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- [00:05]
A
Hi, I'm Helena and today with me on the podcast is Stephen. He's one of my workmates and he's been on the podcast before as a guest and today I've roped him in to co host with me. Welcome, Stephen.
- [00:19]
B
Hi, Helena. Thank you so much for having me on. I really do appreciate it. Yeah, I'm Stephen. I work at the Ms. Trust as well on the fundraising and marketing team. I also have Ms. Since 2019, so that's why I'm on the podcast today.
- [00:31]
A
So today we are talking about falling and Ms. And falling is one of the most common causes of accidental injuries in the UK and with more than 2.7 million people affected each year, that's a lot of people. Falls can happen to anyone, irrespective of age or medical condition. But having multiple sclerosis can increase the risk of falling. Do you struggle with falling?
- [00:59]
B
Absolutely. I think I always thought that I was clumsy even before my ms, but certainly the last five years or so, I've noticed it more and more. If there is a crack in the pavement anywhere and anywhere my foot will find it and will send me in a spectacular fashion hurtling either towards the ground or the nearest personal thing I can grab. Sometimes my left leg in particular just goes dead very, very suddenly and out of nowhere. You know, it's. Can I catch myself on time with the one leg? Have I got something I can hold on to? So, yeah, no, that's definitely something that I struggle with on the regular. We actually used to live in a house with wooden stairs. It was quite slippery at the best of times and I fell down those stairs so many times and it was just about, how gracefully can I do this to minimize injury? So after about a year or two there, we decided, yes, it was, it was time to move.
- [01:53]
A
Oh, no. Yeah, I've done falling down the stairs a few times and it. It really isn't to be recommended. I feel like it's. It's one of those strange falls as well that I don't know about you, but it almost feels like it's like a film in front of your eyes where everything is happening in slow motion. And I feel like I was constantly just thinking that let's try and fall backwards so I'm not going head forward down into, you know. Into the door. Yeah, exactly. And then you get end up. I don't know. I feel I was okay. The times I've done it, I feel like I. It was probably more my pride than anything that was hurt, but. And a quite bruised tailbone but it's, it's not, not to be. Yeah, it's not fun. The last time I had a fall, I was actually out for a walk with a person who founded the Ms. Trust. We were out, she also has ms, and we were out walking with her dog and it was so slippery. So she was like, mind how you go here. And just as she said it, I more or less put my foot in some mud and just like slipped over to have a proper big old fuss. And then I was covered in mud and we had to go to a cafe and I was sitting there looking like I soiled myself. And it was all a little bit embarrassing. But I guess the nice thing when you're two people with them as you can sort of have a little bit of a laugh about.
- [03:06]
B
Yeah, definitely. And you'd hope that, you know, other people would look on and, and realize that, you know, you'd had an accident, not that kind of accident, and have some kind of sympathy towards you at least. But it is definitely there's, there's an element of pride to it. You know, I, I know I very stubbornly don't like when I can't get off the ground and I, I, I, I'm resisting people helping me. But sometimes you just got to accept that sometimes it's going to happen and just kind of be prepared for it and mitigate it in whatever way, shape or form you can. Try and be as safe as you can to minimize your own injury.
- [03:41]
A
It's such a strange response, which is almost like programmed since childhood, that sort of thing. If you ever fell over in PE and you had to jump up and be like, okay, I'm fine, I'm fine. Even if you were hurting so much. Yeah, Strange reaction, isn't it?
- [03:54]
B
It's one of those things I try and combat as a father as well with my daughter. Try and not make a big deal about the fall. Try and make it so she's happy to get up and just herself off and be like, yes, I am actually fine, rather than making it a dry. And I kind of have to internalize that a bit myself and be like, sometimes I'm gonna fall, it's gonna worry her. And, you know, she somewhat understands that daddy's not entirely well. And, you know, she'll come up and give me a little hug and just be like, it's okay, Daddy, don't worry. And it's, it's the sweetest thing. And it really does kind of help to kind of mitigate that shame feeling because there's Nothing to be ashamed about it at all. You just need to accept that this is the reality and like I said before, try and mitigate it in whatever way, form or shape you can, because your health is more important than your pride.
- [04:39]
A
That is so true. Well said.
- [04:42]
B
So, Helena, why are people with Ms. More prone to falling? What should we do when we have a fall? What symptoms are particularly associated with falling? You know, are there any exercises that we can do in order to try and avoid falling, like we were saying before, mitigate those things? There are some questions that we asked Hilary Gunn, an associate professor in physiotherapy, and I think we're going to listen to that interview now, actually.
