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Hello and welcome to the Neuro Transmitters, a Clinical Neurology podcast. Uh Looking to help people with their neur a phobia. I am joined today by the host of uh oh, gosh, I was going to say Life with FND, but that's, that's your Twitter account. That is my social media. So, talking out about the podcast. Excellent. Well, thank you so much for joining us, like so many people that I interact with in the Neurology Neuroscience space we met on Twitter and we kind of had some uh coinciding interests in terms of functional neurologic disorders and I appreciate you coming on to talk with us a little bit about that today. Well, thank you very much for having me. It's going to be wonderful. I can feel already. I'm looking forward to it. Absolutely. So, so please do tell me a little bit about kind of how you initially what, what led into your diagnosis and kind of how did things start out? Okay. So for me, um so I'm a trained primary school teacher. Um and I was, you know, living my best teacher life until January 2020 19 and 2020. Wrong year, 2019 and I got a really bad case of laryngitis. Um, I lost most the ability to completely, not because of FND, just laryngitis. It knocked me out. I was off work for about three weeks. Um, and they, the doctors were coming a little bit concerned because it's been three weeks. I still don't have my voice back. Like something else is going on. We'll run some tests, like, fine, go for it. Um, I had blood tests done on the 30th of January 2019. It's weird that I remember the date but there's a reason for it. Um And I walked to work because the doctors was just around the corner to hand in my sick note because they signed me up for another week. They were talking about maybe it being Lyme Disease, all these other things, they weren't really too sure. Um, and walked into worked hand in my sick note because I was being stubborn and I refused to not walk into work and give him my sick note. Um, and I collapsed on the floor. Um I then proceeded to have multiple, um, what looked like seizures um, in various places across the hallway of the main office of the school. I worked in, um, the first time I'd ever seized. Obviously, there was a, there was a fair bit of panic around that because they weren't expecting me to have seized. Um I don't think you ever really expecting it, but it was so unusual. Um, I ended up being taken into hospital by ambulance. Um, having continued to see, I think I was seizing on seizing on the floor for half an hour, an hour. I was down quite a while. Um, they had to bring the ambulance. I remember them bringing the ambulance on to the playground to get me out. And I refused to get on a bed to get into the ambulance. I couldn't walk and I was still shaking quite a lot in tremoring, refused to get on the bed because I was worried the kids would be more scared if I was on a bed. So I walked, I say walked wasn't really a walk. It was some sort of weird hobble thing um, to the ambulance and got admitted and I had lost my walk from the 30th of January 2019, those seizures kicked out. So I lost the walk. I was discharged from hospital the next day, still unable to walk, but they kind of didn't seem overly bothered by that. I was still tremoring. They didn't seem too concerned. They sent me home. They're kind of like, yeah, we'll be fine if you go. And then within a month in the next month, I'd continued to have seizures. So ended up back in another hospital which is where I came across from my first neurologist, but we'll come onto him later. I'm sure I've got a fun story about him. Um My first neurologist at that point, um, they still haven't scanned. I hadn't had an MRI, hadn't had any tests or anything. They were just kind of, yeah, you can't walk okay. Sure. Um, within February, February of 2019, I'd lost the ability to speak. Um, so another Russian hospital by ambulance because they were, like, all may be having a stroke. They weren't really sure. And then within the next month I lost my cognitive abilities and I entered a pretty much permanent associative state. Um and that was pretty much the rest of my 2019 was in that dissociated state. That sounds awful. It wasn't the best year. But yeah. Now, now, I mean, when you first went in that the first time for just, just a day, now you mentioned that they weren't particularly worried about your, your ability to walk or talk. But did they give you an explanation as as to why or you were thinking? No. So when I had collapsed at school, so I ended up going in that day, they admitted me overnight. Um but no one, no one commented on my walk. I was still speaking fine at that point. It was just my walk. It just looked, I looked like I was really really drunk slash had an accident. So I was I was really not, not a normal walk in any way, shape or form, but no one seemed to be overly bothered by it at all. No. One commented on it. No one went, oh, hang on this, this isn't right. So it was just kind of left alone. Um, when I went into hospital the second time at the beginning of Feb. So literally like less than a week later, um That's when someone sort of went, hang on a minute, your walks, not what we would expect. And that's when I came across my first neurologist in that instance. So to begin with, they weren't bothered by the walk. The walk was apparently fine. Okay. I know from my own experience that in hospital, many physicians do not actually assess the the gate, the walking of, of most people. Uh Was that, was that also your experience there? Um So the one in that was in, in February, um I was in, I was in because I had seized again, I'd seized, I ended up going to stay with my parents. I'd seized on the bathroom floor. I then ended up going to see like an out of hours doctor. I'd seized again with them straight in an ambulance straight. If you go, it was still seizing in the ambulance, sorry, swallow the wrong through the wrong help, apologies. Um And then I got seen by a neurologist and all I can remember is him and I know there's, there's probably an actual name for it, but he examined me on the bed and he asked me to lift my legs up and push against his hand, um, before I had collapsed, like, literally two weeks before I've been in the gym six times a week. I was lifting weights. I was really active so I hadn't lost my muscle kind of tone just yet. It was still quite strong. Um, and I could, I could out Muslim and he was like, oh, no, you're fine. You can outmuscle me. And I remember sitting there being like, if I can outmuscle you, why can't I walk? Like, surely there's yes, you're saying I cannot miss you when I'm lying down, but I can't walk. So there's something going on here. Um, but I was to kind of focused on the fact that he, he seemed to be suggesting that, you know, I was making it up. Um, and it was all in my head and therefore I just had to get on with it, um, to kind of have that conversation in that state with him. Um, and then I was seen by a physio