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.
25 January, 2026 Guests Interviews and Charity events
In this episode of the BeewellwithMS Podcast, Dr. Agne Straukiene, a neurologist, discusses the concept of 'invisible illness' in Multiple Sclerosis (MS) with Amy Thompson, founder of the MS Together charity. Amy shares her daily struggles with symptoms like fatigue, pain, and brain fog, which are often invisible to others. They also explore the importance of communication, self-advocacy, and the need for empathetic understanding from society. The episode dives into the challenges of living with an invisible disability, the necessity of realistic goal-setting, and leveraging technology for support. Finally, the discussion highlights the value of creating safe, inclusive spaces for young people with MS to connect and share their experiences.
Welcome to Be Well with Emmett, a space where we talk honestly about living with multiple sclerosis, beyond MRI scans, clinical events, relapses, and what's visible in the outside world. I am doctor Agnes Storghiena, neurologist, and the first of Be Well with MS podcast. Today, we are talking about something many people with MS live with every single day, invisibility. And this is often described as invisible disease. You can look well, even be told you're doing great. Everything is fine. You're fine. Whilst quietly managing fatigue, pain, tingling, brain fog, uncertainty, and sometimes loss. Today, I'm joined by Amy Thompson, the founder of MS Together charity supporting young people living with MS. With lived experience of MS, Amy's deeply passionate about reducing isolation, changing misconception around invisible illnesses, and creating safe, inclusive spaces for connection and support. So welcome to this episode, Amy. Thank you so much. Very happy to be here. How are you today? I'm really good. Thank you. Yeah. All good. Amy, if MS were visible on the outside and people actually can start seeing what's going on, what do you think they would finally understand about your day to day living with MS? Yeah. So I think people would definitely understand MS a lot better if they could see it. I think they would understand that every day involves a lot of calculation and adaptation. And I think, for example, I wake up every day and I evaluate for one feeling, so how much energy I have, what I need to do that day, whether I'll have enough energy to do it. And I always say that I compare it to is if someone has, for example, a broken leg, people immediately understand the limits that they have and the frustration or pain that they might be feeling. But with MS and lots of other invisible conditions, it's just not that simple. And I think even though MS can be visible for some people, the fact that MS affects everyone so differently, it just makes it so much harder for people to understand what you're actually going through. And I think for me, it's just, like I said before, the kind of constant management. So pacing yourself, adapting, planning rest, and listening to your body when you need to. And just the uncertainty around living with MS as well and just not knowing how you feel from one day to the next. So I think, yeah, people would just understand that, yes, sometimes I can push through and I can do all the things I want to do, but other days, there is a lot going on beneath the surface, and that's always shifting as well. I think if people could see that, there would be a much better understanding of what people go through. I believe that maybe, Amy, that would build an empathy. Yeah. Better understanding of the nature. Living with this chronic condition that you're describing really captures that something is hidden and no one thing can be seen, and it shapes, like, every day's decision. There are days that perhaps it limits you if it is a severe fatigue and people look as you're you're making gliders, your hair is nicely done, you're glowing in your skin, you just done your marathon, you run five k. But then two days later, you maybe want to spend some time on the sofa because there is an exhaustion that is part of the of illness and disease. And if people could see all these kind of different colors and if these kind of symptoms could lighter color, it's like amber, green, or red, and it's a a it would be a cue for people to okay. She she needs some rest. She needs some good time to pamper herself and spend some time doing nothing, maybe. And that could give a better people confidence in communicating with you adequately by using their empathy and without causing you an anxiety and fear of things that you can't do at the time because of the lack of energy. And then people could stay away from you and then come back when they see this kind of green light when you are, like, fully energetic. But I think, Amy, it's a language, isn't it? You need to be more communicative. You need to express yourself often because what's not visible then how do you how do you communicate? How do you explain things? And building that kind of connection with other people that they could find you whether it's a facial expression or certain things that you start doing at home that indicates to other people and family members that you're really now exhausted and you will need some time. So do you have any sort of tips like how how is your partner noticing that he needs to stay away and give you some space? Or are there any sort of recommendations for people day to day? I think it is just pretty much what you've said. It's around communication. And I think to begin with, I wasn't that good at doing that, and I I didn't communicate my needs. But I think that is the only way that you'll get the support that you need because I understand that one day I'm able to run a marathon and the next day I might not be able to do anything. I understand that it's very difficult for someone to understand and comprehend. So I think that is where you have to advocate for yourself, speak up when you do need those, when you do need that rest. Take the time to rest. And then I think, yeah, communication is one thing, but then I think your loved ones, the more you do communicate how you're feeling, the more they then might pick up on those kind of subtle cues and signs that might mean that you need a bit more time or space or rest. So yeah. Because there is a constant need to explain, justify, prove that you are struggling with invisible disease, isn't it? This is is never ending. And it may feel exhausting activity because people come at you and say, hey, you look well. Have you ever felt painful and in invalidating rather than reassuring when people come and tell you, you're fine. Nothing is wrong with you. Like, how does that feel? Yeah. I think definitely in the beginning. So when I first got diagnosed and I first started telling people that I had MS, I was constantly met with comments like, you don't look ill. You look so well, and, like, a lot of confusion around that as well, which, again, I do completely understand. Amy, I'm just thinking nobody has got any bad intentions by saying that. They all feel like they're gonna uplift your spirits and say, hey, but you're you're nice. You're everything is so good. So I think that could be such a well intended phrase, yet it can land very differently when you're living inside the body that it doesn't feel comfortable on occasion. So I guess, again, maybe some implementing some sort of acceptance steps. I don't know. Cognitive behavior therapy, would that help? And acceptance therapy, okay, This is gonna happen to me more often because people potentially have no intentions for me to hurt each time I hear these words to me. Maybe taking it gently and and observing from other person's perspective and saying, hey, looking at the whole thing for more neutral, trying not to take that personally as a and you know what you're doing to help yourself anyway to feel better. And maybe gently reminding whilst you're hearing these kind of hurtful words to you that you're internally inside your you use your own voice and say, yeah, people. You should know better. But, obviously, don't say that to other people because that would be classed rude, in particular in The UK. Okay. That would be rude. So just listen, nod if you can, but have your own sort of strategies in place when you each time hear that kind of conversation because it it it can be overwhelming and emotionally upsetting. But if you have a nice strategy, psychological strategy in place like cognitive behavior therapy, CBT, or ACT acceptance therapy of the your situation and having some sort of kind words to yourself at the time when it happens. It may really help you to move throughout the day without dwelling too much what you just heard about yourself. Would you agree, Amy, that some sort of internal trash do you talk to yourself? I I spoke yeah. I guess I I have over the years when that conversation does come up. But I think the other thing is as I've gone through my LS journey and as I've got more confident in kind of talking about the condition and as I've learned more about the condition as well, I think it's pushed me in the other way to almost challenge those assumptions in a kind way. But it's almost an opportunity to open up conversations around invisible illness and, you know, educate people on the fact that, yes, I might look well, but I'm still managing these symptoms. And I think just having those conversations is what can hopefully just educate people more about the condition in general and then hopefully mean that they say less of those things. But, yeah, I think in the beginning, it was definitely harder to hear, but over time, I realized that it is just people not understanding, and it's always coming from a good place. Yeah. Yeah. Then my recommendation would be live your life as it is. Own your own reality. And you don't need to pay into someone's delusion. We you can think about for as a delusional thought, maybe, of someone who goes and tells you the stories of how things are, how wonderful things are. But if you are grounded, if you know your own reality and you're living what is