← The MS Trust podcast
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- [00:05]
A
Hello and welcome to Breaking It Down, a podcast from the Ms. Trust. My name's Nick and I'm joined by our host today, Helena. Hi, Helena.
- [00:13]
B
Hi, Nick.
- [00:14]
C
How are you?
- [00:15]
A
Yeah, not too bad, thank you. How's it going?
- [00:18]
B
Yeah, it's nice. We're seeing a bit of springtime outside the window. That's pleasant to see.
- [00:24]
A
Bring it on. Absolutely.
- [00:26]
B
As Nick mentioned, we work here at the Ms. Trust, which is a charity for people affected by Ms. In the uk, and we are here to help you make some sense of.
- [00:36]
A
Ms. That's right, Helena, and we produce lots of content on Ms. So, like this podcast that you're listening to at the moment, plus a website filled of everything that you might need to know about multiple sclerosis. We also produce books and other publications on ms, and currently our content team is working on a book about progressive.
- [00:56]
B
Ms. That's right, and this book is coming out soon, so please keep your eyes out on all our socials to find out when and to tie things in with this book about progression in ms, we wanted to do two podcasts focusing on progressive Ms. Next month we're going to be talking about treating progressive ms, but this episode we are going to be talking about how do we actually come to terms with a progressive diagnosis.
- [01:27]
A
Hearing a health professional use the term progressive when describing your ms, whether you've been recently diagnosed or you've been living with relapses for a while might come as a bit of a shock, and we really do appreciate that. However, some people might also feel a bit of relief if, in that situation as well, to finally be able to have a name to put to the cause of your symptoms. Everyone does react differently in that situation, and that's okay. And today we hope to be able to discuss progressive Ms. Diagnosis and how that may affect people emotionally. Plus, we'll look at discussing some of the steps that you could try to come to terms with that diagnosis, and.
- [02:08]
B
We are hoping to do this. We're starting off by listening to one of the authors from our Compton team, Gemma, who had a chat with Dr. Angeliki Bogoshin, who is a health psychologist who's done a lot of work within this field of coming to terms with diagnosis.
- [02:31]
A
That's right, Helena and I also spoke to Yvonne, he lives with primary progressive ms, on how she reacted and is coming to terms with her diagnosis.
- [02:42]
B
And I caught up with Adam, who lives with secondary progressive now, and his wife and Kara, Sharon, and heard all about their journey.
- [02:52]
A
Yes, there's lots of content to get through Helena, so I Think without further ado, we will jump in. Let's start off with Gemma and Dr. Angeliki Boghossian.
- [03:01]
C
Hi, I'm Gemma. I'm part of the information team here at the Multiple Sclerosis Trust. In this podcast, we're going to be talking about the psychological impact on of a progressive Ms. Diagnosis and how you can adjust and come to terms with that diagnosis. So I'm here with Angeliki Bogojian, who is a health psychologist and researcher. So, hi, Angeliki, thanks for joining us. Could you start by introducing yourself and telling us a little bit about your job and your research interests?
- [03:29]
D
Hello, Gemma. Thank you so much for the invitation. It is a pleasure to be here and discuss the diagnosis, progressive Ms. A little bit about me. As you said, I am a health psychologist and I am a leader or associate professor in health psychology at City St George's University of London. My research is, for the last 15 years now, it's been around multiple sclerosis and how people adjust psychologically, adjust to the condition, and also how their family members adjust as well. So I started with kind of a master's degree, Ph.D. postdoc Ms. Fellowship. Everything was around Ms. My whole research was around Ms. And more recently, we have also conducted some studies on mindfulness and how mindfulness could help people with progressive Ms. And, and I've also done work on Parkinson's condition. So, yeah, that's me. That's my background.
- [04:38]
C
Thank you. That's really interesting. So shall we start by maybe if you could talk a little bit about what you would say to someone who's recently been diagnosed with progressive ms?
- [04:50]
D
Yes, that's a good question to start off with, because I would say, I wouldn't say anything. This is the thing, because people feel this pressure to say something and to make the other person feel okay and feel nice, but they might unintentionally cause more harm than help. So I have heard stories about people trying to kind of sit with the diagnosis and think about it and kind of, you need someone to be there to listen to how you're processing things and how you're understanding what the diagnosis means for you, rather than have people telling you, oh, you know, you need to be positive, it could have been a brain tumor. So, you know, and then you feel you haven't even processed how you're feeling. And you might be feeling upset about the diagnosis. And then you feel even more upset because you are not feeling positive at all, that it's not something worse than that, than a mess. So it's, yeah, or I Had people telling me that they find it very unhelpful when others came up with anecdotes about other people they knew and how they cope or what they do, because it's not their journey. So they need some time to process things and not compare how they feel with how other people feel. So I would say not feel the pressure to say anything to someone who has been just being diagnosed, but just let them give them space to express their thoughts, their feelings, and give them space to talk as much or as little as they like. In this initial stage, there is not the space that people will feel open to any advice or any guidance at that point.
- [06:41]
C
That's a really interesting response to that question. And yeah, it sounds like the most important thing is allow that person to have a little bit of space to process everything and go through whatever emotions that they are feeling. Which leads nicely onto the next question around what people may be feeling, what emotions might people go through? And what would. What would you consider to be normal emotions for people to be feeling?
- [07:06]
D
Yeah. So we conducted a study, a qualitative study, where we interviewed 34 people with progressive MS, and there were people recently diagnosed. And we asked that question about how to tell us more about the diagnosis, the process, which is usually very lengthy and complicated, and also how they fell through the diagnosis, the process and the outcome when they got the diagnosis. And the responses varied a lot. So we had 34 people and we had 34 different responses. So there were people who felt very upset about it, people who were relieved to have something concrete that they could work with. There were people that they felt numb and didn't. Really didn't know what they felt around the time. So there is a huge number. Some people were feeling embarrassed, some people were feeling angry. Some people were very worried about their work or about families or other things that they were happening at the time with their families and how this might have an impact on that. So depending on their history, on who they are, on what their current situation was, there are quite wide variety of emotions.
- [08:36]
C
That's interesting. So it's very. It is very unique to the person and they might. They might experience sort of multiple emotions at various different times as well. So from your sort of experience and research, what can actually help people come to terms with a diagnosis of progressive ms?
- [08:54]
D
Yeah, so there is. The diagnosis could be kind of a threatening thing, kind of a stressful. A stress. A stressful situation for people. And we have this, as human beings, we have this natural response to stressful situations. So we will either fight it or we are flying away from it. So we will run away from it or we will try to kind of fight it. And this is what we normally see with people when they are trying to come to terms to the diagnosis, to try to ignore it or try to fight it in a way to kind of pretend that. To carry on whatever else they were doing without taking into account that now this is what is happening and they will experience some symptoms and they need to take into account those symptoms rather than trying to kind of just carry on as they used to. And both these responses, although they can come naturally, might not be the best responses and the most helpful responses when it comes to. To come to terms with the diagnosis. So we. It's got. There is. There is a third option. There is something else that people could do so they could let those emotions and feelings that come up when they have the diagnosis and give some space, as I said in the beginning, kind of giving space to these emotions. We not running away from them, but not also fighting with them. So giving them some space. And that is quite useful because it can give you quite useful information about what you need to do next. So it helps you be more present with what is happening. And when you are more present, you are more in control of next steps of your emotions. So you're not reacting quite quickly to whatever you're thinking on, whatever you're feeling. You have a little bit more space to decide whether it is helpful, your next step or what you want to do next, how helpful it is and whether you need to go down that road or whether you need to ask for professional help or to ask help from your family members. So kind of having this space and letting these emotions, even though they might be uncomfortably could be quite useful helping with coming to terms with the diagnosis.