who unfortunately had the same sort of opinion of, well, you're choosing to do it. I was like, there is no part of me that has ever chosen or will ever choose to walk. Like I've had an accident in my pants. It's not something I aim for in my daily life. I don't, I'm not doing this on purpose and she, she just couldn't quite comprehend that I wasn't doing on purpose and that I didn't understand. I wasn't walking normally because that was the other thing I didn't know I was walking with in my head, I was walking normally. Um So she was like, well, you're choosing to do it. And I was like, no, I'm just walking. This is how my body wants to walk. As far as I'm concerned. This is normal. When you look at the videos of me walking, you can very clearly see it is not normal in any way. But at the time for me, I was like, this is just what my body wants to. It's walking this way. I feel like this is normal. This is, this is me now I'm walking. Um So yeah, it was, it wasn't the best experience of professionals the first time around bidding with that. So, so obviously, that wasn't particularly fruitful. Um No, but, but where did, where did things go after that? Um So after that, I, when I lost my speech, I couldn't talk, I obviously went back into hospital. I don't really remember what happened then. Um But I don't think much happened to be fair. They ruled out a stroke pretty quickly. I think I was sent home, basically unable to walk or talk at that point. Um And then when I lost my cognitive ability, that's when. So we actually ended up going private for a neurologist at the beginning because I wasn't going to get seen for like nine months on the NHS. Um And at the rate I was going, I was going to end up with nothing left. I was losing, I was losing something every month. So quickly I was going to end up being completely bedbound. There was no way I was going to wait nine months and not have been a more serious state. Um, so we actually went private to just try and work out what was going on. I know my husband was very concerned that, you know, we had no idea it could be a brain tumor, like it could have been all of these things and no one was really talking to us. Um, it was a very scary time for them. I was living my best life in associative state. So I had no, not Scooby what was going on. Um, I was just loving life and living my best left and we went private and they, the doctor that I saw assessed me and was, was nice about it. He spent like an hour with us, which is quite unheard of really over here. You don't really spend that long with people when you're in the doctor's office. It's like 10 minutes soon done. And he said, oh, it's this FMD thing. And I remember sitting in the car coming home because we had to travel like an hour and a half, two hours to go and see this doctor and my mom was with us and I sat in the car and all, I felt was shame that I had this, this thing. I didn't understand it. I didn't, I didn't really get what it was but I felt so much shame around it. Um, and I think he'd explained it really well, he said it was a software problem. It wasn't hardware. Um, and he hadn't said anything that, that some people have had when they've had the diagnosis of FND. Like, oh, it's all in your head. You're making it up, you're faking it. He, he delivered it in a nice enough way. But for me, it was, I just felt so ashamed of myself that I had broken and my brain had broken and that was on me. Um So yeah, and then ended up under another neurologist in the NHS and under various other people as I moved through different treatments. So, whilst my first experience wasn't the best. Actually the one that actually gave me the diagnosis. I'm really glad he gave me the diagnosis. Not the first guy. That's fair. So, yeah, so going to a private physician can be obviously expensive outside the NHS. Yeah. So was this just a one time consultation or? Okay? Yeah, it was, it was just because I was, I was going downhill so quickly. Gotcha. Like there was just no stopping it. Was this based, did he make this diagnosis based off of like the video recordings you had of your gait or the seizures or what have you? So I remember being sat in this office with him with my mom and my husband and he refused to speak to my mom or my husband and he only wanted to talk to me and I thought was really weird because I couldn't speak properly. So I was stuttering, I couldn't get, I didn't, I wasn't talking normally in any way, shape or form and he was insistent on talking to me and only me and it took me forever to get it all out because I couldn't, I couldn't speak properly. Um But I don't think we had any videos or anything. Not that I remember. Anyway, he was just insistent on talking to me and then he did the same exam. The first guy did where he laid on the bed and he asked me to move my legs and that caused the seizure to happen. Um So yeah. No, I don't think I don't think he'd seen any videos of that because you could see my walk. I was in front of him not able to walk. I got you. So there was no meat. Yeah, he had it in the flesh. You didn't need a video of me doing something weird in my house. You could literally see me stumbling around the place with my walker um desperately trying to function. So, yeah. Gotcha. And obviously that's a big diagnosis to take in. So were there any any guidance after the consultation in terms of what next steps were. So I don't know whether it's a process of what you guys do when you diagnose it. But quite often here you get given like a leaflet and you get given a website that the neuro symptoms dot org. Yeah, you might get a leaflet. You don't always get a leaflet. You get a leaflet if you're lucky and you get neuro symptoms and then you're sent in your merry way. Um I would say some comparable similarities depending on what part of the country. Yeah. So yeah, it was very much. He explained it all. He answered. I think he probably answered a couple questions from my mom and my husband, but I was, I think I was just there in complete shock about what was happening. Um And then any other information came from my mom and my husband looking it up trying to read medical papers. I remember the husband giving me a paper at one point and going, oh, you should read this. And I'm like, dude, I don't know what the word that is like, I can't, I can't decode a medical paper right now like I'm not medical anyway, but I don't stand a hope in trying to decode what this is trying to tell me. Um So yeah, it was neuro symptoms and then any other research that my family could get their hands on. Really? So, yeah, we're kind of left for a bit to fend for ourselves. Well, they did. So, yeah, in that, in that interim, like for most people, you know, I know receiving the diagnosis doesn't necessarily change the clinical manifestations of what's going on. Was that your experience as well or did you have any changes in your symptoms after that? No. So I then I'm trying to, I'm trying to remember the time. It's a bit blurry