here, now, and always, That's how you come to your own identity and who you are without any distraction and mental overwhelm. Moving on to Amy, the work and related issues. Currently, the lives we're living is ambitious. You have to prove your point. You have to achieve goals, and you have to be ambitious. You have to be productive every single day, especially in the world that is giving you rewards, visible outputs. We have a lot of going on in this world. How do you manage this? Yeah. I think it's very difficult. I would say that I'm still very ambitious. I don't think that's changed very much at all, but I am more aware of pace and boundaries that I need to put in place and the long term impacts that has as well. And I think founding a charity while living with MS hasn't been easy, but it's taught me that productivity isn't about constant output. It's more about doing what you can when you can. And over a kind of longer period, you will still get the output that you want. It just might sometimes take a bill a little bit longer. But that said, it is something that I definitely do still struggle with. And I think for the reasons that you mentioned, Dagny, I think we live in a world that revolves around output. And I think unlearning that kind of idea and being a bit easier on myself when it comes to that has been a learning curve in itself. And there are still days when, you know, taking a rest day feels uncomfortable. And I think I just then have to remind myself that it's just a whole it is it's a part of managing the condition, and and it's not a failure. It's just necessary to keep going in the longer term. So, yeah, it's something that I think is an ongoing struggle because of the world we live in, but I think it's something, again, that I've learned over time that it is so important to take that time to pace yourself, to set boundaries when you need to. And I think it does help me in the long run. Run. Yeah. Totally. What you're describing is like rewriting what the success looks like these days. And I think this rule applies to anybody, not necessarily living with MS. It's applied to me and everyone else. We have to pace and we have to slow down. We have our own lane of this kind of marathon or competition, and we're competing only with ourselves, nobody else. We choose our own battle. We choose sometimes, well, do you want to overtake maybe, or we want to take our time and slow down and not to compete at all. It's it's our conscious decision and choice. And, you know, we should all move away from constant productivity, assessing the goals, achieving in particular, I'm talking about the fixed goals that is difficult to achieve, going to gym forty five minutes a day every day type of goal. Who is gonna achieve that? I can't do this, can you? Nobody can. And get getting to this kind of more flexible goal setting, which would be, I'm moving to the right direction. I've done some exercise this week. I'm feeling okay. If I do more, I'll feel even more better. If I don't, I will be having more rest. That kind of language with ourselves, I think, shapes how we feel day to day. And I think we're moving towards more sustainability rather than productivity, which is we're not working in the factory. We can take time, and there are so many other tools to help and assist us to with the daily tasks. My patients are using some Alexa, which is going to switch on now, switch off Alexa, stay well. There is different other devices that people could use to help to increase their productivity and moving into the AI world with the writing on your behalf, setting the plan setting the plan for the traveling or journey or whatever it's maybe a visit at the hospital or preparation for visits with your nurse, etcetera, etcetera. So there's a lot to rely on. Would you agree? I mean, what do you think about the helping yourself with technology to navigate? Yeah. There's a lot of things out there that can help, and I think it is just finding what works for you and what would support you the best. But I loved what you said about goals as well, and I think it is just about being realistic and not setting yourself up for failure. There's back a few years ago, I would set myself really strict goal that I would never achieve complete because you have to be realistic and you have to realize that some days are gonna be good, some days aren't, and that's okay. So it's just about, yeah, being flexible and, yeah, just realistic, kind to yourself, and get in support from as many different places as possible because like we said, there's so many things now that can help us with so many different things. So yeah. Our brains tends to fixate on some events, some sort of stories in our minds. We're always constantly thinking about something. Our mind is busy all the time, everyone. So it's not just you that is obsessed about something, but it's just how we set ourselves, how we take our step backwards and observe these thoughts from a distance. Imagine maybe you're floating on the nice fluffy cloud, and the other clouds are your thoughts that keeps coming. But what you could choose is not to build a whole story or drama inside your mind, but let these kind of thoughts that keeps coming, they will be coming. The more you try to suppress, the more they become visible and and accessible. So try to I think my recommendation would be try to observe these kind of thoughts and without creating another story because that's how you keep your resilience and awareness in that present moment without overwhelming yourself. Amy, I would like to speak about your favorite topic that you're most passionate about is MS together. And you're doing the wonderful job throughout MS together, and you create spaces for people, young people who don't have to perform maybe that they are too well or super good. They all more or less on the same boat. They don't need to hide anything, their struggles. You have a open, honest conversation, especially with young people in their early life. So tell us a little bit your ideas around this project and charity and how people evaluate what you do and what do they find when they join MS together. Yeah. So I think that the reason behind setting up MS together was it started through my own personal journey. So it started with me getting those kind of comments like, but you don't look ill, but you look so well. And that led me to start a blog, which I named, but you don't look ill. And I just started to share my whole journey about MS from kind of start to the diagnosis to, I mean, trick choosing a treatment, to just living everyday life, to navigate in dating, to work, to so many things. And through that, I then found lots of other young people that were feeling very similar to me. And I think that then made me realize that there were lots of other young people out there that also didn't really feel like they had anyone else to speak to about the condition. I think I found lots of great support out there. There were so many amazing charities offering lots of thing, kind of different services. But what I didn't find was that age specific support and spaces for people to just, like you said, just speak to each other and have those kind of open conversations without feeling judged, without feeling that they needed to perform. And it started with just a very informal support group, and then over years, it just grew into what it is today, which is now, like you said, a charity, and we provide lots of different services. But I think the main thing and the reason why I think people don't feel like they have to perform when they come to us is because we have designed everything with people living with MS. And that means that there's a lot of flexibility. There's permission to show up exactly as you are, and we don't expect people to be positive all the time. There are lots of people that are positive all this time, but we don't expect that. We don't expect them to have to explain themselves, and there's no kind of pressure to engage in any particular way. There's lots of different ways that people can get involved from our kind of support groups to our events. And and I think in practice. It's been building kind of that flexibility into the charity. For example, with our event, people can arrive late. They can leave early. They can take breaks. They can join a virtual call, and they don't need to turn their camera on. They can just sit there and listen and take in the information. And there's just no expectation, which I think is so important in kind of creating that safe space for people. And it being as another example is in our support groups, we are very clear guidelines, then prioritize kindness and respect and mutual support. And I think it is just about creating a space that people feel safe in, and they a space where they feel like they won't be good, and they won't be pressured to present themselves in a certain way. That idea of permission not having to pretend feels incredibly powerful. And if you are age 35, is this is the limit's age? And if you're younger than 35, you are fully accepted to be part of the MS together. Is that correct, Amy? What's the Yeah. We most of our services are aimed at people aged 18 to 35 in The UK and Ireland, but we do have some services. So we've got a support helpline. We've got a newly diagnosed guide that's currently being developed, and those are all open to anyone affected by a math. So we predominantly focus on the age group because we feel like it's important for that kind of age group to have age specific support. And and, yeah, we didn't want to completely close off everything as we know that, obviously, MS affects so many people from all age groups. Yeah. It's important that we still offer some things to Wonderful. Wonderful. And how people can find you? Is it they Google MS Together, or there is a specific link that they need to follow? Yeah. So Google MS Together. We're also on social media platforms, and our bundle is MS Together official. But, yeah, you should be able to find us by Googling. And our website, it's mstogether.org as well. Okay. Wonderful. So people tune in to and listen