- [11:42]
C
That's a really. Sounds like a really useful approach. So just sort of stopping and recognizing what you're actually feeling before sort of acting on anything or trying to fight against the emotions and sort of ignore them. That's really useful advice. So what would you say to someone who's perhaps lived with relapsing Ms. For many years? So they're used to sort of living with relapses, but now their Ms. Has changed and they've been told it's progressive. What would you say to that person who might be potentially feeling like they're sort of almost dealing with a new Ms. Diagnosis all over again?
- [12:17]
D
Yeah, we also done a qualitative study study of people with. Yeah. Have been. Who has. Have recently been transitioned to secondary progressive Ms. So we've done about 21 interviews and we were asking people that how they felt with. Yeah, with having this second almost diagnosis. And for. There were a couple of people that they. They found it really shocking and they weren't expecting it at all. But for most people, because the secondary progressive diagnosis, it's not a straightforward thing, it doesn't usually happen quite quickly. It happens over a few years that people will already kind of have a feeling that this is what is happening. So there were more. Most people were prepared with that second diagnosis. Not everyone, but most people would be prepared. And then it's the same idea as with the first diagnosis to kind of give yourself some space to process what is happening. And also people were in these interviews, they were quite useful kind of insights from the interviews of what people found helpful. So they were saying that what they found helpful was to plan things ahead. So they were more. They felt more the need to have things in place and plan things around their house and plan things around their care needs, plan financial kind of goals and having like financial advisors to help them with retirement plans or saving plans. So there was a lot of planning that people find it quite useful and reassuring that, you know, they are in control of what's happening. And they were also talking about maintaining their social roles. So they were, they were talking about how important is for them to, even though they might feel more tired, to still find ways to speak to other people, have people coming around to not be, to not become too isolated. And also a lot of people felt because they've been through almost twice diagnosis process, they felt that they now knew the condition much better and they wanted to help others. So quite a few people from the group that we interviewed were talking about how they found helpful when they got involved with Ms. Charities, Ms. groups, local groups, helping others with diagnosis or being more active in the community. So kind of giving, giving to others and being more in social situations helped the kind of things that. A couple of things that I found quite interesting again was a small study, so we can't, you know, draw like big conclusions and certain conclusions, but it was useful in terms of identifying patterns and exploring really in depth of experiences. So one thing that I found was that people who were talking about having had psychological difficulties before the first diagnosis or the secondary progressive Ms. Diagnosis, the second diagnosis triggered those issues and they brought them back on. So again, it's not a representative. You know, I'm not saying this is what is going to happen to people, but it could be something that people could Be aware of and seek advice, seek support for their kind of emotional support as early as possible when they find that, you know, things are a bit, starting staring up. And the, the other thing that I found that I think pretty much everyone in the, during the interviews talked about was a sense of helplessness. So when you are diagnosed with secondary progressive ms, there is a sense that, okay, now I can carry on taking on my, my medication anymore. There's nothing yet that can be done for my condition. And they felt like a let down from the health services that, you know, nothing else can be helpful now or no one can help me. And then when I discuss those findings with healthcare professionals. So we've got kind of links with neurologists and Ms. Nurses and other specialist nurses, OTs and they were saying, but that's not true because we could help with symptom management. There is an MTD team, multidisciplinary team in most trusts so they can come to the, you know, the different symptoms that they may face. So I think there is a bit of a disconnect between what the health professionals felt that they can still help with and what people with Ms. Can, felt that they could get out. So perhaps there is something around being a more almost active advocate of your condition and kind of demand, say, I need this. This is what. Yeah, this is not working quite well for me. Can you, you know, what, what can you provide? And I understand, I am mindful of how the, the health services differ across the UK and not everyone will have the multidisciplinary thing there for them to help. It is worth asking to see what is available with the various symptoms.
- [18:26]
C
Yeah, I think there is this, yeah, this sort of idea that if you have progressive ms, there's not really anything that can be done for you. And I think sort of raising awareness about the support and health professionals that can help you with symptom management and things. It's not, you're not, you shouldn't be sort of left alone to manage progressive Ms. There are treatments and sort of therapies and things that can help with the symptoms. So yeah, it's really important to sort of be proactive and yeah, sort of, yeah, do demand support and try and sort of, yeah, be the, the expert on your Ms. And, and try and fight for the, the care that you need. It's really interesting actually to sort of listen to you talking about the interviews you've done and all the like sort of personal experiences you can draw on when answering these questions. I liked what you were saying about Sort of, some people sort of felt they could sort of focus on the things they could control with, like future planning and things. And sometimes having a diagnosis like this does sort of force you to think about the future. So yeah, those sort of things are really interesting to hear about. So the next thing I wanted to touch on was sort of. So with the nature of progressive ms, it means that people may face increasing disability and more physical challenges over the years into the future. Generally that happens. It's quite a gradual process for people. But what strategies can people use to cope with sort of seeing these changes in themselves? Because this must sort of impact their sense of self and self esteem. They might start to compare themselves to what they used to be able to do. So do you have any sort of strategies that people could use to sort of deal with that, that sort of the changes they're seeing?