- [05:03]
A
Yes, let's go. Today I am here with Hilary Gunn, who is a associate professor in physiotherapy at Plymouth University, and today we're going to talk a bit about falling in Ms. But before we start with that, could you tell us a little bit about who you are and what inspired you to specialize in physiotherapy and working with people with ms?
- [05:25]
C
Yeah, of course. Firstly, thanks, Helena, for asking me to come and talk about my favourite topic and it's really great to be here. So, yeah, that's. That's the first thing to say. I've been qualified as a physio a long time now and I went into physio with the usual kind of idea that I was going to be a physio in football and I was going to run onto the pitches and do all that stuff. And then I think in common with a lot of physios, we then go and we do our training and you go out and you do your placements and suddenly you realize that doing that is nowhere near as interesting as so many other areas of physiological. So very much. When I went into practice, I was. Then you did your sort of classic, you try all your different areas out and I spent four months working with a team of neurology physios and it was just brilliant because I'm terrible. My threshold for getting bored is very low, so I like lots of variety and I'm one of those really annoying people who's a bit like a toddler. I always want to know why. So working with people who have neurological problems where literally no two people will be the same, the problems aren't the same, the conundrums you're presented, the variety and challenge that you get, and working particularly, I think, in ms, and this is going to sound really cheesy, but with people who are brilliant at Problem solving and just a positive outlook and, yeah, every day is an inspiration, really. So. So that sounds cheesy, but it's true. And then. Do you want me to talk about why I then started becoming obsessed about falls? Yeah, because that's the next bit, really.
- [07:03]
A
Yeah.
- [07:04]
C
Which was, as always is the case when you work in the nhs, you have your job and then you get extra little bits bolted on. So I was a team lead of a team of neurological physios and then I was told I was looking after a team who were the falls service for the area where I was working and. But they only worked with older people and I was like, well, why are you dealing with falls with older people? And yet my clients are falling over all the time. So there wasn't anything. So I wanted to then take what they were doing and think, how can we work that for people with neurological problems and particularly with ms? And then subsequently I moved into the university and started being. Had the opportunity to do my PhD and very stupidly went into it with this idea that I was going to find out why people with Ms. Fall over and what we can do about it. And 10 years after finishing my PhD, my answer is, still, it's really complicated and we're not quite sure. So that's what landed me here, really.
- [08:04]
A
Well, let me start off by saying, on behalf of people with ms, that we are very happy that you chose us over the footballers. That's very nice to start with.
- [08:15]
C
I'm not sure the people who get involved in my studies always thank me for that, but it's nice for you to say that.
- [08:22]
A
So we already mentioned this a little bit, but people with Ms. Are a bit more prone to falling.
- [08:29]
C
And.
- [08:29]
A
And why is that? And how does sort of the risk of falling chase change over time? I always like the fact that they say, you know, I'm of that age now where I can say I had a fall instead of I'm falling. So clearly, once we get older, where.
- [08:42]
C
Is that threshold between falling over and having a fall? I literally have no idea where that is, but I think it's a really important thing because actually falling over is not abnormal. We were saying before the start of this, you know, the fact that we in evolution decided to stand on two feet was retrospectively, in terms of balance and falls, a really bad choice, because actually balancing and staying upright is really hard. And, you know, you look at toddlers and you look at sports people, they are literally falling is part of what they do. You know, we learn to balance by falling. So falling in itself is a normal part. The issue is the frequency of it, the consequences of it and the sort of the knock on effect that that has on the person, everyone around them and so on and so forth. And I don't need to tell that to, to people with Ms. Who, who are falling. And certainly we know that people with Ms. Fall often and much more than you would expect for somebody of their age and occupation. So it is definitely an issue as to why that's really hard. And we'll probably talk about that a little bit more a bit later on. In terms of how falls tend to present. It's not as simple as you kind of would think. Actually my Ms. Is progressing, maybe my mobility is deteriorating, so I'm probably going to fall over more. That's not what we see. And in some of the research that we've done, what we've seen is actually the risk of falls changes with how your Ms. Is behaving. So the reason I'm sort of waving my fingers around like some kind of demented conductor is that the study that we did where we combined some data, what we saw was two humps as Ms. Progressed in how likely people were to fall over. So falls risk very early on was quite low. And then what we saw was that as people started to experience sort of objective issues with their mobility, noticing mobility changes, that risk of falls increased. But then as that kind of it may have progressed, mobility changes progressed actually the falls risk reduced again for a little while and then went back up again. And that second hump was, was that the point in mobility change associated with starting to use sort of two walking aids consistently. So what we seem to be looking at is rather than simply the worse your Ms. Is, the more likely you are to fall. It seems to be those key transition points and change that seems to be associated with that falls risk. The other bit to say in terms of that how does risk change over time piece is that for people with more limited mobility really, you know, I've said it's complicated and there are bits we don't know. We know much less about that. We know that people tend to fall for different reasons when they've got more impaired mobility. So I know on your recent Facebook post someone talked about the issues with transfers from chairs and you know, falling off and on when you're getting on and off the loo and so on. So there are different things that go on for those people with more limited mobility, but we don't know whether that falls risk, sort of the frequency of the falls goes back up again or not, because we haven't tracked it yet. So there's work to be done in that area.