for me because I entered this dissociative state. I've got big blocks in my memory. So I'm trying to piece it together. So I think it was the walk the talk and then that, but I think potentially I've just gone in to see him before I entered the truly dissociative state. But it must have only been by like a week or so. It wasn't too far away or I was already in it. I can't really tell, can't remember which probably tells you enough without me actually having to give you an answer. And, and then at some point I entered that state more permanently and then that was me for the next 68 months. So you bring up an excellent point. You know, there's this, this element of dissociation, right? This bodily autonomy from like kind of your volitional will if you will. And I know that's, that's a very different experience for many people. But I mean, if it's not, not too uncomfortable, would you mind talking a little bit about what you do remember from that time? Big empty blocks of blackness. Um So what I, what I know is because my husband has recorded it or we've had conversations is I entered the state basically a five year old. Um So I, everything reverts to being five. My interests, my vocabulary, food, choices, things I interact with. Everything goes back to me being five years old and it, it's kind of, it's like a, an alternative. I can alter ego kind of comes out and takes how you have for me. And at some point because I still do enter the States. Now, it's like a like I don't how to describe it. You know, I'm like in theater. Sometimes they have the stages that flip around it. On one side, you've got one scene and on the other side, you've got another scene and they can rotate it. That's kind of what it felt like in my head. On one side. I had the me that you're now hearing. Yeah. And on the other side, I had this associative to me the five year old and sometimes I could flip them around. But when I more pump you entered that state, there was no, there was no window through, there was no, there was no turning it, it was like stuck on. Um And I don't really remember much of it because the memories weren't being formed at that point. I was just in the moment like my, I was very much in the flight mode. Um like my husband would try and make jokes thinking it was funny at one point he told me there were goblins up the stairs and in my flight mode I was like, oh, my gosh, there are goblins up the stairs. I can't go near the stairs because they're goblins. I mean, someone's gonna eat me. Um, it took a while to get over that one because he hadn't quite realized I was paying attention to what he was saying. Um So that was a fun one. But yeah, it's just, I have odd memories of it, but it is like another person took over my body for that time and I was, what I was doing wasn't me. I don't know how to describe it really. Now, I thought that was an interesting analogy with like this stage flipping around. Uh Do you feel like your, your adult itself was, was kind of like behind that wall watching things like as the younger self was sometimes, yeah, sometimes, sometimes there was always like a little window through and like in my head, I can fully, I can picture it happening. There's like me poking through this little hole, this little window trying to like see what the other one is doing and it would, it would go the other way as well. And like sometimes like the younger me would like bash on like that wall to be like, I would need to come out. I have something to say and it would, like, flip. It was a very weird feeling and though, when I first entered it, there was no way I was flipping background really at all. Um, but now kind of a couple of years in there were points where I was like, oh, hang on, like the other me wants to say something and I'd flip into that state. It sounds a little bit weird. It probably is a little bit weird. It made sense. It made sense like, oh, hang on, like the other meds got something to say and I'd like, flip across my personality would change for a second. And I'd have this alternative me come forward and bring forward a memory that I had suppressed or whatever it might have been. Um, and then disappear again when it felt like it said, it said it's bit, it like stood up, said what it wanted and then disappeared again. Okay. So, yeah, but there was a couple of times when I was in that more permanent state that something kicked the old me back in. But I was only there for a couple of minutes and I know my husband said that we were sat on the sofa one day and having quite serious conversation and the old me kicks back in to say like no or say something. And then, because he said my name and he kept saying my name to get my attention. I went away again because my name was a trigger. Okay. So, I lost it because my name was being said. So. Yeah. Interesting how the brain works, isn't it? Yeah. It's very surreal sounding. It's slightly odd as well. Yeah. I always feel like I should pre face it with. I'm not crazy. I promise. No. Right. I mean, that you bring up a good point there though. A lot of people do get that label slapped on them, um, during these types of episodes. Yeah. It would be all too easy though, wouldn't it? If you're someone they're talking about how, you know, there's a five year old in their brain that comes out and says stuff you're like, oh my God, you are a bit bonkers, but it's just the way that my brain dealt with it. Yeah. So I just kind of have to manage the weirdness of that brain brain work. Yeah. So you, you went on in this state for months and obviously that must have been very challenging for, for you, for your family in particular. I was not going to lie. I was living my best life. I was completely oblivious to what was going on. Um I was just as you would imagine a typical five year old would be, I was very much like Disney cuddly toys, coloring. Like the normal behavior of five year old would exhibit was how I was. Um So, but for my family, absolutely, I'm sure it was, it was terrifying and to watch me in that state for so long must have been heartbreaking. Um, I just don't really remember it and I think I'm quite lucky in the fact I don't really remember it in that respect. How did they proceed from there? Obviously, you know, they were, I'm sure quite concerned just a little bit. So, how did they progress or what kind of help do they seek out to get, get you? So, I, having gone private, I then went back across the NHS and got to see an NHS neurologist. Quite lucky. I'm asked to be on over and he confirmed it just for the NHS side of it. And then he said, right? OK, we're going to do uh Harmon voice. He basically said like, oh, we're going to try different things and see how we go. But he put me. So I ended up staying in one of the bigger hospitals, like an hour and a bit away from me for a week because he wanted me in for intensive physio. So I ended up in there. Um at one point, no, wait, how I'm mother in my timeline. So I don't think I was in the associated estate