you look at the Ms. And Ms. Management and the consultations, what are they like? Maybe we should start to talk about this depends on the people's journey living with Ms. If somebody is in the deep crisis with multiple lesions within the brain, the, with multiple relapses, they are failing on the high potency drugs and we are considering to sequence from one high potency to another. So the conversation is completely different. So lifestyle doesn't become a priority. Although in our minds we know this plays a key role in Ms. Management. So I think it needs to be the right time and the right conditions and places and it needs to be an open, honest conversation. And if there are people who are very serious about the general health, minimizing risk of comorbidities, preventing from having progression of ms, they all is one already doing various different wellness approaches to help themselves. The most worrying is that people who are a little bit in denial as we call and, or they are depressed and anxious and they are, they don't know how to implement these steps. And I think this is where you need some leading consultant or a nurse or any other healthcare provider who could identify that vulnerable person who lives with Ms. With a chronic condition and who's got multiple comorbidities. That's the responsibility of the healthcare provider to open that conversation and say we can help you to certain degree, but then the rest of the depends on you, whether you're going to engage with the physiotherapy, whether you're going to attend the rehab sessions. So it's, it's, it's creating that confidence, trust and partnership at the end of the day and finding the right time to discuss these issues. There are so many platforms now, these days talking about the healthy, living, healthy lifestyle and I think everyone knows what, what is it and, and perhaps a lot of people know how to look and into the deep sort of tools, deeper tools that they could identify to help to improve their function and give up smoking and how to calm their nerves. They all know what to do these days. I think we learned these lessons from the pandemic, you know, from COVID people who had loads of comorbidities and they had already very bad health, obviously the outcome was very poor for these people and some blatal cases. So I think, again, I think what, what I would like to emphasize that finding that dialogue and assessing the readiness whether people would like to have this conversation. If they don't, you reassess that later on and then if people require some more detailed personalized plans towards the healthy living, healthy lifestyle. So I think opening and asking healthcare providers, we all are educated, you know about things, maybe there are some lack of knowledge in terms of, you know, what sort of how many kilocalories per day patients should consume for certain body weight and how, how much of the protein should they consume. So if we go into that detail, so we work with subspecialties like dietitians, physiotherapists, you know, psychologists and we can always refer or services, big services in uk, US and elsewhere, they allow people to self refer to their subspecialties. So, so making that way and thinking about, well, okay, you sit down and you have a cup of tea and you think, okay, what would make my life better? You know, you have to have that initial conversation with yourself and don't expect that somebody else is going to do that on your behalf. You know, I think you have to think about, you are maybe you know, one out of 800 patients for that individual. You know, the doctor that you're seeing clearly this Dr. Onaeus is not going to strategize and think about all the logistics. But if you add a bit of a, your intentions and show some interest in helping yourself. So I think step by step you will find your way how to improve your life. Or maybe you're already on this kind of healthy pathway and you're so disappointed because you just gave up smoking and you exercise and you eat healthy, but you haven't noticed any improvement as yet. Again, these things are very slow. You don't need to move fast to move forward. You can move slow. And I think with wellness and lifestyle, you know, it's not an instant effect. It's not that people would immediately, the following day, once they gave up smoking and, and started sleeping well, they improve. It's a long journey. But your body, your brain is going to say thank you because you know, we are talking about the decades of living with Ms. It's not a disease that is quick and, and you know, and rapidly progressive. No, it's a disease that is very slow and very disabling. If, if people are not too Careful. If people are not taking disease modifying therapies, if they are not living healthy, the rapidness of the progression is much, much quicker. In contrast to people who actually do all the right things. Disease modifying therapies, exercises, building the resilience, socializing, connecting with other people, practicing mindfulness meditation, knowing how to manage the stress stresses every day for everyone. Nobody's defensed and protected from that, but knowing how to respond to their stress stimulus is the art and that comes within time. It doesn't come over the night as we know.