to all these positives that we just described and find your peers that are living with MS and experiencing exactly the same, and they were numerous enough of times told that they're not good. Nothing is wrong with them. So there is a and behind the real world, there is a an alternative world that I tried to summarize in one of the recent series. You can go and listen to the latest episode and read around stranger things in MS. But what we'd like to say that, Amy, I think you're giving an opportunity and a lifeline for majority of people, and this is initiative with some psychology service and support, giving opportunity for people to be open and honest and talk to each other. We are social creatures. We have to connect and communicate with each other because it takes your mental overload when you start expressing yourself. Even if you are introvert and you want to hide yourself, exchanging a few thoughts and ideas is that's how you start feeling more sane about yourself living with this condition. And in particular, if it is invisible MS. And my last question, what's one assumption you wish clinicians, employers, and even loved ones would stop making about people living with invisible MS? I think I'm probably going to repeat myself, but I think it is just the fact that looking well doesn't always eat poor feeling well. And, yeah, just just because someone doesn't look poor doesn't look unwell doesn't mean they aren't managing symptoms or the kind of emotional weight of MS. And I think also many people with MS are capable driven and, you know, doing amazing things with their lives, but that doesn't mean that they don't need understanding flexibility and sometimes just a bit of patience. And I think just because someone is doing all those amazing things, then they might come across as, like, they're doing really well. I think just try and keep in the back of your head that there could be a lot more going on. Mhmm. And I think I also wish that there was more trust in people's self knowledge. And I think MS can affect women in so many different ways like we've talked about. But if you have assumptions about how it will affect someone and you're not really listening to them, even though they're the expert, I think, yeah, that's when misunderstandings can happen, and the support might not be there for that person. And so I think, yeah, just listening, asking, and believing is what I would say. Listening to someone's experiences and how they're feeling and how it's affecting them, asking how you can walk down and how you can help them and what's going on that day, and then believing what they're saying because I've heard so many stories from these people into people in the where they don't get believed about sentence and and not of that is because they're not visible. But I think we belong, you know, and I think the fact that MS is known as a and then with a good nips when we just need to get that forever. Believe again, he was experienced. So and I can't believe it. That's such an important reminder. Assumptions, even kind ones, can quietly cause a lot of emotional problems, sometimes harm. And although intentions are not bad, but always think about these sensitive questions or comments that you give it to people. It's just being good communicating. We should invest more time to learn how to best communicate with each other. And for that, I suggest people read books. Read books. It really helps to understand the practicality and improves our language. And what do we say? And we sometimes we need to be quiet and just listen, be present, and offer some help. That's not gonna harm anybody if you offer your help. Amy, thank you. Not just for sharing your story, but for giving language to experiences to so many people who living with this condition will recognize that. And we very rarely have a chance to reflect back when we've done already and we said things, but this is a chance for us to if you're living with MS, reflect what you had already without building these stories and dramas in your mind, just observing these kind of previous experiences and let them go as clouds. For people who never approached or never met a person living with MS, this is a learning point for you to learn how to use the language and not to expose with unnecessary comments that may be harmful and emotionally impacting and causing a lot of trouble. For carers and parents and family members, a reflection time during this recording and trying to improve. If you want to see the change or have a different outcomes each time, you need to change your language, to change what you're doing, to change your habits, whatever it matters to you. If you're listening and parts of this conversation felt familiar, please know this invisible MS does not mean mild MS. And certainly, it doesn't mean you owe anyone proof. At Be Well with MS, we believe care begins with communication, understanding. Understanding begins when we listen. If this episode resonate with you, consider sharing with someone who might need to hear all this. A friend, a colleague, a carer, a parent, maybe your clinician needs to listen to this. Until next time, be gentle with your energy. Take care of your nervous system. And remember, just because something is invisible doesn't mean it's insignificant. Take care, everyone. Thank you for joining us. Bye. Evening. Bye.
11 January, 2026 Easy Explained MS by Dr Agne Straukiene
In this episode, MS Neurologist Agne Straukiene explores the complex nature of Multiple Sclerosis (MS) using metaphors from the popular TV series Stranger Things. She explains the different 'worlds' of MS: the visible symptoms and medical findings, the subtle day-to-day changes often not captured by scans, and the deep biological processes driving the disease. The video emphasises the importance of early diagnosis, ongoing treatment, and a multidisciplinary approach including lifestyle changes for better brain health. Dr. Straukiene also discusses the role of advanced technologies in understanding and managing MS.
Hello, world. It's me, Agnes Dorgan, MS neurologist. Have you seen film which is called Stranger Things? The most popular, the most exciting in history TV series. So, I would like to explain you couple things about this TV series of Stranger Things. I want to share a way of understanding MS that many people have told me feels intuitive, reassuring, and validating, especially if you ever felt that your experience didn't quite match what your scans or tests showing. So we are going to explore MS through the idea of different worlds that exist at the same time as their Stranger Things film series. If you wish to see the TV series of Stranger Things, just go in and start watching. I promise you're gonna have a great time. That means that I'm going into that kind of I don't know what you call it. Trans status? Maybe. Yeah. So it's exciting what you could get out of the interesting, engaging movie, an interview maybe, a podcast, whatever, that attaches a new blue to the screen. So that's a next level to achieve for everyone to chill and relax and take in information that you need. So now what you need to know is that the world that we see in MS runs quietly in parallel. There are some deeper beneath the surface shapes of what we know and what is going on living with MS. So the way of thinking explained why MS can sometimes feel very confusing and people feel that there are some changes, but there's nothing on the scan. There's nothing that would suggest MS relapse. Everything seems to be stable. So it's about a world that is above and beyond the relapses or chains on the right scan. So whether you are walking, resting, driving at the moment, just taking a moment for yourself and gently explore the worlds. So let's start with the first world, the one most people are familiar with. The mess that we see, we measure, we can name it. We know what's going on. The relapses, the new MRI lesions, changes on neurology examination, maybe increasing EDSS, which is neurological disability status scale. Maybe there is a weakness. Maybe there is new balance coordination problems, numbness, sudden vision loss, optic neuritis, you name it. That enters the patients or pupils with MS life often, sometimes if they have a good control of the disease. So you can assume and see what's going on in this world following the scans, test, diagnosis, seeing the patient examining, tapping the reflexes, and doing all that nice dance in the clinical room. This world is important. It's real. It still remains. It matters. It's there. You can't ignore that. It does exist. The world that medicine historically focus on most. But we need to move away from that because there are so many things and so many layers to see. I know why it's so popular in most focus is because it fits well with how health care system work. Something happens, people call us, we issue an appointment, we see the patient, we detect, we label it, and we respond, and maybe we change the management, maybe we we prescribe new drugs, etcetera, etcetera. For many people, especially early in the disease, MS can seem to behave in this very visible event based way. Sometimes it flares up, sometimes it settles down, but life continues. But over time, many people notice that this visible picture doesn't fully explain how they feel day to day, and that's where the second world comes in. The second world represents a mass activity that runs quietly alongside the first, often without clear relapses or dramatic MRI changes. You can't see it. This world many people describe as using phrases like I'm no worse but I'm not the same. Something is going on I can't explain. Some people say I'm coping but everything takes more effort, more energy, more time, I'm a bit slower, my thinking is changing, I'm a bit more anxious about things I can't organize and multitask, etcetera, etcetera. Sometimes people say I can still do things, but not in the same way as I used to. In this world, MS may still be active, but in a slow, subtle form. Sometimes we call this a very famous word that spread across the world. It is smaller AMS. It means that there is a