- [20:10]
D
Yeah, I think the most important thing is the flexibility with these strategies. So it's not when adjusting to a condition like ms, which is progressive and it changes and as the years progress, the condition progresses and also the people change. We change. We all change. We have different priorities in life. Yeah, we enjoy different things at different stages. So it is important to have almost a toolbox of different strategies and different techniques and then draw on those and be able to just pick and choose which one serves you best at the time. What we usually tend to do, we all do that. We have a couple of things that their favorite things and we go for them. So we feel upset, we play video games and this is what makes us feel better. So every time we feel upset we play video games. But that's responsible or that coping strategy, it's useful, but it's not always useful. So it's, it's important to have this kind of flexibility. And again, sorry, going back to my, my research because I think people come with the best idea. So just what people say. So again, kind of within the interviews when we're talking about what, what they found helpful was kind of the sense of people were doing kind of a couple of things. So they were either scaling back on what they were doing, so they might be, I don't know, they were loving attending their garden and then maybe they had someone helping them with a bit more heavy digging type of stuff and they were kind of planting because they found that easier. So they kind of scaling back what they were doing. So they were still doing the things that they always enjoyed but they were doing them in a different way, in a more scaled back way, or they were adapting the kind of things they like. So if they like kind of hosting family dinners, they stop hosting family dinners. But they were going to someone, you know, someone else from the family was taking that on. So they were still doing that. So they were finding other ways to. Yeah, to still kind of do things that they enjoy, but in a different way. So it's either scaling back or adapting. And they were kind of like a back and forth of this. And what was interesting was that people who were able to either scale back or adopt and then move through different strategies, they seem to feel more kind of satisfied with their life and more kind of happy with how things are, are. And there were some other people who were kind of feeling like, I don't know, there's nothing I can do, I can't think of anything I can do anymore. And they were kind of disengaged of. Disengaged completely from, from the process. And what we found again in the research is that people who. It was really helpful. The, the environment people were in was also helpful. We, we do talk about the individuals and what individuals can do, but people's environment is so important. So if you have an environment where you have family members or friends who are helping you with this kind of flexibility, giving you ideas, supporting you with the decisions you are making, it's so much easier to identify the strategies that work for you and also be flexible with those strategies compared to if you, yeah, your environment is either not helpful or you don't have as many kind of links with families and family, family and friends. So. And then kind of going to the, the identity part that you mentioned, which is very, very important of kind of, because that comes quite a lot in a lot of the work that I've done, either in interviews or in group sessions I had with people with progressive ms, this kind of sense of identity, you almost say you lose it. You feel like you're losing it. And one important thing that people could do is to identify their core value, what is really important for them. So for example, if someone is the breadwinner, the main, the main bread breadwinner of the family, their value of course, is not, I am the one who makes money. I'm the money. It's not, it's not the money. The, the, the real thing, the kind of, the essence of, of, of what is important them, the essence might be that they like providing security to the family or they like, this is a way to show love to the family because they love the families. Kind of. That's, that's the thing that's how they express the law. So identifying what is that core and what is that the important thing for them and then trying to find other ways. So what other ways you can find to provide the security to your family that doesn't involve you making, you know, the main salary in the household? And that usually helps when you identify really what is important for you and then finding other ways to satisfy that and then that helps with the sense of identity. So it's still you, the things that are important to you, they're still important to you and you're still. Your actions are aligned with this. The things that are important to you, but you have found different ways to satisfy those. Yeah. Core values that you have, your personal values.
- [26:06]
C
Well, thank you. They're all really, really useful strategies. I love the idea of the toolkit of strategies and sort of adapting and changing, but adapting to the changes, but being. Making sure you're supported in making those changes as well and finding a core value as well and thinking about how you can, how you can still try and meet that in your life is really important. So yeah, they're all really, really useful strategies there. I wanted to move on to talk a little bit about sort of psychological therapies, talking therapies, what they involve and how they could potentially help people with a progressive Ms. Diagnosis.
- [26:41]
D
Yeah. So there are quite a lot of different approaches, talking therapy approaches and it is important to find the one that kind of matches and speaks to you and you feel comfortable with and to find a therapist or a counsellor that is kind of aligns with. With you. And I think a lot of people try therapy but they have a session and they don't find. They don't click with the person or they don't click with the approach and then they say, oh, you know, therapy is not for me. But there's so many different ones. It's just maybe that specific branch didn't speak. So it is quite important to have. Yeah. A look around to see what it is available. And there are approaches that they are more around kind of identifying the past and how kind of past relationships or past experiences have influenced how you're feeling now or how you are reacting to things now. Their approaches are more around systems and families and how the system kind of supports how you feel or how you act at the moment. And kind of understanding this links help you kind of find your way out if you feel stuck at a certain point, helps you to feel unstuck. The most kind of common in a way, the more widely available and also the one that we have the most evidence for is the cognitive behavioral therapy, also called CBT or kind of shortened. So, yeah, some people might have already heard about that approach. And this approach is usually brief. And the therapist will help the person with Ms. To identify thoughts and thought patterns that might not always be helpful and finding ways to kind of challenge almost those thoughts. The main principle of CBT is that our thoughts are linked to our emotions and they're linked with our behaviors. So behaviors, thoughts, and emotions are so linked. So if you change the thoughts, then the emotion will change, then the behavior will change, or if you change the behavior, then the thought will change. So it's kind of a vicious or virtuous cycle. So they're trying to identify anything maladaptive, anything that doesn't work, and they think that it's easier to change. So we change that and then the cycle will change. So. And that's how people feel unstuck if they are kind of going around the same kind of unhelpful, maybe thought. And, you know, no one wants to talk to me anymore. So I don't go out to meet people. And because I don't go out, I feel lonely and I feel left out. I feel helpless. And because I feel lonely and helpless, this is more likely to feel like other people don't want me. So then you go around and around, and then it becomes quite difficult to get out of this. The things that I was talking earlier about core values and aligning actions with those core values. So this is a different type of therapy that is called accept and commitment therapy, or act. And that therapy is more around, okay, you have thoughts and you have feelings. We don't do anything about them. Let them be. And while you are letting them be, direct your attention, your focus and your energy into things that are kind of fulfilling for you and will enrich your life. So don't spend any energy. It's a different. There is not, you know, this approach is better than others, just a different way of approaching things. They. They all can be helpful. And then, yeah, different people will. Yeah, will find each approach more kind of aligned with them. So it is important to find the one that is aligned with you rather than.
- [30:51]
C
Yeah, it's probably. Yeah, it's a very individual and sort of personal thing, isn't it?
- [30:55]
D
Of course.
- [30:57]
C
Can you access CBT and ACT on the nhs? Are they available?
- [31:02]
D
Yes. So most. Most talking therapies in the NHS will be either ACT or cbd. Yeah, cbt, definitely. But now more. There's more and more ACT approach Especially in long term conditions.
- [31:21]
B
Okay.
- [31:23]
C
And moving to look at more sort of like self management approaches. What can people do themselves to look after their mental. Well, I know things like mindfulness are sort of quite widely talked about now, so maybe could you talk a bit about that or any other sort of self management strategies that you'd recommend?