Jeff Alex (26:34)

So you have your own podcast, Be well with Ms. So why did you start that and want to connect more with the wider public?

Dr. Agnes Strauchiena (26:43)

The podcast has become a way to reach people who may never step into my clinic, but they still need a support. And I wanted to have more open, honest conversations about living with ms, not just, not just from a doctor's perspective that I know everything and you just listen to me, I'm going to tell you what to do. I wanted that sort of real people stories and I wanted to bring the healthcare providers into that conversation each time. Now they come to the Be well with Ms. Podcast. They were very well prepared. They bring metaphors, they bring models of new care science, they merge that science with the day to day tips and tricks. I think there is a lot of fear and a lot of confusion around the Ms. Disease and I just wanted to create some, something that felt human, felt hopeful, that it's useful and it's evidence based knowledge that is shared during the conversations that I provide and record.

Jeff Alex (27:46)

And what are some of your favorite episodes or your favorite guests?

Dr. Agnes Strauchiena (27:49)

And I think one of the episodes that I have recorded recently, it's with Frank Lickery who is an actor, a producer, a director who's now producing one of the TV shows World of Olive Oils. So and we ended up in discussing the health benefits of extra virgin olive oil. And one single olive tree can produce maybe two bottles and it's quite expensive oil if it is a high quality. And we had such a beautiful conversation. I highly recommend to, to go and listen to that episode Secrets to Living Longer and well with Ms. It's one of my favorite episodes and that's the latest one. And that led me, led me to go and visit Italy and Tuscany where they produce high quality of the oils. And I attended the teaching training course how to Taste the Olive Oil and had a showcase of the mill of the olives and how the actual oil is being produced. It's really the elixir of our lives and that's coming from the blue zones. You know, people who live in Greece, Italy, some areas in America, Japan, why they live so long. They all consume very good quality of olive oil. So that's something to remember. And it's the episode about the wellness and how some nations and cultures are living so many years and they are still healthy and shepherd in the mountains 100 years. When you see that, you can't believe but this is true. And then you really want to pursue a similar lifestyle which is not necessarily going to the gym. You know, if you don't like to go to gym, you don't go to gym. You just go for a walk in the nature. So all these kind of conversations that I had, just to mention another episode I really enjoyed. Again it's about the weight management with an expert GP doctor from Canada who, who educates us about the women's chronic condition and weight management. There are so many beautiful things. I, I also met with Professor Pluchino who talks about this stem, stem cell treatment to, to improve the mitochondrial function to regenerate the nerves. And I actually gone and visited his lab where they do the great job in Cambridge. So yeah, so, so the conversation continues, although it's just a one one off recording that you do with people that you invite as a guest speakers. But that continues before the show and after the show and I go and visit and meet them and we have conversations that are deep, that are oriented to improve people's lives, that are innovative, that they are discovering something new or giving a lot of wellness.

Jeff Alex (30:37)

And from all that information you have and your work, what's the latest research telling us about lifestyle factors and brain health and specifically ms?

Dr. Agnes Strauchiena (30:48)

There are loads of going on around Ms. And brain health and healthy living. There are studies that conducted studies that investigate the candidates who adhere to higher quality diets, usually Mediterranean diets, ketogenic diets, intermittent fasting and in particular as recent studies emphasizes plant based food that reduced meat for example intake can reduce the progression of the disability, lowers incidence of depression and anxiety and alleviates the inflammatory processes within the brain. And it's, it's a hallmark of Ms. Pathology supporting the the notion of nutrition that it plays a key role in. In symptom management in Ms. In particular. And some studies suggest that it could slow down the progression. Also some critical studies such as looking at the psychological well being as integral in to managing multiple sclerosis so programs aim to enhance the sense of the coherence among the patients have shown promising results. Improving the quality of life, diminishing prevalence of depression and anxiety. It helps to make informed decisions and choices about the health behaviors and sort of improves the diet and physical activity. And the other studies in Ms. And focused on wellness is how can we prevent Ms. From developing? And again the interplay of the genetics, environmental and lifestyle factors in Ms. Susceptibility has also gained attention. And researchers emphasize the importance of the understanding these dynamics and developing preventative strategies from getting Ms. In this world. So I think overall, in conclusion, the latest research is very, very promising. And it underscores that healthy living improves their dietary habits, regular activity and exercises and psychological support can significantly affect the quality of life and improve the outcomes for people living with Ms. And I think future studies are needed. As always, we want to dig deeper and understand the specific lifestyle measures and interventions for long term effect on disease progression in particular.