- [12:07]
A
Very interesting. So obviously this is mobility issues, but there are other Ms. Symptoms that would contribute to falling. Could you talk us through some of those ones?
- [12:17]
C
Yeah, absolutely. I mean, this is the issue is that that balance is so complicated. If you think of us as almost like the way I kind of think of it is like a supercomputer is that literally the whole time we're moving around in our environment and even when we aren't, we're processing loads of information coming in, we're making sense of it and then we're making changes to where our body is, to which muscles are activated and so on and so forth to enable us to stay where we want to be and to be able to do what we want to do. So essentially anything which can impact that, be it that your vision isn't quite sending the right information or maybe even the vision is sending the information, but actually it's a bit delayed relative to the information that's coming in from your ears, from your vestibular system, even that's going to start your supercomputer not being able to work quite as efficiently. And we've all experienced that when your computers get overloaded with too much information coming in and it's not quite making sense computer wise, you get basically the wheel of doom, which is fine because you just swear at your computer, but in human terms what that means is that we can't process and act appropriately on that information. So from an Ms. Symptoms point of view, vision problems might contribute, vestibular problems might contribute, sensory issues might contribute. So if you're not to able, able to feel quite where your feet are or even how they're responding to an uneven surface, but also things like beyond the individual, the physical stuff, actually the task that people are undertaking and the environment that they're doing it are all likely to also impact that because as well with that supercomputer, when you're doing multiple tasks, so dual tasking we call it, and cognitive issues is also likely to impact. Fatigue is likely to impact. So essentially any Ms. Symptom could contribute. One of the issues that we've got is obviously from a point of view, so what on earth do you do about it? What we need to understand is which of those do we need to target. And the problem in the research is that what we're trying to do is to find out overarching in the population what the problems and we're not managing that hugely well. So, for example, we can say that gait and balance problems are likely to h. Well, no one needs a research project to do that. You know, all your listeners are probably shouting at me, going, well, duh, of course. But when you look again at actually the. The sorts of issues, when you look at, for example, continence, there are studies which say it isn't associated with falls and studies that say it is. And just using continence as an example, the reason is probably because we're being a bit binary about it. So it's not simply about do you have a continence problem or not? One of the messages that we've found coming out is it's probably about severity and change, again, consistency. So in the work that we undertook, for example with continence, the people who reported occasional continence problems were more likely to fall than those who didn't have continence problems, but also than those who had regular continence issues. And when you think about it logically, that makes sense because if you don't quite know if you've suddenly got to rush to the loo, most of the time it's fine. It's far more likely to impact your balance. And similarly with spasticity, so leg stiffness, the people who had the sort of lower severity, where they had a stiff leg at times but not all the time, were the ones who fell more than those who had the rigid legs or those whose legs were fine. So the research isn't always helping us, but I think it is about the fact that actually it's just simple because balance isn't simple and falling isn't simple either. And the other thing is it's the individual. It's all very well for me in my research hat go going, well, continence is an issue, or continence isn't an issue for individuals, it may well be.
- [16:29]
A
Yeah, yeah.
- [16:30]
C
So it's hard. But the key messages I would say are making sure that you're looking at change and unpredictability. If you've got symptoms that are changeable and unpredictable, that's where you might want to go. Okay, this could be a bit of a problem. And anything affecting balance, mobility, which in Ms. Terms is loads of things, are likely to contribute.
- [16:52]
A
Very, very interesting. So are there any early signs that can indicate increased risk of falling?
- [17:00]
C
But this is the other bit. I'm laughing because in the literature, lots of people have done studies about predicting falls risk and consistently in the literature, the biggest predictor of falling is having fallen oh, okay. Which again is blindingly obvious, isn't it?