when I was in there, but I was definitely not far off it. Um because one of the women next to me told me she didn't have a belly button and it blew my mind and I couldn't comprehend how she didn't have a belly button it completely through my entire hospital stay cause I like what you don't have a belly button and she showed me as well to try and prove it. And that just made it more confusing. Um Sorry, it blew my poor brain. But yes, so I ended up in there for a week for like intensive physio and then I ended up, yeah, that was before I was truly in the state. And then within a couple of weeks, I ended that truly dissociative state. Um And he was like, right, we need to do something like now this is, this is not okay, this is escalating too quickly. And I ended up going into a three week inpatient stay, another hospital which is like an FND unit. I know quite fortunate. And he got me in there because I was just going downhill so quickly. And I remember him being on the, I think my husband had had to phone him because I was doing something really weird or something something had happened and he phoned him went, what are we meant to do? And I remember him being on the phone and I was in my bed and he was on the phone and he simply asked me, do you know who's in the room with you? And I remember sitting there being like, no, I don't, I don't know who these people are and it was my husband and my mom and I had no recollection of who they were. I lost it all. And he, that was when I ended up going in for the three weeks day and I had a psychologist, a physio ot, um, and stuff like that in that three weeks day. But unfortunately because of the state I was in, it wasn't as beneficial as it could have been. Um Because my memory, I had such a short time, I literally have like five minute memory. Um So II, I couldn't remember what they were telling me to do. I couldn't remember who anyone was. I didn't know who I was. Um I met a friend, I met someone there who has now become my friend and she ended up taking me under her wing and having to introduce me to people because I didn't know my name. I didn't know anything about me. So she had to be my, she kind of took on that role for me because I, I was, I hadn't got Scooby Doo. I could have told people my name was Bob repeatedly and I would have been completely convinced it was. And then it kind of went from there really. And then after that, I received physio, speech and language and a clinical psychologist when I came out, obviously, that took time to get through. So, yeah, I've been quite fortunate in my experience and the fact that I have gained quite a lot of support, I've had quite a few people in my corner doesn't make it any easier, but I have had quite a few medical professionals be on my side and try and help. So, yeah, that's excellent. That felt like the quickest I've ever told that story. Well, you know, tell it enough times, right? Get the pattern down. I still can't get dates, right. But I've got the general idea of it. That's fine shape of the story. It's roughly a triangle. It's fine. Now, obviously, you went through a lot of different treatment modalities through this period of time. And that's, that's part of the challenging part. I think uh with FND is figuring out what works for, for one person versus another. And now I know obviously remembers a little fuzzy from that period of time. But from your perspective, what kind of treatments did you find the most effective distraction therapy? And what for uh for our listeners who may not be familiar? Uh And myself? What, what does that look like in the moment in the moment? So the, the one I can remember and there's, there's videos of it somewhere. I'm sure I've shared them over my time. Um It was in my first stay in hospital for that week when I had the intensive physio and they had me doing all sorts of random things because I was still with it. At this point, I hadn't completely lost, lost everything. Just my walk and my speech was a bit funny. They had me in later. Physios, it was like playing hockey, which sounds really weird, but an attempt at playing hockey or playing football or doing like an obstacle course. And I don't mean, like an army one where you're like, up a giant ladder. I mean, like in a physio room and to be fair to the guy, he'd never, never worked with any FND before. So I was his first little guinea pig if you like. Um, and he was like, well, from what I've seen, actually, the more focused you put on it, the worse it gets. So we're going to go completely, completely away from it and we're going to do hockey and football and, um, you know, but overall that was the thing, especially the most in terms of like my speech, my speech still fluctuates now. Like, currently I'm on a good day. You can understand everything I'm saying. But if you've spoken to me, like, 23 days ago, you have been like, ok, I'm really sorry. But what did you just say? I haven't got a clue. And I refer to like, using like sign language out for a bit because my speech is that level, you can't understand me. Um, so for my speech side, it was actually singing, sounds really weird. Um, but yes, singing Disney songs apparently for me feel like I'm showing so much, you're learning so much about me. It's such a short period of time. I've done similar exercises for people with speech. Actually, I did it just, this last week I tried to get someone, uh, to sing the Happy Birthday song with me. Didn't work super well. But it was, it was day one, you know. So, yeah, I think it's, it's for me, we, my husband and I were in the car going somewhere and we had on Disney songs because that was my life at that point and a song that I knew really, really well came on and all of a sudden I sung it in my normal voice. I remember my husband turning to look at me and like being like, whoa, you just did that. Like, I hadn't spoken normally in months. And then all of a sudden just for that two minute block I sung normally as soon as the song was done, I don't, can speak again, but for that two minute blocker could do it. Um So yeah, the power of distraction for me was really helpful but it doesn't always work for people. I think it's a bit of a, it can be a bit hit. MS sometimes I have anecdotally noticed, noticed that same thing, uh, in, in people I've been taking care of and it does seem like, like you said, some, some activities, um might be better, you know, like, you know, there's always all the physio activities with like balloons and stuff like that. You know, if they have like arm coordination problems, things like that, or even cooking a balloon. I know. Sometimes it's something they'll do just to keep it off the ground, you know. Yeah. I think physios just like the most random object in, I swear that, I swear it's like a challenge. It really, it's very, it's very strange and I wish I understood it better myself in terms of how they come to the, the determination of, like, this is an activity. We should try. This one probably won't