chronic active inflammatory process, maybe diffuse, maybe at the molecule and cell level that you can't see, but people are just getting changes in their life. There may be ongoing lower grade inflammation, expanding lesions, early spinal cord, brain cord, volume loss, atrophy, as we call, or changes that current scans don't always capture well. What's important here, and I want to say this very clearly, is that people often feel these changes before before medicine has a reliable way to measure them. And that does not mean those experiences are imagined. It's real. It's that. It's totally with you. We get you. It doesn't mean that you are being anxious or negative about the things. It means your nervous system is super complex, and our tools are still catching up, they're not quite there to identify these kind of subtle changes. The world helps to explain why someone can be told their MRI scans are not changing. They still remain stable, but people feel something is changing and is different in themselves. It's real. We accept that. So this is upside down world. And if you relate to the stranger things movie, so the world that is darker, it has got some deeper visuals, darker colors, blue tones. It's scary. It also explains why listening to lived experience is not soft extra in MS care. It's essential. It's something that we all should dive deep and and listen to that story because it's important. Okay. World number three. The dimension x, the deep drivers of the progression. This is scary world, even scarier than upside down world. The third world takes us deepest still into the biological processes that shapes long term outcomes in multiple sclerosis. There is where we talk about the gradual nerve damage, energy failure within the nerve cells, that interaction between MS and aging process. The older you are, the lessness can regenerate. The more problems, the more progression happens as you age. And the reason progression can sometimes occur without obvious relapses, these flare up of new symptoms, the progression is just going on in the background without any trigger. This world can sound frightening if it is not explained carefully, but I want to frame it differently. It's a world of better understanding. Understanding that MS is not only about the inflammatory process, it's also about how resilient the nervous system is over time. So this is where our main research is now located. We're trying to understand what drives the mechanisms of the injury, repair, regeneration, recovery, aging, longevity, wellness, holistic care, you name it. This is where concepts like brain health, movement, sleep, stress regulation, nutrition, mindfulness, meditation, and more emotional well-being matter, not as an alternative to medical treatment. As we know, disease modifying therapies are essential. The early we start disease modifying therapy, the better outcomes people do better. These are essential key elements. But then beside that, what I just mentioned about the other concerns of the lifestyle medicine is part of protecting the nervous system and improving the resilience and the capacity. When we talk about lifestyle medicine, we're not talking about blame or responsibility or this is your fault because you're obese or this is this and that. Or you feel guilty yourself that you haven't exercised this morning or you had your burger this morning. We talk about supporting their biology, nourishing the cells that would function day to day and help us to live beautiful lives and long lives and healthy lives as most important thing. This world helps explain why care continues when relapses stop, why the goal is not just quiet MS. It's to support the brain and spinal cord for long journey ahead. So the last world I would like to explain is the wormhole time connects all the worlds. Okay. What connects all of these worlds is purely time, nothing else. MS does not suddenly jump from one stage to another. You wake up with primary progressive MS or you wake up with a secondary progressive MS or you wake up with a relapsing repeating MS. The transition from one stage of the disease to another. It's very quiet, very slow, very gradual, often invisible. Small changes accumulate over years, which is why early understanding, early diagnosis, regular reviews, regular visit, regular communication, thoughtful care matters, and it matters so much. The warm hole is not a countdown. It's not a deadline. It's not something that we need to reach, like, tomorrow, if it's 05:00 or something. No. It's a reminder that what happens beneath the surface today can shape how someone feels years from now. If you are smoking, it's time to give up smoking because that will reverse all the damage that you had from the smoking tobacco. And you can feel much, much better after you stop. And you are also going to slow down the progression by five years if you give up smoking now, today. This is why monitoring continues even when the things seem calm, what when the early actions, medical, lifestyle, emotional, can make a meaningful difference. And that's why I am investing my time and energy looking at how the digital technology, how some tools, the wearables, sensors can help me to identify what's not visible, what's not seen, what people describe as there are some subtle changes. And over the time and capturing that in time, it's so important. So this is where the wormhole, the time from one stage to another, from one world to another is required to understand the processes that underlie the pathology of the MS disease. I know it's very complex, but I really gonna use a lot of visuals. And if you are listening and you would like to see the images that I'm going to use to explain these different worlds, please do watch me on YouTube or these days, Spotify video is available. So if you need to take one thing from today's episodes, let it be if your scan looks unchanged, but you feel different, that does not mean nothing is happening. If you're doing well now, it doesn't mean that care can be stopped and you don't need to see anybody and you're just gonna stay in joyful life. MS disappeared suddenly. No. It means that care needs to be still proactive. And if MS feels confusing at times, it's not a failure on your part or the health care providers. It's a reflection of how complex this condition truly is. Understanding MS existing across different worlds helps us move away from the fear towards clarity, partnership, compassion, better understanding, and maybe discovery of the new drugs, and maybe finally cure. I just wanna emphasize that your experience matters. Your observations matters. Your feelings matters. Your sensation matters. And good MS care listens to all of it and uses maybe some advanced technology to capture that. Whether it's imaging, whether it's some sense sensory captures, maybe some motion activities and recordings, anything like that, speech recognition. Now we have AI available. You can do even more. So overall, multiple sclerosis doesn't exist in just one visible layer. There is the MS we can see, relapses, scan changes, symptoms that clearly come and go. But there is also MS that runs quietly in parallel where subtle changes in balance, thinking, fatigue may appear even when tests look stable, and often leaving people feeling not worse but not the same. Beneath this lies a deeper biological world where long term processes such as nerve energy, failure, aging, gradual neurodegeneration shape future outcomes. What connects all these worlds in time? MS doesn't suddenly jump from one stage to another. It transitions slowly with small changes accumulating over years, which is why early understanding, ongoing care, and attention to both medical treatment and brain health truly matter. So thank you for being here, for listening, tuning in, trying to understand my metaphors explaining the different worlds of MS. And I've been stunned and inspired by the as I mentioned, the Netflix series, but because it's one of the most popular TV series in history. And it really got into people's minds, consciousness, subconsciously deep, and relating to that to these different worlds from this series. I think you may understand it a little bit better what is living with MS and explaining it in a simple language. So thank you for being here. Thank you for taking your time to understand MS, and we are talking about very deep marriage. In this episode, I try to do my best to bring the better day to day living experience and wrap it in the artistic scenes to explain what's going on beneath the surface in another world of what is not visible day to day. If this episode resonates with you, feel free to share, comment. The more you do this kind of activity reaches so many hearts and souls in this world, and it helps to spread across the globe. I would like to believe that, and it's going to reach many people. So if you need to revisit, come back and watch it again and listen to this episode. Until next time, don't forget to care for your brain. Be gentle. Be kind. And happy new year, twenty twenty six, to everyone. And thank you for following me online and listening. I'm so grateful for all of you, and I hope that you're gonna have a great time in 2026, if not in 2027. But be hopeful and look at things as positive as you can and reach for some help if you need it. Bye for now.
7 December, 2025 Guests Interviews and Charity events
In this episode of 'BeeWellwithMS,' host Dr. Agne Straukiene, a neurologist, welcomes Roxy Murray – a keynote speaker, patient advocate, and champion for diversity, inclusivity, and true health equity. Living with multiple sclerosis (MS) herself, Roxy discusses her journey of balancing fashion and health, detailing how adaptive fashion can empower those with disabilities. The conversation delves into practical styling tips, adaptive methods, and the necessity of an evolved fashion industry that includes and celebrates disabled bodies. Listeners will gain insights into how functional and fashionable clothing can meet the unique needs of MS patients, covering topics like the impact of MS symptoms, adaptive beauty routines, and more.