- [31:43]
D
Yeah, so mindfulness is a very good example. Gemma and they. We also have conducted a study on mindfulness for people with progressive Ms. And we, it was kind of a small trial and we did show that within the eight weeks that people were. The mindfulness course was an eight week course where people learn mindfulness and then at the end of the course people have reduced in anxiety and depression and improved quality of life. And what I really liked in this study was that we follow up people three months after they finish the course. Because usually with a lot of the therapists, one of the criticism is that once you finish it, once you stop it, then you return back to where you were before. But it looked like with the mindfulness, it looked like people carried on using the techniques and carried on with the mindless meditation and they improve even more in the three months follow up. So we saw kind of an increase in quality of life and even further decrease in depression, depressive symptoms was very positive results and very, yeah, encouraging for us to see that. So mindfulness is a technique where you learn to stay present. So you are spending some time observing your thoughts and instead of following the thoughts as we usually do, we let those goes, those thoughts go and we come back to the present. So usually people will focus on their breath or a part of the body or you know, something in the environment. So that will be the focus, the mindfulness focus. And it is more kind of train the brain to do that, to have the skill of getting, letting go of this thought, coming back to base and then the mind will go. And then kind of the more you do it, the more, the better you become at this skill of staying focused. And because you stay focused on the present moment, it's less likely that you will follow kind of thoughts, anxiety provoking thoughts for the future or maybe thinking about the past and how things used to be and feeling a bit depressed about that. So you are letting go of that. And that's why we see improvement in mental health when you are staying in the, in the present. And there is a little bit of evidence around staying in the present. And that kind of helps with fatigue as well and pain because you kind of don't. With fatigue especially, you're not Spending your energy on past and future, you're staying on the task at hand. So yes, mindfulness and people can find mindfulness, they can track their courses everywhere. There are a lot of online courses. There is a new kind of group now called with doing Breath Work which is similar to mindfulness and they, they have a branch for long term conditions and they do courses online. But there are a lot of free online mindfulness meditations that people can try. So there are lots and lots of resources and you don't need to spend lots of money to access those and practice and see if that's something that can help. Things like expressive writing also could be helpful and there is some evidence about that where you kind of write about your, your experiences and that could be quite therapeutic kind of this in a similar manner as talking therapy that you are kind of processing what you are thinking and what you're feeling. And there are a lot of resources around identifying your core values. So if that's something that you. Yeah, someone would like to give a try. So there is an author called Ras Harris, he wrote a book called Happiness Trap and that was kind of an explanation of what acceptance commitment therapy is. And he has quite a lot of free resources on his website. So he has kind of activities of how to identify your core values, how to align your actions to your values. So again people can have a look and see if they can practice some of those, some of those techniques and skills. And as a kind of like finally more kind of. Yeah, I know a lot about coping.
- [36:43]
C
Sorry, carry on.
- [36:47]
D
It's a thing. But kind of like to kind of close up this question, we have this what we call an emotion focus strategies and problem focused strategies. So when depending on what it is that you, you need to address you, you can have different ways of approaching it. So usually if something cannot be changed and there isn't anything that you can do about it, it's better to look at kind of more emotion focused strategies. So you could do things like, like talk to people close to you about it or write on a journal about it. So kind of like just explore your emotion and give some space to your emotions in a protective environment. So that can be something. Whereas there might be the more problem solved problem focused strategies. So if something can be changed and there are things that you can do about it, it's kind of more around what people in my interviews were saying about planning. Maybe that's something that it is useful or asking help from healthcare professionals about something or you know, they are kind of more practical steps and thinking through what I can do, who can help me when I can do this kind of. To solve. Yeah, that.
- [38:19]
C
Issue, that was really helpful. So many, it's really useful stuff and I'm sure there'll be, yeah, lots in there that people can sort of go on to have a look at and might find something that works for them. So just to sort of round up and finish off, my final question was sort of a bit more general. So do you have any tips for coping with future uncertainty about your health?
- [38:46]
D
Yes, there is, it is something. It is again something really common with all the long term conditions and especially with multiple cures about the uncertainty. People usually say they don't know, you know, what's going to happen, how things will progress, if they will progress, how quickly. And yeah, you know, there is a lot of uncertainty and there are things avoiding the, avoiding this emotion or trying to deny it again cannot be, it can't be as helpful in this situation because if you think about it, uncertainty is something that is not, is not comfortable. No one wants to feel that way. But at the same time it's nothing bad is, your brain wants to know what is happening in the future because that's how the brain has been functioned forever. They, you know, the brain needs to know what is happening and this, because it doesn't know, it creates this incentive having to know or having to find out what it is. But maybe there is a way of, a different way of approaching and saying it as nothing bad is happening at this moment. It's nothing threatening, it is what it is. It's not comfortable, but it is, it is a space where there is fluidity of how things will plan out and maybe this fluidity will lead to kind of uncovering new relationships with families and friends, family members and friends. Or maybe it is a space where you will help you to reprioritize why it is important for you and how you want to spend your time. So it might be kind of an opportunity to discuss these feelings of uncertainty with friends, with family, with healthcare professionals. And there might be discoveries through this space and the changes that this will bring. So it's nothing, it's not comfortable. And I don't want to kind of minimize it in any way because it is, yeah, it's, it's a difficult thing for people to stay with, but at the same time just thinking of weight as something that is not threatening, even though the brain is like, oh, we need to solve, we need to know, we need. But staying with it could be a way of approaching it without, without avoiding it, without trying to ignore it, but kind of see it as a space where new things might come up and new discoveries and, yeah, new ways.
- [41:43]
C
That's a really interesting, interesting way to look at it and sort of thinking about how your, how your brain sort of physically is working and why it's doing that. It's a sort of different sort of perspective on it. Thank you so much for answering all those questions. I'm sure there'll be so many things in there that people can look into themselves and, and strategies that people can try which will be really helpful. So thank you so much for, for taking the time to talk to me today.
- [42:07]
D
Thank you very much. Mercy.
- [42:10]
B
Now, this mid part, if this was a commercial podcast, is where you would expect to hear an advert, but as we're a charity, we don't do that. So instead we'd like to take this opportunity to talk a little bit about the resources that we have for people.
- [42:25]
A
With Ms. That's right, Helen. Er, so you can head to our website, that's mstrust.org.uk UK and on there you'll find lots of free information and resources for anyone impacted by Ms. If you search for progressive ms, you'll find information on both secondary and primary progressive Ms. And do also keep an eye out for our new book on the topic, which will be coming out soon.
- [42:51]
B
And now on to our personal stories part of the podcast. First Yvonne and then later on Adam and. And Sharon.
- [42:58]
A
Hello there and welcome back. We're joined by Yvonne. Hi, Yvonne, how are you?
- [43:02]
E
Good morning. Not too bad, Got a bit of a cold. Apart from that, I'm pretty good, thanks.
- [43:07]
A
Oh, gosh, yeah, we're both full of cold at the moment, so we'll have to see how the recording goes. So could you tell us about who you are and your Ms. Journey?
- [43:16]
E
Yes, my name's Yvonne, I'm married and I live in. In Shropshire. Retired now. Diagnosed with multiple sclerosis, primary progressive version of in 2013. I live a kind of happy, happy life. I keep myself pretty active with some volunteering work which I do for the Ms. Trust and also I volunteer at a group helping older adults get online, so helping them learn how to use technology. So my Ms. Journey was one of a lot of frustration around the early stages. I was probably 5 years plus with Ms. Before it was diagnosed. In fact maybe as much as nine years. Symptoms in my feet that I tried to ignore, loss of sensation and loss of proprioception. So the awareness of where my feet were were all began to feel Very muddled. And I did go to my GP a couple of times and got referred to sort of physios and orthotists and had insoles and advice. Nobody could really identify what the problem was. And. And then I had some bladder and bowel symptoms that resulted in all sorts of unpleasant and, yeah, invasive investigations to try and figure out what was going on with my bowel. There was all sorts of thoughts that it was a functional or a physiological problem of some sort. So I was seeing a colorectal surgeon, started to see urologists with regards to the bladder problem, and then I don't know what. What happened that made me make my surgeon aware that I'd got these sensation losses in my legs. For him to then think, maybe what's going on in your bladder and your bowel is neurological rather than physiological. And that resulted in a referral to a neurologist and getting MRI scans and eventually a lumbar puncture to make the formal diagnosis of Ms. And when that came, it was a bit of a body blow. I'm an occupational therapist by professional background, although I haven't worked clinically for a number of years, had moved into management and leadership. But in my time working for social services particularly, I'd worked with people with ms, all of whom had got very serious consequences as a result of their disease. And so for me, that's what Ms. Meant. I didn't have a broader understanding of the range of diagnoses. I'd never actually even heard of primary progressive Ms. And so it all came as a kind of a mixed shock and an unexpected piece of information that. That probably I. I did know in the back of my mind that it had to be something like that.