- [17:18]
A
Yeah.
- [17:18]
C
Falling over once, you're probably going to fall over again. So our ability to predict falls is not good. Generally, I think it's about those change in transition points and symptom variability. So if you've got variable symptoms and particularly those ones that are likely to impact maybe I. Either how fast you're having to interact with your environment or your ability to do that, those are when I'd be going. Okay, not ideal. And particularly those mobility transition points. Really other than that, I couldn't say for sure. And for every one that you say in the literature might be, there'll be another couple of studies saying there aren't. So certainly having fallen is a risk factor, right? Yeah. No breaking.
- [18:07]
A
No groundbreaking surprises on that one, maybe. Right. Let's talk a little bit about what should we do if we have a fall? Because we realized that listening from this world most likely to fall at some point. So what should we do if we have a fall? How do we. Can we fall safely and how should we be getting up? I mean, sometimes you don't really have time to think about these things, but then some falls feels like everything goes in slow motion.
- [18:31]
C
Yeah, absolutely. And there is some work that's been done about falling safely and it's, it's not. I've not found lots of stuff in Ms. I know certainly, certainly people with Ms. Have told me, you know, they've done stuff, they've taught stuff. If you go on social Media, there are YouTube clips aplenty talking about falling safely. And a lot of it comes from sort of a martial arts background because that's where, you know, you think about the martial arts kind of activities people do. They, they do that kind of thing. So there are certainly programs out there, the, that look at training people to fall. It's not something that I've done a lot of mostly because martial arts isn't my background. So it's certainly not something that I'd be necessary. You wouldn't want to trust me with that. But it certainly is worth looking at particularly I think if you're a person who has, as you've said, those sort of slow motion ish kind of falls, you know, that idea of tipping forwards, dropping your shoulder and almost rolling is probably a good one. Certainly if you look at the literature about those kind of learning to fall program, what they're not necessarily doing, and probably they're not aiming to, is to reduce the amount of falls, but they're making people more confident. Yeah. And confidence. And again, I think we'll probably come to this later. Confidence is important. Being confident to know your ability, that you can interact and that you can do something about it. If the worst happens in terms of having fallen, the first thing I always say is don't panic once you've landed, with the exception of if you're in the middle of a street with cars bearing down on you, to be honest, you're fine, you can't go any further or if you're on the edge of a cliff, but other than that, you're down there. Take a bit of time. It's really, really easy. It's embarrassing, you know, particularly if you're in a public place. You want to get up as quickly as possible, but actually it's really important just to stop, do a quick top to toe MOT and make sure everything's where it should be and that you've just taken a moment just to gather yourself and then to think about actually, am I hurt? And if you are, how am I going to summons help? If you're able to get up, then that's a good thing to do. And one of the things that physiotherapists do a lot of when we're thinking about falls is training people not necessarily to fall, but to get up after a fall. And there are techniques that you can use and I think on your Ms. Trust website there's actually a little how to get up after a fall. So there's information out there people can access and they'll probably need to adapt for their own individual circumstances. So practicing getting up is a good skill to have in your locker before you fall. And the best way to do that is to start up and gradually work your way down. So maybe start in standing practice leaning forwards and coming back up again, then practice leaning forwards, going onto a knee. So don't just simply stick yourself on the floor and hope you can get up, because that's a bit embarrassing if you can't. So work backwards and go up physiotherapists to help you so that you really know that you can get up and how best to do it. Then if you do fall, you've got that skill to draw on. Having done your top to toe check of Am I all in one piece, you're ready to go. For many people that isn't going to be feasible. And it's important, I think, that we're honest about that because I think it's certainly a lot of RMS clients tell us it's about having that discussion what am I going to do if I'm on the floor and getting up isn't feasible? There's simple things you can do. Can you so practice, you know, if you're in bed, practicing bridging, lifting your bottom up off the bed because that enables you to move around. What you don't want to be is stuck in one position if you can avoid it. So if you're down on the floor and a little accident happens, being able to move away from a wet patch is really important. Having an action plan. So I had a patient once who was the most organized lady. She had little. She would. She tended to fall sort of in specific places and she had a blanket on the floor so that she could keep herself warm, bottle of water, that kind of thing. And obviously having the discussion which I know is a hot topic for many people, how are you going to get help? Do you have a phone with you? Some people are happy to use the alarm call buttons. Other people don't always use them. And that's very much personal decision. But I think it's about having that discussion, thinking things through and coming up with an action plan. And whenever I'm working with someone with Ms. Actually that's a core part of. Okay, we're going to think about falls. Probably avoiding all falls is unrealistic, you know, because falls have happen to all of us. So what am I going to do in best case scenario, Worst case scenario. So you're ready. Really?