work. I have no idea. It seems totally random to me. But, you know, you're like, why is that person just blowing a balloon right now? Right. Right. And yeah, so, so that is, that is very interesting. So, so they give you like home exercises to do and things like that as well. Um, I mean, they might have done, but I couldn't tell you what they were. I know that we just focused on having fun, which sounds really weird, but we just focused on having fun and being happy. I say we, the husband did. Um, and it was, it was just actually what makes her happy right now, what makes her happy is watching a Disney film or going and seeing horses that became a big part of my kind of recovery was seeing animals and being just odd. So moving through that dissociative state, how, how did you get out of it? I don't actually know. Can I lift? I, I honestly couldn't tell you um, lots of therapy, lots of talking about stuff, lots of just trying different things. I don't think there was probably a day where we didn't try something different just to see if it would help. My husband learned that there was a pattern to when I would come out. And that sounds very strange. Don't mean it sounds strange when the me you're currently experiencing would appear normally centered around a really serious conversations. I would come out to interject and be like, no, absolutely not. And then I bugger off again because I was like, no, I'm done. I can now. It's fine. Um And I think gradually I just came in for longer periods of time and instead of being in for a minute or two, I'd be in for maybe 5, 10 minutes and it just very gradually built up to. Now, we're actually, I'm more in the, I'm out. Um We kind of, we call it potato owing and we have four stages of potato, potato. It sounds, it sounds really strange. I'm intrigued. You're, you're now thinking you're now going. Oh my God. Who have I got on my podcast? I shouldn't have been fighting over. So there are four stages to my potato owing. So stage one is what you're currently getting now, which is me being completely fine. Stage two is when I maybe have started to show signs of my walk going or maybe my speech, but not the two stage three is when I got walk or talk has gone and my cognitive skills have declined. And then stage four is the big kahuna where it all goes to pop. Um, and that was how we gauged it. That was how we, we worked it through. Because when I was in stage two or three I could ask my husband and say, well, where am I? Am? I here? Am I not here? Like what's going on? And he'd say, oh, you're at two? Okay? Cool. Oh, you're at three and I'm like, okay. But if I'm in stage four, I won't even think to ask the question because I'm too far gone. I'm thinking about Daisy's and lollipops and chocolate. I ain't got Scooby Doo. So it was a way we dealt with it. How do four stages relate to potatoes? Because I love potatoes. Okay. Very simply because I love potatoes and when I'm, when I'm in that state, all I want to do is eat. Um, so I can have a full roast dinner and then 10 minutes later be like, I'm starving. You've not fed me. I need food. Um, so because of that, we named it Potato Owing and it sounds slightly nicer. Yeah, it doesn't sound as bad when you say always just have potato and it's fine. Gotcha. Gotcha. Okay. No interest. It makes sense in our house. You know, I, I like that. Um Now in terms of like the therapy side of things I know what you said is like lots of different types of techniques and strategies were employed. Um And I know things might be a little fuzzy early on, but as things got better, were there any any techniques that were used more consistently that were more effective in your particular case? Um So what I would say that I found really, really helpful, not just for me but also for coming from it, from the psychologist side because I did a timeline, okay, I made a timeline of my life right from before I was even conceived all the way through to the day I wrote it and I put on there, everything um I put on there like the house I was in, I did floor pans. I did what school I was in what age I was in like I did everything in like nitty gritty detail just quite astonishing when you think I didn't have a memory. It's quite impressive. But this was, it was made up of I think six sheets of a three paper stuck together. Um So that was the level of detail that I was going into. Um And that in my psychology side was so incredibly helpful because it meant that actually the psychologist and we still, we still use it today. I still see him, he's able to dip into it and he'll go back and he'll go. Oh So at this point, there's this memory, can we talk about this and it's on the timeline. So I know where it is and I can place it. And we've had more recent conversations about how actually I'm able to do that because they're all flashbulb memories. I think I phrased that correctly if I haven't, I've butchered it. I'm so sorry. But they're all flashbulb memories, which is what I can place them. But even if they weren't flashbulb memories, actually to have that timeline is really helpful. Like, is it having that history when you first meet a patient? You need that history, don't you? And actually that was my history on a sheet of paper or six sheets of paper, sheets of paper. But it gave a really good overview of my life from beginning to where I was. Um I think he said to me a couple of times like, actually, it's the most helpful thing because he can dance through my life quite easily on it and he can pull things out. He's like, oh, we haven't explored that. Let's talk about this and things like that. And it just helps to kind of give it a bit context. Interesting. Yeah. Does that make sense? Kind of making your abstract memories and histories like this concrete physical object? Yeah. And even then if I'm in a state where I can't place it, he can put that in front of me and say I want to talk about this memory here and that will be enough to prompt the memory back for me. OK. So it's a prompt in for me to then remember what, what I was actually talking about when I wrote it down? Fascinating. Um So yeah, it's quite, it's quite, it sounds really weird when, when you say out loud. No, no, but it really helps. It almost sounds like kind of like a physical representation. Like you're feeling like the concept like a mind palace, things like that. Yes. Yeah. It sounds almost like like a physical version of that but specifically related to like your life and experiences. Yes, completely. Yeah. But it was just one of those things where I think he asked, he asked to do it on like a bit of a win thinking, oh, I might get like a sheet of paper with like a rough like lived here. Did I was this age? Did I don't think he was expecting six sheets of a three paper to come back in, in the level of detail. But actually, it's been so helpful. So for me that was really, really helpful in the psychology side to have that to refer back to in regardless of what state I'm in. It's there. It's concrete