- [46:41]
D
The.
- [46:41]
E
The bigger shock came, though, when I was told there was no treatment for it, that I. What I knew of ms, people would say, well, you know, there's. There's good treatments now. It's not something that needs to go unchecked, but as my neurologist told me, for primary progressive Ms. At that time, certainly I know that since oculizumab has come on the scene and that does suit some people with PPMS and act as a good treatment, but for me, it wasn't available then. And so when I went with my husband to hear about how we were going to manage this thing, that was the answer. There's nothing. And that was more of a shock than the diagnosis. I think I got the diagnosis and then was expecting somebody to say, and we'll start you on treatment sort of next week. Or the week after or something, and we'll get this thing under control. And. And so that was really quite difficult. What happened quite early on for me was a referral to the Ms. Nurse Services and from then until now, I have good support from the Ms. Nurse Services and I have an annual review with one of those who's. Because I moved, we changed service, but they picked me up pretty quickly after the move and I see the same person now got continuity and input. That really helps me to know that I've got somebody to go to if I've got some new challenges and somebody who really understands the breadth and depth of the disease and how it can affect different people in different ways and know what. How symptom management can be the, probably the best, the best option. So, yeah, I mean, I was told several times that PPMS was probably the worst type of Ms. To have, but I don't think that's true. I think, you know, you have your own Ms. And regardless of the label that's applied to it, you and it will go on a journey together that will be unique to you.
- [49:02]
A
Just going back to that, Yvonne, how did you feel emotionally at that time?
- [49:08]
E
I was pretty self shocked and I kind of thought my life was coming to an end. You know, everything that I'd planned for, hoped for, dreamed of, not just me, but my husband, you know, our life just seemed to the bottom fell out of it. I think I'm fairly certain, looking back, that there was a period of at least six months where I was probably clinically depressed, I sort of disengaged with everything and although I was getting good support at my place of work.
- [49:49]
D
Which.
- [49:49]
E
You'D hope, NHS Trust, you'd hope it would be able to support people with these kind of challenges. So despite that positive support, I just, yeah, there's a lot of crying, there's a lot of, why me? I don't deserve this. This is, you know, what have I done to make this happen? Lots of self recrimination. Although I knew there was nothing, you know, cognitively, I knew that it was my lot that had somehow come home to roost. You can't help but think, I think going through those initial weeks and months that if you'd have done something differently, that life would have been different. So pretty much kept things to myself and my husband for the initial period, but then I decided to get angry at it and I think this is probably a normal grief reaction. Your loss of your health and your future is, is shocking and you go through those stages of, of losing Something and what you've lost is your, is your health and the potential for you to be a person that you know now that you're never going to be able to be or you think that you kind of go to the darkest place and you. I certainly did presume the world worst kind of outcomes. I was deteriorating quite rapidly around that time and I foresaw myself in a wheelchair within a year and having to give up work and everything was very, very negative in my head for the first, the first period that I was very much introspectively dwelling on how awful it all was. So, so then I, I think I just positively decided, I said to get angry and just share rather than keep it all to myself. I was just going to share it with everybody and so I, I made appointments as it were to go and see people so other members of my family and I don't think I'd even told my parents early on because I knew that they would be absolutely devastated. In fact my father had, had already died and I remember recalling, thank goodness that he wasn't around to learn this piece of news because he particularly, I was very close to my father. He particularly would have, would have found it very difficult to deal with. My mum was very stoical. She just is, you know, you just get what's dealt you and you crack on, deal with it kind of thing. So yes, I made appointments to make sure that I got people's attention when I was speaking to them and sharing the news. I didn't want it to just be a dismissive throwaway part of the conversation.
- [53:05]
A
Yeah.
- [53:05]
E
And, and then I, I decided to do the skydive for the Ms. Trust and put my, my devastation to positive purpose. And, and, and then I wrote individually an email to everybody in the trust that I worked in. So I think it was about 9,000 people at the time. Just shared yeah, big and loud this is, this has happened to me but kind of, I'm not going to let it beat me. Was my, my new take on things. I didn't know how I was going to do that but at that early stage but I guess that was the first year or so of, of getting very self absorbed and low and then trying to come out the other side feeling a bit more in control. I think that's what it was wanting to feel in control of, of it rather than it being in control of me.
- [54:06]
A
When you were sharing and, and you know, doing the skydive and everything would you say, was that how you were sort of coping with the diagnosis?
- [54:14]
F
Yes.
- [54:15]
E
I think it was, yeah, kind of get myself out of me and because there was no other way to manage it, you know, it, it was what it was and I needed to do something, do something to, to try and change that. So there was no treatment, so what was I going to do? So I went into survival mode and try and find out everything I could about the disease. That's when I first turned, I think really properly to the Ms. Trust for the information that I found really useful there about all the sort of symptoms that I was experiencing, psychological as well as the physical ones. Because my, my neurologist, pretty blunt guy, brilliant in that he didn't spin me any yarns about how we were going to get on top of this and because I did speak to, to other neurologists who said they at least would have tried some kind of steroid treatment, but I thought, well, you know, what's, what's the point of just trying to ameliorate this if actually I'd be, I'd be just trying to find hope where, where there shouldn't be any because, because as, as my, my own neurologist explained, all that would be being done would be dampening some of the symptoms and, and at that time some of those treatments were causing more problems than they were creating solutions. So if that wasn't going to be a survival route for me, I think I just tried to get on the front foot and do what I could to keep in control of things. So it was then really that I started to really focus on keeping fit, keeping. I was already a kind of healthy eater, healthy, healthy lifestyle, lifestyle doer. Ish. You know, I worked really long hours, didn't prioritize me over other things, so I just shifted the dial on that somewhat and, and started to, yeah, keep, get an exercise regimen that meant I could keep myself fit and strong. Fortunately for me, my motor nerves have not been significantly damaged. So, you know, even now I walk. Well, no, I don't. I, I walk and part of that I put down to having kept really strong, good muscle fitness, muscle strength and to kind of use that to control some of the other, the other symptoms.
- [57:15]
A
Yeah, yeah, no, thank you so much for sharing. Have you got any tips, Yvonne, for anyone listening to this who's worried about their Ms. Progressing?