- [23:28]
A
That was really interesting what you were saying about like taking a little mot. If you're falling over and you have say your partner or your children or someone, should they then also be aware of this? So they don't try and get you up straight away, but they actually will let you do a bit of mother.
- [23:45]
C
It's really difficult, isn't it? And it's human nature and even you know I do it, even though I know I shouldn't, is that you want to help. So people will tend to pile in. The person who's on the floor, you feel embarrassed. You just need to get your thoughts together and it is often an emotionally highly charged moment or two piling in and getting you up is not necessarily the ideal. And certainly I've. I've facilitated a lot of discussions between family members about actually just lets everyone wait. As I say, with those few exceptions, once you're on the floor, you're not going to go any further. Just hang fire, gather your thoughts, gather your equipment if you need it. People you know, there is equipment available and falls teams can often provide things like that. If people are falling and struggle to get up, gather your equipment, make a plan, everyone calm down and then, then go, you know, re. Go from there. Because otherwise you all land up in a struggle and there's, you know, there's a real risk you're all going to land up in a heap on the floor, which helps no one.
- [24:48]
A
But yeah, you don't want a big open pile on people on the floor.
- [24:52]
C
An increasing pile of individuals.
- [24:54]
A
Yeah, it's not good. That would be very strange. Let's talk a bit about exercises, because you said that, you know, you could try and work out some exercises on getting up and down from the floor, but there's a lot of exercises that can help with balance and coordination. And also, obviously this goes from people who are, you know, maybe don't have any sort of symptoms of mobility, but also people who might be more disabled. What exercises are out there and how does it suit everyone?
- [25:27]
C
So many exercises, so little time. So as a physio, you know, exercise is what we do. It's a core part of our practice and we know for Ms. That exercise is good for so many things. And I'm sure many people with Ms. Are very amazing at using exercise. Other people, it's less for them. And I completely get that. It's the same for all of us. But from a balance point of view, we do know, and there are studies that exercise can improve balance. What, what we find quite tricky is that at the minute, the link between exercise, improving balance and reducing falls is slightly less clear. But given how important balance is in terms of falling and falls risk, it stands to reason that the better your balance is, the more likely you are to be able to avoid a fall. There isn't one size fits all. There are lots of studies out there using a whole host of different exercise modalities. So there's no specific silver bullet. And from a point of view, as someone contemplating exercise, I take that as a good thing. Because if there's one particular program that you've got to do and it's not your thing, that's not ideal. So in terms of collating the evidence and when we've been looking at it, literature and in research, not just in ms, what we know is that there are key principles which are likely to help exercise to be effective, to improve your balance. And of those, essentially there are three key things. And the first is that you need to undertake what we kind of describe as highly challenging balance training. Okay. So essentially, it's a bit like making a muscle stronger. And unless you work that muscle, it's not going to get stronger. So unless you challenge your balance, your balance isn't going to improve, which is sometimes quite a tricky thing to do because we're all kind of sensible individuals. People with Ms. Are really good at knowing the point at which the balance is going to be a bit iffy. And what we're saying to people is, actually, we need you to be working up towards that. So what we mean by highly challenging balance training is a couple of different things. The first is what we call minimizing your base of support. And your base of support is basically the bit that's on the floor. Okay, so. Or on a supporting surface. So at the moment I'm sitting talking to you, my base of support is my bottom in my chair and my feet on the floor. So I've got quite a large base of support. When you're standing, it's obviously your feet on the floor. If you're using a walking aid, it's that walking aid is also part of your base of support and your hands. So when you're exercising to work your balance, you need to be thinking, how can I minimize that safely? So, ideally, not doing balance exercise, if you can do it when you're standing, if you're somebody who's able to stand, holding on tight isn't going to necessarily help. You need to be reducing that where you can. So we do a lot of stuff where we're saying, you know, light fingers on surfaces, etc. Etc. So it's as an individual, working out where, you know, if I've got my feet wide apart, I'm going to feel more stable. Can I just nudge them a little bit further together to make myself a little bit more wobbly? So minimizing your base of support, incorporating movements in three dimensions, we always. And it makes me laugh because you look at physio. So I work at a university, I work with people who are training to be physios, so they come up with kind of the stock exercises. And there are classic physio exercises