Welcome back to Be Well with MS podcast. I'm your host, Arjagnes Orkien, neurologist. The space where we bring science, lived experiences, creativity, and humanity together to support people living with MS. Today, I'm absolutely delighted and thrilled, and I would like to welcome someone whose voice has been reshaping how we think about the disability, fashion, representation, and empowerment. Roxie Murray is a keynote speaker, patient advocate, and powerful champion for diversity, inclusivity, and true health equity. Living with multiple sclerosis herself, she has devoted her career to making sure that no one in our community is unseen or unheard. With a foundation rooted in art and design, Roxy blends creativity with activism in a way that is both authentic and radically transformative. Her work amplifies the voices of people from underrepresented and marginalized backgrounds, especially those who are ethnically diverse, disabled, and LGBTQIA plus. But one of Roxy's deepest passions and the heart of today's episode in discussion is adaptive fashion. She brings a vision of style that is not only beautiful and functional but liberating. Her goal is simply yet profound to help individuals with disabilities express themselves confidently and authentically through fashion, design, and personal style. Today, we'll explore clothing and makeup and how can this become tools of empowerment. Even with the fatigue and mobility challenges and hand tremors make daily routines feel more complex, but we'll try to understand how to overcome these barriers. And we'll talk about the practical styling tips, adaptive methods, and makeup applications, and and the bigger picture, how the fashion industry can and must evolve to truly include and celebrate disabled bodies and identities. So, Roxy, it's a great honor to have you with us today, and welcome to Be Well with Endless. Thank you so much. That was an amazing introduction. I really appreciate that. And I really have to be here and to talk about this with you. It's a topic that's really close to my heart, but, also, I love what you personally do for the community and in your own practices. So I appreciate you having me on and having this conversation with me. Thank you, Roxy. So your journey is incredible, inspiring, and am eager to dive into into our discussion and learn more about transformative power of fashion and how it can be a profound tool for personal expression and empowerment and inspiration. Maybe let's get started and talk about the your advocacy work. And I know that it's deeply inspiring with your personal experience living with MS. And how has this journey shaped your approach to fashion and styling? Well, obviously, being diagnosed with MS took, like, essentially at the start of my journey. That was eighteen years ago plus actually, might be nineteen, almost twenty now. I studied fashion. I love fashion. That's, like, my number one thing. But it took a lot of my energy, and I was going through a change where I was take coming to terms with living with MS and uncurable illness. And in that time, I felt like I lost a lot of my personal style. And that was that when a lot of my personal self worth. A lot of my self worth was wrapped up in art and in fashion. And I couldn't give myself that. Like, that's thing that made me feel good day to day, I kinda lost it. So within my journey, I kind of use the feelings I was having to look at how I could find that again. Where could I find that that part of me that made up my personality? Because I didn't wanna give that up to an illness or disability that I had acquired. I still felt there had to be a way that I could live with MS, live well, and still be who I was and dress in a way that made sense to me and allowed me to feel like myself and present and beautiful in the world. While doing that, I looked at loads of different labels, like different clothing stuff that I could find. And I didn't see a lot of it at that point that really either lended to my personal style or lended to ease of dress for people with disabilities. There's a lot of clothing brands as everyone knows. There's a lot of amazing clothing brands, but not all of them, the pieces when you're having your high fatigue days with MS, are easy moments to feel stylish in a way that's not making you feel overwhelmed or taking the small amount of spoons that you have in that day. And I want to talk about it essentially. I just started being like, hey. Where's the clothes that, like, make me feel good and allow me to get dressed in the morning with ease in a way that might matter what my MS is presenting me, because, obviously, that changes day to day as you know, that I can still feel like me in those moments. And that's how I started my advocacy. That's kinda start that's what's kind of gave me that power to stop talking about it. And then I kinda landed towards my friends that also were in the fashion industry making amazing changes, and it brought me to an adaptive fashion space. I think just to to reflect, you know, how colors are influencing our perception of the world. You know? How do we feel when we are dressed up, when we have a makeup on? You know? It's it's it's a different dimension, different layers in general. You know, we we like to look good. You know? We always looking for some sort of solutions to make us feel good. You know? Sometimes women spend a lot of time buying things, and that's a burst of their dopamine, you know, a neurochemical that gives a a sort of a good feeling. So and then actually putting on things, you know, that's another sort of and if you in particular, something that really fits and makes you feel comfortable. I think it's it it really improves your quality of life, and we don't discuss clinics. And, I think such a an interesting, fascinating topic to tackle and and sort of get get into deep understanding what makes people confident, happy, and bright as the day. And maybe almost it's like, how do you set up, you know, for the rest of your day? Like, how what do you do in the mornings? Like, you know, how how do you how do you cope? And I think it's very, very insightful what you just said, and it's clear that your perspective on fashion is both unique and impactful. The way you look when we meet face to face and and see each other is always something to learn from, you know, matching certain colors, certain textures, and and and shapes of the of the, you know, clothes. And I think let's talk a little bit maybe from the perspective of the functionality and fashionable clothing. Many of our listeners are always looking for practical advice, you know, because there are some symptoms that really limits how people can prepare for the day, you know, whether that involves waking up and feeling exhausted and fatigued. Sometimes, you know, there are some tremors. There are some mobility issues. Getting and having shower is another challenge for people and then putting the makeup is sometimes is not, you know, even on on the table, you know, because it's it's difficult to look after the hygiene, even that. You know? What are their top recommendations for choosing the clothing that is not only functional, but also keeps the style high? You know? Yeah. So as for backgrounds and styling, I had to relook at, like, what I could do. What do I do in styling that could work for me in my day to day life? A lot of it was planning. So when I had, like, good days or good MS days, I would look at, like, why didn't I take that time to sit there and plan outfits that make me feel good? But they didn't just come from what was inside my house and the clothing that I already had, but it also came about relooking at what my current needs were with MS. And actually, like, what can I do on my worst day versus what I could do on my best day? So when I was lost in one of the neurological places that we go to, someone's like, oh, I really like the outfit. And I explained to them, like, this outfit, I tried to make something that was both professional, but was easy to dress for me. Because when you travel with MS, I was so very tired for the first two days. It takes me a bit of time to come back to my highest level of productivity. And I went for a stretch velvet skirt. Like, no one knew it was a stretch velvet skirt, but it was a stretch velvet skirt. But it still looked very professional. And then I also used a silk shirt. But instead of silk shirt with loads of button, I went for something that was just a wrap. So I could tie it around my own waist and then tie it into a bow. Because sometimes with my dexterity of MS or I'm having a really intense day, spasms and stuff, and also my nails, that's the style shows. But I can't do buttons as well as I'd like to. I just I don't have that energy. So it eliminates that, but it still allows me to show up and be present in a way that makes me feel like when I'm talking to people or, like, around people that are hype professional, that I also feel like I fit into that scenario, but in a way that makes sense to my style and who I am, thus in what they present. And that started to make me realize like, oh, there are ways and there are clothing pieces and adaptive fashion super powerful for people because it allows you to be who you wanna be and express yourself in the way you wanna express yourself in the way you want to. And I love fabric. I'm a very much a sensitive human being. So for me, you'll see I wear like a lot of mesh, a lot of velvets, a lot of leather, a lot of lace. It's just what I love. But for a while, I couldn't find pieces that lended themselves to ease of dress. So it took a lot of research and a lot of planning. And I will say on my highest fatigue days, I do have what I call those loungewear moments. But loungewear moments where I still feel like me. So I'll have those trousers that have a little bit stretch, you know, if you feel bloated or something that don't take a lot of energy to pull on, not jeans so they're not tight. Although my amazing friend that works at Unhidden has created collections for Primark and her own brand where she has jeans where they are elasticated waist. And, actually, you can zip up to the knee. So if you're wheelchair user, there's an ease of