- [57:24]
E
Well, I suppose that's one of them. You know, be as fit and healthy as you can be. The Ms. Is damaging parts of your body, but there are parts that it's not reaching or hasn't been able to reach yet. So to, to Keep functioning the parts of your body that, that can, is really important. Live your life is, is another one, you know, don't, don't let the Ms. Become your sole focus. When I was initially diagnosed, I think Ms. Was four front and foremost in my mind. Whenever I was speaking to anybody, doing anything, Mississippi was here. You know, it was all I could see, really, and, and for a while it was all I could talk about as well. You know, I would have conversations with people, I would make sure that somehow I managed to get it into the conversation that, that they probably didn't know. But, you know, I'm struggling with this, this thing that you can't really see, but it's here and it's with me all the time. But as time went on and I focused on other things, then gradually it's still always with me, but it's, it's back here now and I can choose to let it in or, or not, depending on what the circumstances are. Just hang on to that knowledge that any kind of grief or loss becomes less, more manageable and less of a focus as time goes on. So that makes it easier to say, live, kind of live your best life. Live, live your life. Don't kind of leave things till tomorrow. It's a good mantra for anybody. Nobody knows what's around their next corner. And the last thing I think I want to say is don't assume everything that's going on with your body is anything to do with Ms. If we get a, a tendency to just. I've certainly did to put everything down to Ms. And I found with a lot of my bowel symptoms that, that actually, strangely, I've got colitis as well and if I'd have just assumed that to have all been my Ms. And not gone and got it investigated, I wouldn't be able to manage it in the way that I do. So Ms. Brings all sorts of new and challenging symptoms, but actually they may not all be Ms. So make sure that you seek out help from GP, Neurologist, Ms. Nurse. Make sure you've got that team of people wrapped around you. It's something you can expect to have and each healthcare provider set up should be able to, to do that. So if you haven't got those people as your sort of touchstones, it's really important to make sure that you find out how to get them.
- [60:24]
A
Thank you so much for now, so much. So many tips, so, so many different things to think about as well. So we really appreciate that and thank you so much for sharing your story with us. Today. And as well, a big shout out to you for all of the volunteering and all of the support that you give to the Ms. Trust. We really, really do appreciate it.
- [60:44]
E
Thanks. You're really welcome.
- [60:46]
B
So I am here today with Adam and Sharon, who are, we know at the Ms. Trust from an Instagram account that's called me, you and multiple sclerosis. Thank you both for coming on. Before we start, could I just ask you a little bit both who you are, and maybe you can tell us a bit of your Ms. Journey so far.
- [61:09]
G
Okay. My name is Adam. I'm 46. Soon it'd be 47. And everything was going. I was a graphic designer. Everything was going swimmingly in life. It was the whole sort of the western ideal of life, if you know what I mean, the house, the kids, the wife and all that kind of stuff. And then one day I woke up and my life had changed forever. I couldn't stand up, I couldn't do anything. And ever since then, my life has just been about Ms. Or it's not been about Ms. It's been about how to live with Ms. And it's taken me a. A long time to get there, but I think I'm. I'm there and I couldn't do it without this woman, seriously.
- [62:00]
B
And Sharon, who. Who are you?
- [62:02]
F
I'll jump in and say I'm. Who are you?
- [62:06]
G
That's my wife, by the way.
- [62:08]
F
Yeah, I'm Sharon. I'm Adam's wife. At the time of diagnosis, yeah, we were in a very normal family. We were both at work. Miss Came along and just changed all of that. And, yeah, it's been a journey.
- [62:25]
B
When you went to the doctor, was it a fairly sort of straightforward diagnose or did you have to wait?
- [62:31]
G
No, I had to wait about two, two and a half years for a diagnosis. And I was. I was made to feel like a hypochondriac. I made to feel like it was all in my head. There was nothing wrong. I would go back to the doctor. There would always be a different symptom that I would go to the doctor with the worst one, when I could hardly walk in. And Sharon was saying, right, they must.
- [63:02]
F
Yeah, they'll see.
- [63:02]
G
You'll see. They'll see something now. And that was the time where I was told, you might just be heavily constipated. Okay. So we kept going to hospital, a local hospital. And everything was just the same. Just everything was repeating. It's all in your head, all that kind of stuff. There's nothing here we'll keep you in for the night, but we'll monitor you. And then we went to another. I was going to say hotel. We went to another hospital and the minute I walked in there, the guy looked at me and said, I think you've got Ms. And from that moment on, it just changed. It just. It was. And when the doctor, the neurologist actually said, I think you've got ms, I actually went, oh, yes. And he went, you know what Ms. Is, don't you? And I went, yeah, but it's not cancer or motor neuron disease. That's what I was really fearful of. So from the moment we knew what we were dealing with or what we could possibly be dealing with, because I wasn't obviously diagnosed then, life has just got better and better and better. See, when you know what. When you know what you're dealing with. Yeah, it's easy. I don't. I don't. I don't mean it's easy. I just mean it's easy to get on with.
- [64:29]
F
Yeah.
- [64:29]
G
What you're doing, because, you know.
- [64:31]
D
Yeah.
- [64:32]
B
And it's a big difference when actually the health professional acknowledges that you. There is something wrong and this is not just in your head.
- [64:39]
G
Yeah.
- [64:40]
F
If I can just jump in. So the year was a lot of the detail, sometimes is there where dad forgets dates and things like that. So it was about 2011 and the very, very first thing was Paris. We went to Paris on a trip and Adam couldn't go up the stairs to the top of the Eiffel Tower, which at the time, it's a bit like, gosh, are you that unfit?
- [65:04]
G
Yeah, it was like five or 10 steps. And then it was really like, I can't do this.
- [65:09]
F
That was a very starting point. And then, like you said, we came back and he just continued to be unwell for. It wasn't quite as long as two and a half years, but it was about a year and a half. He continued to be quite unwell. Yeah, just like I called it man flu, really, because it just seems like he was. He was in bed and he was tired and all. Man flu, really. And so that went on for a long, long time. And the part about going to the doctor and the hospital, that was almost a weekend week out for all of that, 18 months. And like Adam said, it was just a change in hospital one night where the doctor said, I think you've got Ms. And that's sort of very short version of.
- [65:55]
G
Yeah. And I think, to be honest, if the rules were reversed, I would probably I've said the same thing to you like this. Come on, come on, pull yourself together.
- [66:06]
F
This is.
- [66:06]
G
No one's found anything. There's nothing wrong with you. Come on.
- [66:09]
F
Yeah. I mean, certainly when Adam was finally diagnosed, because in that period of time, it's such a long period of time in a family for the dad to be unwell and in bed and not working. So it was getting. Every month, every month, every month, we were like, come on, you have to. You're gonna have to just pull yourself together and try and sort of push through.
- [66:34]
G
Push through. Yeah.
- [66:35]
F
And then I ended up. That's what I was saying to him after about a year, because I was thinking, well, you know, these doctors have seen you, so someone. If there was anything wrong, they would have found it by now. So you've got to just get on with it. And when he was actually diagnosed and they said. They said, do you mind if we bring in some students, you know, to. To. To. To discuss some things with. You hadn't said. At this point, he had a mess. So they literally filled the room with all these, you know, nurses and doctors, and they said to Adam, first of.