in front of me. I can see it, I can see the house I was in whatever it might be. I drew floor plans of stuff that was important. It takes me back into it and then I can talk about it because I'm in it and then I can process it. Gotcha. And I imagine that required a lot of work in terms of it. Right. So, I mean, that's like people talk about the quote unquote work of doing therapy. Yeah, this is what they're talking about. Right. Yeah. Yeah. It took us probably a week that was very intensive. That was, that was us phoning around different family members talking to different people, really trying to compile it all down in the best way we could. And I did it alongside my husband to try and get as much information onto that, those sheets of paper as we possibly could to make it, make sense and to be able to take it forward and regardless what state I might have been in, I knew what was being referred to and I could, I could then talk about it from there. Very interesting. Yeah. So that, that was really helpful from that side for me. Very neat. And, you know, so I think you kind of mentioned in passing, right. This, um you know, a lot of people with FND of different types, they go through these different, you know, physio and psychology, psychologic therapy protocols, but it's not necessarily kind of a one and done situation. Right. No. Oh, absolutely not. I think it's, it's one of those things where what I've learned across working with different people for the FND is that actually I've got that toolkit, that's all box. Every person has given me a different tool that I can put in there now. And sometimes I need a hammer or I need a spanner and sometimes I don't know, have Scooby doo what I need. But I've got something in that I can try. And if it doesn't work that day, I don't throw out. I try again the next day and it's a shared box between like me and my husband and my family. We can then dip into it when it's needed because I'm not aware when I enter the dissociative state, I'm just living my best life. I don't know. So they've then got access to those things as well to help, try and smooth back over there is not going to be just one thing that fixes it. Unfortunately, as much as it would be great if there was just a pill or something you could take and it would just fix it all. Unfortunately, that that's not the case. But what you can have is you can have all these different tools in your toolbox and you can call on them at different points to try and help you move forward. So like for me having that timeline was really helpful. The distraction therapy, music, horses being outside, like all those things don't seem to be, wouldn't be your normal, I'm doing air quotes, your normal things that you might have in your toolkit. But for me, their what works, you've just got to go through the process and it is a hard slog of working out what's going to go in there and what actually you can't put in there anymore. Right. So, it does sound like kind of a lot of trial and error. A lot of persistence, both from you and your treatment team. Yeah, I believe the word that was used to describe me multiple times was I was stubborn. I'm one of those. I was just really stubborn and I just wanted, I figured, why not? Like I got over the shame and they get what I felt right at the beginning. It took me a while, but I did and then I just felt this determination and stubbornness that actually I was going, I was going to get through it somehow. I wasn't necessarily aware of that, but I, I let my inner stubborn come out and that was quite regularly said in appointments actually that I need to stop being so stubborn and I needed to rest more. Yeah. Yeah. But yes, it has its place I write. It's another one of those tools. It, but apparently it was my main tool at one point. Yeah, just hammering everything into the wall, just hammering everything in the hope that it would work. But, you know, it's fine. Now, now going through like, you know, you could, you been on this treatment protocol for what, a year or two at this point? Uh, so what, when I had gone into the unit and stuff all the time line part. Yeah. So, yeah, year or two at that point. Yeah. So, so how, how is life on a day to day basis? Now, now that you have, like you said, accumulated some tools in the toolkit? Uh I've got more than just a hammer. Yes. Yeah. So, like I, I know you mentioned that you were a school teacher. Um, and you, you had gone back to work for a period of time if I remember correctly. Yes. So I actually, so there was a long, long process, but actually, so February 2020. So literally a year after I had first collapsed and lost everything, I went back to work. Um, and I went back to work in the office. Um And I did like three hours every other day, um because I couldn't hand anymore. Um And then I gradually worked my way back up. Um So then I would be like a ta so teaching, teaching assistant. Um And then come September 21 I had my own class again. Um It was short lived unfortunately. Um But I did get back to the classroom. Um And I've maintained that being in the classroom, I've just done it to a different point at a different level. Um And I, yeah, so I did, I did get it back. It just looks different and it was a hard slog and I thought very, very hard to be allowed back into work, let alone anywhere else. And I had to conquer my own demons if you like of being in because I was scared of Children. That's not helpful when you're a teacher. I was scared of Children. Not gonna, I didn't know my own name. I didn't know anyone else's name. So I had quite a few hurdles to overcome. Um, just on that first, that first point of going back into being in the office. Um But yeah, I kind of, I did get there. It's taken, it's taken a while. Um, but I did make it back in some form or other um with not just a hammer with many other tools. Yeah. So yeah, now was the goal ultimately just to, like you said, conquer those, those demons or was it to, to like return to work full time? Like, um I think it's never been discuss that I'll go back to work full time. Um Even now it's not really talked about because I still get fatigued. I still have my symptoms still flare. Um So being back full time is not something that's currently on my radar. Um, which is, which is fine because I don't think it's the right move for me right now. Um But my goal at the time when I went back was just to have some semblance of normal and just to feel like I had a bit of something about me again, I'd lost so much, I've been through so much. I feel like I've really lost who I was. I didn't remember who I was before I got sick and I was desperately trying to find anything that would clue me back into who I was. I felt like I was trying to recreate myself but not knowing what I was recreating myself from. Um So even now I have very vague memories about my life before FND hit because I just haven't come back yet. I'm waiting, I'm waiting patiently. So yeah, it was more, I was just tackling the problem