that all of your listeners will know and hate, probably, and they're usually involving moving side to side, forwards and backwards. Okay. So we kind of do a lot of this, you know, sidestepping and forwards, walking backwards. But in the real world, we don't move like that. We move in circles and we move in diagonals and we, we turn our top path to go and talk to someone while we're walking forwards. So the exercises you do need to incorporate that. Okay? Walking forwards and backwards and walking sideways make you very good at walking forwards and backwards and sideways. But when you're going around Tesco's, that's not how you walk. So your exercise needs to incorporate those movements in three dimensions and it needs to help you to move what we call your center of mass, which is this bit. So moving height changes, bending, turning, twisting, that kind of thing is also really important. So what that means is it doesn't have to be your physio exercises as such. What I would say is the role from a physio point of view is that alongside those key balances, training bits, it's about making any Ms. Specific bits as good as you possibly can. So what your physio will be able to do is to evaluate the key bits for you and to help you to tailor those exercises to your individual symptoms. But from that point onwards, once you've learned the principles, you can apply them across. So, for example, with some work we do with people with ms, what we said is actually we need you to do quite a lot of practice and I'll talk about how much in just a sec. But it doesn't have to be your boring physio exercises, it could be doing a Tai Chi class, because Tai Chi beautifully achieves that minimizing base of support. Standing with your feet close together, turning, going up and down, all of those things. Yoga, same kind of thing, dancing, lots and lots of turns and moving around there, you name it, you can turn it into a balance exercise. Equally, when you're, you know, if you're at home and you're taking the washing out, the washing machine, actually going down and doing that is really important as well. So you can incorporate those principles into other things other than doing exercise. And that's a really good thing because the bit that's the kind of, is that in order to improve your balance, we need to practice a lot. And what we're talking about, when I mean a lot, is kind of sort of two hours or so worth of practice a week to really meaningfully change balance, which I appreciate is a big ask. So what I talk about when I'm talking with my clients is actually it doesn't have to be 40 minutes at a time. That's probably not achievable and it's certainly not fun and engaging over a long period of time, but actually five minutes here, five minutes there, so soon adds up to 120 minutes, which is two hours in a week. So actually, that concept of look at what you're doing, look at how you can change it to challenge your balance, work out where your challenge point is. So we always talk to people about if you've got a kind of a five point scale where zero is you're comfortably sitting in a chair and five is you just fell over, we want you to be working at kind of three out of five working where you're challenging your balance and it's a bit. But you're okay. So how can you make all of those activities satisfy those demands and add up to that 120 minutes? And the good thing with that is those concepts can apply whether your mobility is really impaired or actually your mobility is really good. Because minimizing your base of support might be about if you're somebody who doesn't walk so much, maybe sitting on a perching stool is a smaller base of support than being maybe in a wheelchair and practicing moving, you can be reaching around and twisting and so on forth in a sitting position. So the concepts I would suggest go across the severity spectrum, which is helpful. The other bit in terms of exercise I think is practicing particularly this is for the people who are mobility is more limited is if you've got particular things. So for example, the transfers aspect, exercise to help you to transfer more safely, more effectively is probably a really good thing as well. So if you know that falling is associated with a specific activity, train that activity. You know, if you want to get good at whatever. You know, I always say if you want to get good at playing the piano, you don't practice the violin. It's the same thing. If you want to get good at transfers, you've got to practice those transfers. So break them down into chunks. Practice each one to make you better and safer. With that.
- [33:59]
A
It's really interesting what you were saying before about getting physio, the boring physio exercises. Because I've heard lots of people say.
- [34:07]
C
This, you know, I'm a physio, I'm allowed to say it. They're really not the most exciting.
- [34:13]
A
And because I think I've also had some printouts a while ago when I was seeing a physio and it is quite hard because you're all well meaning and you want to do it, but it's that getting it done. I like what you're saying about, you know, dividing it into chunks. I'm currently learning Spanish in one of these learning apps and I swear the reason why I learn it is because I keep on getting reminders on my phone. I say it's time to learn Spanish and then I just feel so Guilty. But because I just remember going to my physio and then she was saying, did you do the exercises? And I would be like, but I'd just done them the day before. Because people do it.