- [67:07]
G
All, before you say this, right, I'm not proud of the story at all. I mean, I was at the beginning, but it's a funny story. I'm sort of embarrassed by it now.
- [67:17]
F
But when you go, no, because it's real life. And it's. Yeah, it's really important because I had been saying, you know, you've got to keep pushing through. You've got to push through. There's nothing. Clearly, there's nothing wrong. We've got to just keep going on it. So cut to the day where they're giving them his diagnosis and they fill the room with all the students because we're like, yeah, just bring everyone in and said, you've got Ms. And he said, oh, my God, Thank God. She's been telling me, I've just got to keep pushing through for the last and just keep going and keep going. And I was like, oh, my.
- [67:43]
G
Everyone was like.
- [67:45]
F
And obviously, for ms, that's the worst thing you can do, was to just keep pushing through. And so the ground could have opened up and swallowed me, you know, and I was just. And they all looked at me as if I was like, this terrible, horrible wife.
- [67:57]
G
Yeah. I could have walked out that hospital when a single man. I think it would have been justified.
- [68:03]
F
It just was funny, though, to thought, oh, my God. Like, oh, no. And I was like, oh, I didn't know. I didn't know, I didn't know. But yeah, that was very naive obviously way back then. And yeah knowing know now that that's like the absolute worst thing to do.
- [68:19]
G
I've always said as well and I don't know if there's many other people that think this but when I was diagnosed my first thought was I want to go into my old work and tell them I've got ms, I'm not lazy, I'm not, I'm not that I was ill.
- [68:39]
B
I totally understand that part with. Because you. I think when I was being in the process of being diagnosed, I had been feeling fatigued for quite a long time and I remember going to the doctor and having some blood tests done and they were like, congratulations, you're really healthy and you're just like, but why am I this tired? Why am I just dragging on tiredness all the time? So. So yes, I fully understand that. You almost want like a certificate and go look.
- [69:08]
G
Yeah, this is why I wasn't lying. Yeah.
- [69:12]
F
It's a really test in time though. I mean for us that was a really, really testing time because Adam was so unwell. I mean he physically couldn't stand up. And every time I would take him to a hospital or a doctor or I would think that this time, this time they're definitely going to see they can't stand up and they would maybe keep him in the hospital for the weekend and then sort of send him home again and they might, I'll come get him and bring him home on a Monday and nothing would have changed. So for, for us in our relationships, really testing time because you obviously want to believe that your partner's unwell but when you're hitting the 18 month stage and nothing's been, you know, and they've done somewhat test, maybe not all of the tests but they've started to look at some things. You're then sort of right, you know, it puts a lot of pressure on your relationship.
- [70:05]
G
If we never went to the other.
- [70:07]
F
Hospital, it would still be going.
- [70:09]
G
I think things would have worked out differently. I don't think we'd be together. I think the Ms. May have taken a few more years to diagnose. I was just left in limbo, a massive strain.
- [70:24]
F
But we're there now, we're there now.
- [70:26]
B
And now they have said that you have moved to secondary progressive Ms. Have they?
- [70:32]
G
Yeah, it was just, it was very, it was neurologist and he was looking at I think the pre, the MRIs and stuff and it was, it was very nonchalant. It was very like, yeah, yeah, Second progressive now.
- [70:45]
D
Okay.
- [70:46]
G
And it was just sort of like skimmed over.
- [70:53]
B
And how did that feel when. When that. When he said that?
- [70:57]
G
It felt as if I'm going to go downhill tomorrow. It wasn't like, listen, this could take years. This could. It was just. It was very. I felt like it was sort of motor neuron disease. Like, well, you've got this now, so there's only one way. You've got two years left.
- [71:18]
F
That's deep hell.
- [71:19]
G
Yeah, there was. There was nothing again. It was. It was like being thrown into the ocean without a life raft and saying, right, we'll swim now.
- [71:30]
B
Yeah, that must have been very scary.
- [71:33]
G
Yeah, a little bit, yeah.
- [71:36]
F
I think that's the only appointment I've ever not went to. And I can't remember that. Yeah, it was in. I remember it was in January and I was in the month of January and I was. I was working, so I didn't go. And like I said, it's the only one that I didn't go to, but. So we weren't really expecting it either.
- [71:55]
B
Yeah.
- [71:56]
F
You know, that was just unprepared. And then when. When Adam came home and said it was a bit like, oh, right, where.
- [72:03]
G
Do we go from here? What happens now?
- [72:05]
F
Certainly I was not expecting that for at least another good 10 years.
- [72:10]
G
You know, to be honest, I was never expecting it. I mean, I was expecting it, but I never thought that won't happen to me.
- [72:20]
F
But I think looking back from my perspective, looking back in the run up to the doctor saying that we had. We'd sort of stopped the erratic pattern of relapsing. So Adam's relapse momentum was highly active, wasn't it?
- [72:37]
A
Yeah.
- [72:39]
F
Life was a bit all over the place anyway, with that.
- [72:41]
G
Yeah.
- [72:42]
F
And. But in the run up to getting the secondary progressive, things had started to plateau out a little bit and it was more of a stretch, straight line.
- [72:50]
E
Yeah.
- [72:51]
F
So it's actually not a surprise now, looking back, we don't. I think. I think what I'm trying to say is by the time secondary progressive came, we were already living it as a couple, as a family. Adam was already there. We'd already had some. Some months practice, if you like. But for me as a wife, I found secondary progressive easier to manage because it's just more of a straight line rather than. It's really hard to live life when, you know, once you're up next to your dying one. Sorry, no, I was just going to say you can't. You can't have A lot of continuity with things, and you're even more all over the place. So the. This secondary rest has actually gave us stability to Then start tweaking. All right. Okay. This works. This doesn't. This works. That sort of thing.
- [73:43]
G
No, we've never actually spoke about that. About how secondary progressive made her feel. Made me feel. But she's just echoed exactly what I thought I was. Well, at least I'm stable.
- [73:56]
B
Yeah.
- [73:56]
G
At least there's no up and down.
- [73:58]
F
Yeah.
- [73:59]
G
In a way, secondary progressive was actually better than.
- [74:04]
F
Yeah.
- [74:04]
G
Relapsing because it's so unpredictable.
- [74:07]
B
Yeah.
- [74:08]
F
Yeah. I mean, that might not be the case for everyone.
- [74:10]
G
Yeah, it was the case for me. Yeah. We are completely aware as well, that everyone's Ms. Is completely different.
- [74:15]
F
Yeah. You know, so that's definitely one thing we see from. I mean, we speak to so many people from our Instagram, from all over the. From all over the world. Some people for Adam, some people for me, just, you know, carers, people with ms, all stages of Ms. And. Yeah, that's the thing that everyone is just so different.