at the time. The problem was I was scared of kids or I don't know my name or I couldn't stand up for more than 10 minutes at a time, whatever it was, I was tackling it very much in the moment in hope that it would get better. Um So yeah, with maybe the ultimate aim of going back into class, but it wasn't on my radar for a good couple of years. Um But it was there kind of in the background maybe as a ***, we thought that I might at some point do it but it was never certain. It was never guaranteed to understand that. Yeah. Yeah. What are your goals right now? Oh, my goals right now to be a functioning human, a good goal for everyone. I think that's a great goal not to eat all the snacks and I have no, my goal right now. So I've just finished work. So I just left the place I was at. Um, my goal right now is just to figure out what I want to do. I've tackled some quite big hurdles with the FND. I've, I've jumped into a couple of lakes metaphorically to get over stuff. I've, you know, I've done all that stuff and now I just want to figure out who I actually am, uh, with the FND and more of the back burner. I think now I've got a bit of a better handle on it. It's never going to fully go away. I don't think, I don't think it ever does. Is that something you would agree with as a neurologist? I, I would say that there's a fair number of people. I mean, it never goes away 100% but even if the symptoms do resolve a lot of people do have episodes that breakthrough from time to time. Yeah. I think that's, I've got to learn who I am now without that being such a looming shadow over. It'll, um, and just work out. What do I actually like? What do I like? What don't I like? And what actually makes me happy, but it's such a big step to take and I want to continue, like, raising awareness, doing the podcast, doing my social media stuff because I think it's important. But I don't, I, there's not really a concrete plan for me right now. It's just, I'll see where I end up and hopefully I'll end up in the right place. And if I don't, then I'll bury my head in the sand and pretend it wasn't, that wasn't bad to happen. It'll be fine. Yeah, I think, I think we'll do a bit of that from time to time. I'll just become an ostrich will be fine. No one will let you go. If, uh, if you had to give any advice to someone who's, who's working in healthcare, who maybe isn't familiar with FND or someone who's in training. What, what are the things that you, you found most useful or you would say definitely don't do this either. Either one I could do both. Okay. So for, let's start with the positives. We're human, we're not, we're not just a sheet of paper. We are human. We are scared and we don't know what's going on either. I think there's, there's got to be that empathy there. You may not fully ever be able to emphasize with our position because you may not have ever been in that situation. But you can emphasize with the fact. It's really scary and actually there's a lot going on and our whole life has just changed. Um be aware of how you communicate the diagnosis to people, try and avoid phrases if you can, if it's all in your head or you're choosing to do this because they can be so damaging. Um And I had that with the first neurologist I saw, he said it was all in my head. I could just got irrationally angry at him because I was like, no. Um and to be fair, it fueled me. I've used that to drive forward and get better, but it's different for every person. So yeah, I just say be aware that there is a human you're communicating with, have that empathy. Um be careful with how you deliver the diagnosis and also don't be afraid to put your hand up and say actually, I don't know, like people are going to be unreasonable with you if you don't know. Well, we don't know either so we can, we can not know together. Um I think that's honesty is the best policy in that respect. Like you don't have to pretend, you know, all the answers with people will be quite happy if you say okay. I don't know right now, but I'm gonna go in, I'm going to find out for you and I'm going to come back to you like that is that is perfectly fine to do. That's an excellent point. Well, I just think everyone's so head up on. I have to get it. All right. I'm like, no, you don't. If you put your hand up and say that you don't know right now, I'll go find out like fair play. That takes a lot of courage to stand up and do that. Like I'll respect you for doing that because you've been honest with me and I don't know. So we can be in that space of not knowing together and work through it together. Um You can learn from me and I can learn from you. It's not just I have to learn something from you all the time. We can share that learning experience. Um I'd say if you're working with someone F with FND as patient be on their recovery train, actually step onto the train with them. Don't like stand on the station and wave at them fully get involved. Like if you're a physio and you're telling that person to play hockey or do an obstacle course, do with them, why not? Like they're having to do it. So get involved, do it with them. If you're asking them to sing, Happy Birthday, Sing Happy Birthday with them. Like if you, if you're not willing to do it yourself, then why you're asking someone else to do it? Like, just have that degree of like, okay, it might look silly. I might feel very embarrassed, but then that's probably how the patient's feeling that I've just asked to do it. So you can kind of do it together and feel silly together because why not? You can then be on that, on that together, I think. Yeah, being on the, being actually on that recovery train, not hanging out the window and let the person know you're on that side like, you might have disagreements about what you might do next, but you are overall on their side, you're not doing it to fight against them. You're doing it to work with them to drive the car with them not to crash the car. Does that make sense? Yeah. Ultimately. Right. We want people to get better and, you know, they want to get better. Yeah. Exactly. And I think it's just having that open line of communication and if it's not working, say, you know what? It's not working, I will go back to the drawing board and I'll come back to you and that's okay. Um, but yeah, I'd say, don't tell people it's all in their head. Do not do that. Yeah. It's a bad move I've seen and maybe you or people, you know, have also experienced this where there are some people who just like, they seem very uncomfortable even, even broaching the topic. Yeah. Oh, yeah. And people don't, some people don't want to talk about it with you, but that's okay. That's perfectly fine. Just don't tell them it's all in their head. Just, just don't, just don't do that. Just, just if I could, if you take nothing else from listening to me rambling for the past however long, please do not tell someone with FND that it's all in their head and that they're making it up, please don't do that because it's so