dress, the length changes as well. So you don't have the extra materials and the extra, like, the situation where you need a little bit more length because when you sit down, your trousers go up. And if you're seated all the time, you want to still have your trousers hitting the bottom of your foot. She created an amazing collection where that was possible, but she also included loungewear and pajamas. And I think pajamas could also be a fashion moment. Because if you spend a lot of time in pajamas, which happens with a chronic illness, you still don't wanna feel like, oh, you still wanna be able to wear pajamas that make you feel good. And if they're adaptive, and if you need to stay in hospital, but you still need your IVs to happen, they have spaces where you can fit that part open and you can access them. So they have access points. So that when you're in hospital, you don't feel like you have to undress and take all your clothes off to be able to do the simple things that doctors need to be able to access to you, which I thought was super clever, but also gave you not only a little bit of privacy, but also allowed you to still feel like yourself at my most vulnerable moments. So that was really powerful for me. And there's a few other brands that I've come across like Human Beauty who have made makeups for people with disabilities, specifically in a way that we can hold them so they have wider basis. The makeup doesn't roll off the table. So you can imagine you put a lipstick down, you get to roll off side of the table, which helps everyone. If you're disabled or you've got disability, you've got so much energy, you don't wanna be, like, having to run off to your lipstick, Or you might only be able to hold the mascara a certain way. So you can actually do all the mascara like this rather than feeling that you have to do that, which means that depending on how you can bend your arm, you can still allow yourself to apply makeup and feel beautiful in a way that makes sense to you. Are we allowed to mention the brand that you just we're not promoting anything, but it's just for people who are looking some solutions to buy some adaptable makeup Yeah. Tools that we could actually. They're very, very well known. They've both been on Dragon's Den at some point, but you've got Unhidden, but they've also got a collection in Primark. And then you've got Human Beauty that has a makeup collection, and they make beautiful pieces that are easy accessible and adaptable specifically for disability and disabled people's needs. And there's many other Amazing. Adaptive fashion brands coming out now. We're in a very beautiful space where fashion universities are understanding the power of adaptive fashion, but not also the fact that it is a business in itself, and it's very lucrative if they take it on board. And they're actually teaching student in university the power of adaptive fashion and how to make their collections more adaptive. So that in the future, when they are the new designers of the next generation, they're making clothing that works for disabled people. And we know if it works for the disabled people, it works for everyone. Everyone can wear adaptive fashion. It's beautiful. They do stuff like well, they'll have hidden seams where it's literally just like buttons, like magnetic buttons that seal a seam, but it's invisible seam, so you can't see it on a pair of trousers or a shirt. But it doesn't mean that someone that's non disabled can't wear it. So they're just realizing there's, like, a powerful way of doing fashion that benefits everyone. And that's so refreshing to see, especially someone that took so much time in their life to find those pieces and collect them to make it work for me that the future might just be we're included, which is what we want for our wellness and our ease of dress. Those are excellent points, and functionality and fashion don't have to be mutually exclusive. And your tips certainly prove that. I think, you know, a lot of people change the shape as they live, you know, whether they they gain some more weight or they lose some weight, you know. So adaptive fashion, like, if you can wrap up yourself, you know, you can maybe you buy a few good quality, good fabric, breathable. Like, the the fabric is not synthetic or polyester, but it's more cotton, natural, organic. If I could call organic fabrics, are they available? There there must be some sort of Yeah. I think cotton, organic fabrics are Yeah. So I think the more natural, you may have, like, one or two pieces only. We don't need many things and follow the high fashion, although we may sometimes. Depends on your mood, how you feel, and how how, you know, what's your function to dress up for you in one or another shoe. I think the other hot topic is the shoe wear, and I could sometimes see people coming into my clinics and they wear various different shoes from flip flops to trainers. And and what what I am fascinated about is that the straps that you don't need to do your shoelaces, you know. Can you reflect a little bit on the shoe wear? And, you know, some some women like to wear heels, which is understandable. And if you can do that, perfect. If you can't, so flats, but let's let's delve a little bit on the shoe wear. This have been my absolute nightmare in transitioning with my disability and, obviously, having to use mobility aid and how my actual walk in itself has changed. I've got a lot of foot drop. So I was like a heels girl. I loved a good pair of heels, but then I realized one day, no, I can't do that because my knee would drop out and then my foot wouldn't always take the right step. So then it became slight slight little hazard to myself. So I was like, right, you have to put the heels away. There's days where maybe you can do that, but that's not every day. And then I started to get, like like, I say the kitten hill, but they're more of a block hill rather than the kitten hills. So they're technically still flat, but they kinda allowed me to feel like I was doing a little bit more than a flat. Finding adaptive footwear has still been quite a new thing, I will say, and be fully honest. Obviously, you've got places like Nike and stuff that have done adaptive footwear, and I actually have a pair of the trainers that you don't even have to there's no laces. It, like, flips open like this. You put your foot in, you put your foot down, and it closes. So they're, like, hands free footwear, which is, like, literally revolutionary, And it's so, so good and so ease, but they still haven't got enough designs in my liking. So if Nike's here listening to us, hopefully, they'll make some more for us. But flats have been good. I've been trying to buy higher quality flats, which is not easy for everybody in this current climate. But I do find, like, soft leather flats are a nicer with a good padded sole. It's that something that actually helps me walk? It's been helpful. I can't wear flip flops, so I'm not like a flip flop girlie, and I don't have a lot of friends that wear flip flops. We probably more like to wear Crocs because the strap kind of encases it around my foot, which I think for me has created less hazard. When I wore flip flops, I've actually gone completely head over and fallen over. Firstly, when I said These are the most dangerous flip flops. Like, each time I see walk somebody walk into my knees, like, oh my oh, no. No. No. No. And then now they have an answer saying, no. No. No. Doctor. Doctor. This is just for this moment. I've got to put other shoes in my car. It's like, thank god. But yeah. Because, obviously, even in a beach They're most dangerous. I can't do it. Like, it ends up falling over, and you want to because that's so beautiful sometimes, but you just there's no function in it. So I've been talking to a couple of people. Your your foot at all? No. Not support your foot. And it no. And if you have, like, a foot drop, so that's the worst. Like, you you you you can easily trip and and fall. So if you know, always consider before you're putting the flip flops on, if you have MS and you have some limb weakness, that's or or some balance coordination problems, that's really no no for you to wear the flip flops. That's the worst decision ever. Yeah. Absolutely. And I will say, Havana's do have a pair with a nice back strap, but, are elasticated, which was very helpful when you really if you must wear a pair of flip flops, at least get the pair of the back strap to keep them on your feet when you need to move because the other ones, like you just said, they have a hazard that comes with them no matter how beautiful they are. Trainers, I love. I've been trying to collect trainers that are both beautiful, but also work. So as you know, in healthcare, like, especially at conference and stuff, people like to have trainers, but there's a way of finding trainers that work in professional environment, but also work in your everyday, whether you're doing sports. And that's been quite helpful. And it can move through the world with ease. But I've had a lot of messages from people being like, right, I'm so sick of putting my dresses on and having to put trainers on. What do I do? And I'm like, look, we have to wear the flats. We have to get a good quality pair of flats for now until we we get those designers that are changing it. I'm having conversations with people. That's where a lot of my advocacy comes from. It's like, great. We've done the clothes. That's perfect. We'd love that. We're rolling with that. That's happening. Fantastic. Shoes, though. Shoes is something that everyone need. Then there's a you know, you need wide fit and non wide fit, and we need the array of sizes. But we don't have the good quality and the ease of purchase points and prices that are available right now. So how about that's our next step in these universities for the shoe designers to look at making adaptive fashion. And I have a lot of friends looking at that now. It's not as easy, but you've got a company called Open Style that was based in The US that have come to The UK for the first time. They did a cohort this year where they were looking at adaptive fashion. And currently in the V and A, you've got the disability