- [34:49]
C
Absolutely, yeah. And I think we have to be realistic. You know, having Ms. Is no joke. And me going in there and presenting a sheet of what are ultimately not always the most exciting exercises in the world, and expecting someone to be able to commit 30 minutes, you know, three times a week, it's really hard because that's alongside, you know, you're getting guidance on exercise to do your cardiovascular, your strength training. It just gets overwhelming. So the more we can make that integrated into to real life and also adaptable to what you like, you know, you're learning Spanish and your phone reminders are helping you. There are equally people who will tell me, if I get a phone reminder, what's going to happen is my phone's going to get chucked across the room and I'm not doing it. So it's about thinking about realistically what's actually going to work for me. And your physio will appreciate honesty. So, you know, I think once you get experience, you get a good sense of when people are just going, yes, dear, of course I did. But actually it's fine. And that's what I really love is when our clients go, hilary, that's just not going to work. Let's work and we'll come up with something else. And that challenges me then to produce something that is effective and is achievable as well.
- [36:14]
A
I like that. So instead of just going into saying, yes, yes, I'll do this, actually look at it and go, yeah, no, I won't do that.
- [36:21]
C
And then we did a study back along where we were talking with people with Ms. And I'm going to paraphrase because I can't entirely remember what this person said, but it stuck with me, which was the fact that actually these exercises are all well and good, but it's me who's got to put the effort in. So I need the support to work out how I can achieve that. And I think that's, you know, that's our role as a physio is it's, yes, okay, we're there. We need to evaluate, we need to think about how we can adapt exercises. And I'll kind of sort of flag a couple of bits later actually, about simple adaptations, but. But it's about making it achievable and making it realistic because ultimately, otherwise it's a waste of of your time. Forget my time, you know, I'm just doing my job. But actually it's about making it work worthwhile for the person who ultimately is doing it.
- [37:17]
A
Yeah, I like that. We talked a little bit about fatigue. Fatigue. It's a big one.
- [37:24]
C
It is, it's huge.
- [37:26]
A
And I guess it will affect exercise because we see people wanting to start exercising and then the fatigue hits and it gets really difficult. How do we manage that? If we add that onto the let's get ready to exercise mix?
- [37:42]
C
Yeah, I think, I mean, fatigue generally is hard and I don't need to tell anyone with Ms. That because you're living it every day. And also in terms of the balance and falls piece, we aren't 100% clear about how big an issue it is in terms of again, for that population size. When you're looking at research, we're looking at a population level, but actually it's so individual. So I absolutely, absolutely confident that for people who do have significant fatigue, at the very least, what it's going to do is impact your ability to engage in exercise, which is likely to mean that the fitness benefits of exercise, therefore the strength might be a problem. So it's going to have a knock on impact balance. As with everything, I think it's about getting things as good as you can. So. So, you know, there are lots of fatigue management programs out there, you know, in the uk Facets, which is a. I'm sure people are familiar with, is one of the many programs that you can access. So certainly if you feel fatigue is the major factor impacting on your balance and your falls, I would definitely be looking at that. And I think it's about making sure that if you are falling, what you do is very carefully work out what are those things that are impacting on it. So keeping a diary of falling so that you can start to see those patterns and if the fatigue is going with it, then you can just go, well, clearly the fatigue is going to be the issue. So it's doing that investigative thing of really pinning it down, but then it's about thinking, what am I going to do about it? So there was some work done in the US and Canada actually where they came up with essentially it was a whole falls management program which we're kind of adapting and trying to think about how we can use that in a UK situation. But what they came up with was essentially they got people to evaluate the symptoms that they felt were contributing to the falls and then to make a decision from different options about what they were Going do to do about it. So for example, I'm going to read this to make sure I don't forget it. You know, for the fatigue thing, what they said is right, you could do any of these things. You could delegate the activity so that you're not having to do it when you're fatigued. You could reduce the activity so the frequency of it. So rather than going to the shop three times a week, you go once a week or whatever, you can change the activity so you don't always have to do everything in exactly the same way. And people are brilliant at adapting. And your listeners are probably already doing this anyway. You could rest before you do it. You could undertake exercise to help you to do it more effectively. So if you find that getting out of a chair is the bit that's really causing you fatigue, actually training that and building up strength to do that will help. There might be medications that you can take. So talking to your medical providers, changing the environment. So environment is always something gets discussed when we talk about falls or maybe using assistive technology. And again, people have a real love hate relationship with assistive technology. People often say they don't want to give in, they don't want to be seen using those things. But actually if it enables you to continue doing that, you've only got so much energy in your energy bank. So actually using that assistive technology. So all of those are perfectly reasonable options. But it's up to the person to then think, do you know, I'm going to try one of those. So rather than simply going, yeah, I'm fatigued and I'm going to fall, it's about, yes, okay, my fatigue is relating to that, but I've got choices. They may not be the choice we want to have, but they're there. And actually a bit of trial and error might just help to make the difference. Because the other thing that we know about falling, and I should probably have said this earlier for people with ms, is it's often not during the big activities, the risky activities that people fall. So, you know, we always think about, you know, maybe, I don't know, you're undertaking something and you think this is a risky activity because you're going to be attending to that 110%. That's probably not the bit that makes you fall over. It's the I was simply in the kitchen and I turned around to get something and boom, there I was. So actually those little changes can sometimes be enough just to make the difference between having a bit of a wobble and Going great and landing on the floor. It's not the big things.