Jeff Alex (33:07)

So a lot of the news and research and everything we hear is of people with relapse remitting Ms. Because that's the most common. But for people with Progressive Ms. Where DMTs are limited and potentially not available, not working, what's the latest research advice for them?

Dr. Agnes Strauchiena (33:29)

Okay, so when people stop their disease modifying therapies and they're, they become in a very advanced stage of the disease and Most likely progressive Ms. Stopping DMTs or getting very rapid decline in their function and, and they remain in that sort of stage of the disease, it's not the end of care plan. It's something that is a beginning of something very exciting and new. I think it's a pivot point because you know, as we discuss all these interventions like lifestyle, all the, it's, it's very, very important. So I think people still need to focus on good diet, good quality of diet exercises. Rehabilitation is very, very important. For example, advanced forms of ms, they have severe spasticity issues to the extent that their limb becomes flexed all the time. And if you're not too careful and if you're not doing some passive movements and not working alongside with your carer or family member on that particularly affected limb, it becomes really difficult to care because there are some contractures and stiffening of the fibers that connect the muscle to the bone. And then people remain in that fixed position. And if you delay that process of the movement and stretching exercises, so it becomes really then hard to extend if it is a year later of not moving that paralyzed limb. So it's a lot of to do. And still I think connection and social life, you know, calling a friend and having these conversations and having mental states, stimulus and stimulation is something that people could still focus. So it's not the end game. It's it's something new, a new path that people should immerse themselves and experience the real Ms. But don't think that you are now left alone and you're the only one that can't get any help. No, no longer. DMT is, it is one way of managing Ms. And there are so many other domains and focus of areas that you could get a lot of help. But again it's making that contact, connecting with a healthcare provider, having that open, honest conversation listing your symptoms, focusing on what which three top three are causing more disability and problems for day to day care and day to day living.

Jeff Alex (35:49)

And what does the future hold, do you think? Are you optimistic about the future in terms of research?

Dr. Agnes Strauchiena (35:55)

I'm not going to specify the exact studies and research names but I think the future is bright because we are focused on Ms. Disease prevention with our research in Ms. Field. We are discussing about the EBV virus vaccination. The diagnostic criteria has been just updated in 2024. We are now able to diagnose people who are not having symptoms of ms, but they already have changes on MRI scan, the advancement of the biomarkers helping us to identify disease earlier and also identify who are at most risk and I guess having advanced MRI softwares which helps us to look at the lesions, look at the brain volume and then, and then moving forward, if we are introducing these digital wearable biosensors, it helps to identify people who are at most risk and at very early stage of the disease that we could then intervene with appropriate management, whether it's to do with a symptom management or changing their disease modifying therapies. Yeah. So I think the future is here to some extent, but some exciting things are also coming in the next decade or so.

Jeff Alex (37:15)

So as a last point, I'd just like to encourage everyone to check out the show notes and have a look at Agnes podcast because it is very informative. You have some excellent guests. There are, there is some crossover. We do have some of the same guests obviously, but yes, they're very good episodes and I'd like to thank you very much for joining us.

Dr. Agnes Strauchiena (37:32)

Agnes Strauchiena thank you so much for having me.

Regina Beach (37:36)

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share? Email us@podcastvercomingms.org we'd love to hear from you. The Living well with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.