and design exhibition. And they actually have books there, and they have well, they've made until designers change how they make shoes. They've created, like, a kit to adapt your original shoes to use them and be able to put them on with ease and move with them and ease. So that was useful and a really good insight into how we can adapt the things we currently have rather than having to go out and buy a bunch of new stuff because for a lot of disabled people, that's not possible. A lot of people's wallets are tight, and they need things that they can do with the thing they actually already have in their houses. So that's how they approach that. So that was the first step. But they're looking at how we can then encourage designers to make adaptive shoes, like you said, without lace it. There's a lot of people that are starting to make trainers wear you they look like they have laces, but they're not a stretchy thing with a Nike where you can just put your foot in, but you still have that, like, style point where you're like, well, actually, I like the look of laces, but I just can't do them. And they're creating those. It's helpful. The creativity and innovation is those techniques that really helps to develop strategies that would perhaps improve some mechanics of of the walking for people with MS. And and it's super important. It is coverable, and and I think it's gonna be a game changer for many of our listeners listening to what you just said about the brands and and what are the trainers or shoes or other clothes or makeup available for people with disabilities. So thank you for sharing that. Another important when we talk about the beauty and looks and fashion and and what what's important is, I think, the hairstyles and how to, you know, have a a good quality of the haircut that doesn't require a lot of effort every morning, as well as I would like to delve a little bit into the nail sort of function. Sometimes we have patients coming with ingress of the toenails, and that causes a lot of pain and extra problems for people to walk and mobilize, and particularly people who are more disabled, for example. So they really need to seek some advice. And if if you have a possibility to to have some manicure or pedicure on the regular basis, I think that's really important for overall wellness and and well-being. Would you agree with that? Yes. So I never used to get my nails done. I've only been getting my nails done for probably about the last five years, and it's something that I changed because I realized there was something it's a when I went to hospital, It was a quick grounding point to see my nails, and that sounds strange, but it just made me feel better about myself. No matter if my hair was messed up or if I felt like I couldn't get dressed the way I wanted to. When my nails felt good, I felt like, hey. That's still a part of me that's existing. But I make sure every month now that I go for manicure, pedicure. And it's like my only treat that I consistently keep for myself monthly. Because not only do I think it makes me feel good, there's something therapeutic about a little bit of self care for someone to take their time and for you to even take an hour to yourself where you sit there and you're not worried about anything. And you're just sitting with yourself and someone's giving you something back because we all need that. We all need that care, especially when you live with chronic illness. Like, you need to feel loved and loved, and it's not it's just a little bit of self love, which I think is so powerful for us. And it just makes you feel better because the same way when I wasn't moving around, like, I would look at my toes and be like, oh, this what's going on? Like, I I had to research for a while. Is there something connected to nails and MS? Like, how does what's going on there? Because I don't I feel like they're changing. But I realized a lot of it was probably because my self care and the level of self care I could give myself was actually changing. So then I had to go, okay. Now I need to pay for that. It's not always easy and that it's not cheap to get done. That's the one thing that I probably do more than even getting a haircut. I make sure I have that just for my own grounding. Yeah. And the hairstyle haircut needs to be convenient, that it doesn't disrupt your visual field, that you can see. A lot of people describe some double vision and blurred vision and sometimes eye pain, you know, that comes comes and goes. And you don't want anything to to block your your visual field, like something that you can actually, you know and and maybe just simple techniques like combing and washing and shaking your hair, and then it sort of it looks beautiful. You know? And and I guess that that's upon the hairstylist or hairdresser that, you know, makes you not to work every morning, you know, on your on your hairstyles when you wake up, like, it looks already okay. And I think it's it's a it comes from the hair industry, isn't it? Can you tell a little bit on this sort of hairstyles and what what to look for and what to ask when you go and see the hairdresser? So with my hairdressers, I always tell them, like, I've got curly hair, so it comes with so many levels. Right? So obviously curly hair in times itself is I sleep in my bed. You get that rubbing everyone does. So the first thing I did before even haircut was I changed one of my pillowcases to silk pillowcase. And then I do now wear, like, a head wrap, just like a silk head wrap, which stops the friction, which actually decreases the amount of cat tangle in. However, anyone that has MS, I'm listening to you, and trust me, I totally understand, that when our temperature goes up and we start getting hot fluffies, sometimes that's hard to do. So if you get really overwhelmed with temperature with MS, I would say go with the pillowcase, not the head wrap, because the head wrap traps the heat in. And actually you're going to feel horrible in the morning because then your temperature rises too much. I mean, I know what it's like. I mean, you get too much temperature rising with them. So I'd always go with the pillowcase, not the head wrap. And then when I go to the salon, I've got look, I have curly hair. Obviously, it dries out quite quickly, especially when it gets washed. I need an ease of cut. So I'd tell them a little bit about my lifestyle. I'd I'd have to be honest, and that takes a level of honesty. Like, this is what I do. I can only wash my hair once a week. What can I do? What products can I use that are easy to use? I have one day a week I can do this. How do I set myself up for the rest of the days? Obviously, some people need to wash their hair more. We do have dry shampoo in that. That's helpful. If you can only give yourself a spritz and a brush, that's always helpful to have. But I just tell them what my day to day life's like. Do I go to the gym? What kind of profession I work in? Where I want my hair? So if I want a shorter style with an above shoulder style that's workable with ease, I tend to stay away from bangs or fringes. Because if I can't do stuff, it grows out too quickly, then my already rapidly changing eyesight, it's not helpful when you've got something like your face that you can't use. And I just let them know, like, what I know about my hair because I didn't know a lot of my hair. Some of us know so much about our hair textures and what we need, and others don't. And I stopped dyeing my hair different colors. Before Emma, my hair was like red and black, orange and black, red, green and black. And I realized what happened was it was coming up very quickly. And then I felt like I looked a certain kind of way. I didn't feel as beautiful as I could because my hair washed out or my roots were coming through and that was just changing how I felt about myself. So I more like to go with more natural tones because it allows me to just feel like it's less maintenance. It's also less money to keep my hair in a natural tone. So that was also very helpful. So I would just my list of what I want what I like, the things and, like, the style that actually gravitate to naturally without my MS. Then I would make sure I had the foundations of, like, pillowcases that ease day to day so that less brushing, less tangling, not helpful. Let them know what my realistic wash pan looks like currently to my hairdresser. And then with them, create a plan of ease of what's the best stuff for me to go for, the amount of energy I have, and amount of maintenance I can uptake. Because some people can't get to the hairdresser every four weeks. Some people can get to every you might only go to every twenty weeks. But I was honest with that. They'd be like, this is what I need. I need something that can grow out in a way that still works until I can next come with you, whether that's where I can afford it or I have the energy to get there. And that was how I started that process. And, also, change your hairdresser if they can't do that for you. Please think about finding a hairdresser that works for you because it's the back and forth relationship. And, Dafar, I think that that's really helpful tips that you just expressed, and I can only echo and say having dry hair of mine. So the less you wash, the the less dry and more moisturized the hair is, and you can actually train your hair not to wash every day. You can Google and look into a curly hair method and identify certain products and how to train your hair that it's not greasy, like, that you don't need to wash it. So there is different approaches these days. And try to avoid parabens and sulfates because it strips your your hair. It makes it even drier, fragile. You know, you start losing your hair. So it's a horrible thing. Nothing against the head and shoulder, but watch the labels and make sure that there are no parabens and sulfates in it. Yeah. So lastly, the fashion industry is ever evolving. How do you see its role in promoting inclusivity for people with disabilities, and what changes would would would you like to see to foster this? So fashion industry has a massive role in creating, like, adaptive fashion and representation for disabled people. We have some top