damaging and don't, don't try and allude to the fact it's their fault. Like, if you, if you have that opinion, if that's the judgment call you've made okay. But maybe, don't need with that. Maybe try and, you know, sit in a slightly softer, nicer way, don't go with. Oh, well, you did this to yourself. It's all in your head. It's all your fault. No. No. I mean, that's a, that's a terrible take. I'm just saying just to be really, I'd like to think no one would, but just in case you have that, like to think that reality might prove me otherwise. Yes. And I think there's always opinions about things like FND, whether or not it's really, whether or not just hysteria, you know, there's always going to be, oh, well, you know, Freudian or whatever, there's always going to be the other elements that come into it. But at the end of the day, the person you're talking to is just received this life changing diagnosis. Try and put all that to the side for that 10 minutes while you talk to them and then have all the opinions you like. That's fine. I'm not saying don't have your opinions, just, just be aware of who your audience is. Yes. That would be all because I think it's really hard, isn't it? Especially when you've got a medical field that's changing so quickly, new ideas are coming out all the time. It would be all too easy to be like, oh, this week, I don't believe it. You still have to talk to people with it. You just got to be aware of your audience and who you're talking to. Yeah. And neurology as a field, right? It's, it's advancing pretty quickly, you know, I'm, I'm a, you know, a specialist within neurology. So, but I look at, you know, other fields and it's, it's important for me when I'm dealing with my, my colleagues in other fields. You know, I talk about things like FND or, you know, other neurologic diagnoses and, you know, maybe I'm familiar with more recent evidence than, than what they are. But, you know, I have to keep in mind, right? This is, this is my specialty and yeah, this is my house. I know what's in my house. Yeah. Although I emperor sometimes less charitable tours, people in neurology who still they have that. Uh Yes. But yeah, it's, I it's something I continue to have to remind myself of. It's like, you know, we, I have to assume that that people are good actors until proven otherwise. Um And it's, it's all too easy to ascribe bad note motives to people whom you disagree with or who you think of have treated you badly. And I, I think that especially in a situation like, like where you have a patient and a physician, you definitely need to, to have those very open conversations. And unfortunately, a lot of people are very uncomfortable talking about certain topics and, uh, kind of have to get over that. Yeah. And I, I get it, it is really hard. Like, if you're having, I would imagine if you're having to deliver the news to someone that, you know, unfortunately they've got to have, um, cancer, whatever delivering that news is going to be really difficult. I fully get that and I'm not saying, don't feel it, don't, don't express that emotion but also just be aware of where you are. That's all I'm not saying. Shut your own emotional response off. Just be aware of you talking to and don't necessarily just use medical jargon, right? Because as normal people don't get, please don't just use medical jacket. We are trying to understand our life. We don't understand what you're saying. Please simplify it. Yes. No, I think that that is a fair request. I think the idea of describing FND is a software and hardware problem in terms of the computer crack on. Absolutely fine. We can all kind of comprehend that but don't try and go into like the way that the neurons work or like it's just going to be above our heads. Yeah, there's, there's a certain subset of people who want to hear that kind of stuff. Yes. And if they want to Absolutely, that is fine. But for people like me who have no medical background, I don't need to necessarily know what the neurons are doing. I just need to know what's going on in a very simple test. Absolutely. Otherwise I'm more confused and that happens regular enough without medical job in it. But, yeah, I think that's, it's just be okay with learning. Don't be afraid to learn something new about it. Like you're learning stuff, knew about all the other conditions. Don't be afraid to ask questions, ask the patient what's going on and listen actively, listen to what they're saying. Don't just do that really cool. Like head nod trip that we all do when we're stopping listening. Mhm. Like actually listen to what's being said because you never know there might be something really important that seems really small to the person is talking about it. That could just be the key to unlocking at all. Absolutely. Can you never know. Can't count the times that's been the case. Well, it quite often it's because you, as a person experiencing that it was only, you know, it was only a little car accident, it was fine and the person's like, hang on a minute. You had a car accident. That that's a big deal. Yeah, like you just because you've processed it or you feel like you processed it doesn't mean that it's not having an impact on something like you just don't know. Do you? I think it's being open to hearing all those little bits as well and taking the time to hear them very feel like I rambled there. Sorry. Did that? Make any sense at all. So that was excellent. That was well put. Oh, good, so good. Thank, thank you again for, for coming on talking with us. Um Thank you for having me. If people want to find you online, where should, where should they look? Where should they check you out? Um, so I'm on Twitter, um, called It's My Hand or something. Really? Hang on. I'll have to check before I say the wrong thing. It is. Hang on. Oh, goodness me. Um FND Life with um it's a blue icon and then on Facebook, I'm life with FND as well. And then you can check out the podcast where I talk to other medical professionals, people's stories. Um And that is talking out about it's all the same profile picture. So you'll know it's the same person going across it all. It's all the same. Um So yeah, reach out, have a chat, have a look. There's lots of funny videos with me doing weird things if you're interested in what my association on my walk looked like. I share them quite regularly. So you can see what it's been like for me and I just hope it helps someone that's all. Thank you again for, for sharing your story and talking with me today. Well, thank you for listening. I hope it made some sort of sense. I think so. Thank you. Marvelous. Thank you. If you enjoyed this podcast, please rate and review it on Apple, Spotify or wherever you get your podcasts. This really helps with getting the show noticed and make sure to subscribe for future episodes. You can find me on Twitter at Doctor Ken Trees. That's Drkentris or by email at the Neuro transmitters podcast at gmail dot com with any questions or show suggestions.