- [74:44]
G
What I've noticed. Sorry. What I noticed was the amount of people out there that are. That got ms, that have just left themselves, no hope, nothing. And I think I'm so grateful for everything that I've got to get me. Help me, get me through this. The support of everyone in the family.
- [75:09]
F
I think just to jump in on that, that's a really key part, is to try and find what works for you, though, when it takes time to do that, that doesn't. Just diagnosed with Ms. And then the next year we decide on together. It just doesn't work like that.
- [75:25]
G
Yeah.
- [75:26]
F
You have to go through the, you know, the. The process of having to do with your acceptance and your grieving, and you're all the different. Different. The different.
- [75:37]
G
The acceptance to it. The acceptance of Ms. Came out the blue for me because I never thought I would ever accept it. I was still clinging on to my healthy self and, like, can I just go back to that guy?
- [75:51]
E
Yeah.
- [75:51]
G
And then one day, it just. I don't even know. I don't know how. I don't know what was thinking. Just one day, it just went. And that was it. And from that moment, I've never looked back. Whatever shifted in my mind, it's. It shifted and it went away. And from that moment, I've lived my life. Like, I don't have Ms. Now. I don't mean, like I'm running around like I'm a healthy person. I mean, as in Like, I know I've got ms, but I don't think about it. I know it's there, but it's not at the front of my mind, it's at the back.
- [76:24]
B
Yeah.
- [76:26]
G
So I can focus on other things.
- [76:28]
D
That's interesting.
- [76:29]
B
Do you think you started the Instagram account sort of to as a result of trying to learn to cope with, with Ms. For both of you, or was there another reason why you decided to. To document your journey as such?
- [76:44]
G
I think the main reason why we wanted to start it. Well, I wanted to start it anyway. It was because everything was just all doom and gloom. Everything was all, your life's over, you're this and that. I can't get out to the shot, I can't walk. I've got this new mobility and, you know, and I thought, well, that's not my life right now. I know it could be, but it's not right now. So why don't we show.
- [77:08]
F
Yeah, I think we were looking. We were looking for a little bit of support for us. How do families cope? You know, what does a normal day look like? Even though Adam had relapsed and remitting for some time, it was secondary. Progressives were going to bring some change. And when you're at that beginning, you don't know. I mean, it hasn't went like, you know, central progressive and then you're just going down this big hill. It's not like, well, it hasn't been like that for Adam. It's just been more of a steady. But at that point, you think, possibly, oh, gosh, we're just going to go off this cliff now. So, you know, we need to start organizing. And so we went to Instagram to have a look at how do people live day to day. Like, how do they. How do they function when they come up against any kind of problem, you know, any kind of year out and all of a sudden you've got no energy left, you know, but you're in the middle of a shopping centre or what happens when you can't get out of the car because you're just exhausted or. We just wanted to see, like, how do people function when they do it? And we couldn't find what we were looking for. I'm sure it's out there, but at the time we just couldn't find what we're looking for. So we thought, well, we'll just, we'll start a page and we'll just try and find it along the way.
- [78:20]
G
Yeah, it was, it was more for me, it was More like, what are the doctors and neurologists and the nurses and all that were saying, well, that's all great. That's phenomenal. But you don't have the disease. I need to know from somebody who lives with it how they cope.
- [78:35]
B
But sort of my last question, I guess here then is as you sort of more or less have to come to terms with it yourself. And, you know, you, You've had your, you have the Instagram account and you've been thinking about things and have you got. Have you sort of learned anything that you or any tips that you'd like to share with other people who are worried about their Ms. Progressing?
- [78:57]
G
The one thing that I say to any, what I would say to anyone who's new or diagnosed, it's going to be okay. You're going to be fine. Get to know the illness, get to know what type of Ms. You have and everything. Once you get that, it's, it, it's just a different way of living life.
- [79:18]
F
And the practical tips, if I just jump in with a practical, I would say plan for everything. I mean, I'm a planner. If you fail to plan, you plan to build that. Yeah, that's me. So plan for everything. Plan for your worst days. I mean, you might never have them, but, you know, it's well to be organized for them. I mean, I think, I think probably within five minutes of Adam being diagnosed, you know, we had a wheelchair, we had this, we had that, you know, and it may be extreme, but plan for everything. Get your ducks in a row for everything. I mean, how we work together is. Adam obviously has Ms. I have no idea how that feels. And somewhat I help to try and manage it. Almost like a business that sounds ridiculous, but you get to know, like, what is good. And then I help support Adam to do these things just to keep him so that he can stay well, how.
- [80:12]
G
We actually work, and I think it's amazing how we work. Like this is. She tells me what to do and I do it.
- [80:20]
B
Brilliant.
- [80:21]
G
That's pretty much it.
- [80:23]
B
Thank you so much for sharing your stories and, and I'm sure we'll hear more from you, but thank you.
- [80:30]
D
Thank you.
- [80:31]
G
Yeah, it's been, it's been good. I've played this also had a lot.
- [80:37]
B
Oh, Nick, so much great information in these, in, in these interviews. And I have to say this, when I put this together in the editing that both Yvonne's and Adam's and Sharon's interviews were much longer and there's so much great stuff in there, so we don't want you, the listeners to to miss out on this. We will be sharing them separately later on at some point because you really need to listen to their stories.
- [81:06]
A
Talking about later points. Helena we already mentioned that our next podcast will be talking about treating progressive Ms. Now this is something that both Yvonne and Dr. Angeliki touched on and often people who have that progressive Ms. Diagnosis don't know or aren't aware that there's treatment and there are some options available.
- [81:28]
B
Yeah, I think it was very poignant when Yvonne was saying that she thought there was just nothing for her and that even the doctors had said such a thing. But obviously this is not a true thing as there is symptom of management. And next month we're going to be catching up with Dr. Emma Tallentire and talk all about what treatments there are out there for progressive Ms. Do remember.
- [81:53]
A
If you do have any questions about ms, progressive or otherwise, you can fire any questions to us on our helpline, which is available from Monday to Friday. That's apart from UK bank holidays and that's 10am to 4pm outside of these hours. You you can of course leave us a message and we'll get back to you as soon as we can. The phone number is 0800-322-3839 or you can email us, that's askstrust.org.uk or you.
- [82:31]
B
Can come and hang out with us on social media. We are on Facebook, we both have a page and we also have two groups on there, one for people living with advanced Ms. And it was really nice to see after the last podcast how many people joined that group and we also have the the group that's just called EMS Trust Facebook group which is just one for for everyone to come and join if you are affected by Ms. In the UK. And we are also on YouTube, you can find this podcast on there and lots of other videos. We are on X, TikTok and Instagram and you can find this podcast in the normal places where you'll be listening to a podcast such as Apple podcasts, Spotify and YouTube music and please give us a like and subscribe to us so you can get the next episode straight straight into your, I was going to say your inbox, but I suppose it's more like into your phone these days and we do love it when people get in touch either about the podcast or maybe you have a short story that you'd like to share about coming to term with an Ms. Diagnosis. Do get in touch with us either via social media or you can email us on commsrstrust.org UK and now it's time for us to say bye bye and we'll see you next month.