brands that we all know, that we all love. There's a lot of advertising. Advertising is a powerful tool. We all know that. It creates it in a way that we see it all the time. We have social media now. Advertising is like, we can't get away from it. And essentially, by actually having disabled people in these advertisements and actually having us part of campaign helps people understand, a, we exist. And actually, there was a market to create fashion for disabled people. It also allows disabled people to feel like they deserve beautiful, amazing fashion to be created for them. And it means that the wider world, the new designers, the people coming up, people that are looking at fashion, children that are like, oh, I love this designer because we all looked at fashion when we was kids, right, looked in glossy magazines. We looked at things that we did runway shows. And if there's no representation there, people can't see themselves in those spaces and those industries. And they don't feel like they have to constantly push through barriers and walls. Like, it's got a constant fight to be seen or to be heard in the fashion industry as a disabled person. We have a few top models that have disabilities, but even then, if you go into their Instagram and you hear them speak and they still to this day, find it really hard to get booked on jobs. And often when they do, they are booked by people that don't have adaptive fashion in the collection. It's more you're addressing disabled people in non adaptive fashion to and it feels like more like tokenism inclusivity rather than real inclusivity. Tommy Hilfiger made an amazing leap in fashion. He was the one of the first artists to create an amazing adaptive collection of pieces from his standard collections that looked exactly like everything else but had adaptive features. And that's the first designer to really go, okay. I care, and I wanna change this. But we need more designers to do that. We've got Victoria's Secret that have done underwear, which is fantastic. But we need more people to come on board, and we used to do it consistently and not for it to look like it's a one time moment. One campaign, one disabled people, one look. And realize that not all the same people are wheelchair users. Disability comes in many shapes and sizes and many genders and backgrounds. Some people use sticks and walking aids like this. Some people use rotators. Some people use wheelchairs. So we need to consider the fashion industry can consider when they're showing disability that actually disability is a full circle. It's not just one look, and to actually change how and who they're showing you in a disabled sphere. That's very helpful. That's helpful for people to see themselves. And it also means that the same people also might decide to become the next level of designers because they're realizing the industry itself is being more inclusive, which makes you feel like, actually, if I do this, there will be amendments and reasonable adjustments for me to be the best next disabled fashion designer rather than feeling like you're trying to fight against an industry that already has a level of toxicity in it. I, as a stylist, came out of that space because there was no adaption around, like, time frames and adjustments to be able to do my job. And for me, my disability is not as severe as other people's because I only use a stick. But I also had to pick up loads of collections and times six AM mornings don't always work for someone with MS. So we need to look at industry as a whole. We need to bring disabled people in there as people that you speak to to look at the way that we can change it. You've got an amazing Irish lady called Sinead Burke who does that with her brand currently. She's working with Vogue Business. She's working with top designers, and she is fighting to push for more adaptive, inclusive, disabled fashion and representation inside that. We need more people like her that also showing, hey. We have money. We want it, but no one's creating it. And not all of us can create it ourselves. What do you need to know from us? How can we help you help us? And then also then fill that through to actual imagery and stuff so the wider world also see the beauty and the benefit of having disabled people in the industry. Wonderful. Roxy, I love your sticks, and they like accessories to your whole look and style. So where do you get all these fascinating sticks? Right? Oh my god. This is red today. Right? So but you have different colors and different shapes. This is Amazing. Red. I don't know if this is I'm gonna pick up this, but, like, bubbles going through it. Yeah. It's called the Moulin Root Stick. I this particular one is from a brand called Neoworks, and they're perspex sticks, and they come with different ferrules on the bottom. They their amount of sticks they have is unprecedented. There's no way someone can't find a colorful stick on there that doesn't work for them, and they come with different handles. This is a Snoopy handle, but they have curved handles and they have straight handles. And if you have, like, a issue holding something that's hard, they do do silicone inserts to go over it, so you've got a bit of a softer pad. They've even got light up stick. It's actually quite incredible. Glitter sticks. They do customs. It's fantastic. But then I also have some wooden sticks that I absolutely love by another brand, and they have, like, crow faces. And I've got, like, a skull, and it's very Alexander McQueen. And you can actually twist the heads off and change the different handles to match your outfit if you're very like me. I do like to match things to what I'm wearing. It's just probably just how I like to style. I feel like styling is a very powerful tool, especially if you only have basics in clothing, and that's what you wanna wear, but you want to feel elevated. Having a beautiful stick or something that's an accessory also makes you feel like you are really, you know, showing an outfit, but not having to spend loads of money. And now at this point, people actually, like, message me to be like, hi. I've made a stick, and I think you'd love it. Or I've got some beautiful rollers, like, from Biarco and stuff that are absolutely gorgeous, come in multiple colors, super functional, very, very lightweight because having things that heavy is not my fault anymore. Yeah. And that's really helpful. Social media, Instagram has been an amazing space for me to find fit. If you put mobility aids in, the amount of mobility aids come up now is unprecedented. It's incredible. It was not like that a few years ago. And they're worldwide. It's just I don't know. I think it's the best adaptive fashion tool that's come out of it. Even wheelchairs now changing and being totally amazing. You've got, like, wheelchair covers for the wheels that are, like, colorful and beautiful. And, yeah, it's just there's no limit to beautiful, fashionable mobility aids currently. Wonderful. It's it's an asset that you use for blistering your function and mobility. Quite often, people say, oh, I don't want to start using stick because I feel like I'm getting more disabled and more progressively worse. But actually, stick gives you a lot of more ways of function and walk and do things for yourself. So so it's it's really a adjunct adjunctive therapy and and the beauty assets that some people who don't even require to use a stick now, they're gonna start using after this presentation of various different shapes and colors and styles that are available and watch on the media and Instagram, and look for the right one for you that really will brighten your day and uplift your spirits and make you feel better overall. So we all and we both now today with Roxy would like you to be beautiful, to be inspired, to be confident, and and start looking after yourself from the day one when you are given diagnosis or even before the diagnosis. The more you establish your routine, your behavior, the better you're gonna feel in the long run. MS is not a sprint, it's a marathon. It's a long journey, so you really want to set the scene that you're gonna feel good about yourself. So, Roxy, your powerful vision for the future of fashion is is extraordinary. I really enjoyed every second spent today, which is probably continue forever and all day long. Your contributions are certainly paving the way for a more inclusive industry. And and to every listener, please do look after yourself. Be beautiful. Try to make your day with simple behavior, simple tasks that makes you feel uplifted, inspired. And as we wrap up, I want to thank you, Roxy, for such an enlightening conversation. Your expertise and experiences and expression have not only educated us, but also inspired us to embrace our individualities, our personalities, and who we are to live this life no matter the the the disability or functional dysfunction. So to our listeners, thank you for tuning in. And remember that fashion is for everyone. Nobody's excluded, and and it is an expression who we are, and there are no limits to how we can express ourselves. And disability is not a barrier for this. So be beautiful, everyone. And, Roxy, where everyone could find you to get inspired to get to get more views and insights of your life and who you are? So I have an Instagram, which is the multiple sclerosis fashionista. And I also have a website which is www.multiplesclerosisfashionista.com. You can send me an email or message. I'm more as happy to help. Do reach out. I love having more and more people and together. Hopefully, we can be more stylist, more fashionable, and more amazing with Emma. So thank you. Thank you, Roxy. So don't forget to follow us on the Be Well with MS, www.bewellwithms.com for more episodes. And until next time, stay well, be well, and be empowered. Be beautiful. Bye for now. So let's buzz online now in the meantime, and have a merry Christmas and happy New Year. Thank you. And enjoy enjoy yourself. So, yeah, be beautiful. You too. As you are. Stay sparkle. Thank you. Bye bye.
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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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