- [42:13]
A
Some really good points there. I like that. Just for people listening to this, though, don't try and delegate your physio exercises to anyone.
- [42:21]
C
No, you can't delegate physio exercise.
- [42:27]
A
Let's talk about cognition. This is something we saw a lot where people. And I certainly know that this is something I feel about that it's the fear of falling and the cognitive and emotional factors. Or confidence.
- [42:42]
C
Yeah.
- [42:43]
A
How does that impact mobility? Because I can certainly have certain days where I'm fine and then other days I'll go into Tesco and I'm just overwhelmed by everyone and I just feel like I'm going to head straight into the freezer.
- [42:53]
C
Yeah, absolutely. So there's two bits here, so I'm going to kind of try and deal with them separately. The first is the cognitive bits and then the second is the confidence bits. So from a cognition point of view, we all know that that sort of thinking, attention, and particularly like you've said, those busy environments can be a real challenge, both visually but also from a dual task thing. And dual task is one of those things we always laugh and joke about. But I'm talking about dual t task in terms of balance. So we always say, oh, men can't dual task. There's no evidence of that gentleman out there. So I'm just telling you. But in terms of balance, dual tasks, so walking and interacting in busy environments, walking and talking, walking and carrying things, all of those are examples of dual task. And what we do know is that consistently for people with Ms. Who are falling, dual tasking is challenging. So have a check if you think it might be, there's an easy way of checking it, which is to try and balance in a position that you find slightly challenging. So often, if you find, if you're able to stand, maybe putting your feet a bit closer together or one foot in front of the other, check the task, see how you feel about it, and then add in a cognitive task. So, for example, some of the classic ones are try and count backwards from maybe 100 in multiples of three out loud, do it in a quiet room where no one's watching and see what happens to your balance. Because what you'll find is that you will wobble more. Now, it's normal we all wobble more, but it's about the amount of wobble. And again, just like anything else, you can train dual task ability. So practicing your exercises, and this is where taking those basic sort of fairly not very exciting Exercises and tweaking them can give you more value for exercise. That is, you might want to do your balance exercises if dual tasking is tricky for you whilst you're undertaking a dual task. So it might be about. So if you've got family, they adore doing this. You pick a card from the top of a pack and while you're doing your balance exercise, you have to name many, you know, whatever's on the card, which might be. Name as many cities beginning with a C as you can. So you're trying to be thinking about that while you're balancing. If your dual tasking bit is about what you. You've just said about that sort of moving around in an environment, actually there are ways that you can do that that don't involve you standing randomly in the supermarket and wobbling around. So again, on social media is just a. Unbelievable. If you go to. Am I allowed to say YouTube, is that allowed?
- [45:33]
A
Absolutely, yeah.
- [45:35]
C
Perfect. I didn't know other. Other viewing platforms are available. If you go to YouTube and you search, people do all sorts of weird and wonderful things like they video walking around supermarkets from the first person. So as if you were walking around the supermarket and driving up down streets and parks where you've got people coming towards you. So what high wall do with people, where they find that's particularly challenging is if you've got a tablet or a PC, get the video, get it up on full screen and play it and practice your balance exercises while you're watching the movie. Because then what you're getting is you're getting that dual task. Your brain is having to process that information whilst you're balancing, but you're not doing it in an environment where either you're going to feel completely daft or it's potentially a little bit risky. So there's all of those sorts of marvellously free resources that you can use if you can sort of, again, detective out what things you're finding particularly challenging, like you've already identified them, and then think, how can I replicate that in a way that enables me to practice it? So that's a sort of cognition thing. The confidence bit is also really multifaceted. So, yes, it is. You know, people are highly concerned. People with Ms. Are highly concerned about falling. Sometimes I would say that that's absolutely realistic. It's because, you know, when you look at it, actually when you measure. So what we will tend to do is that you can use questionnaires to evaluate people's level of concern about falling and then you can do Tests to evaluate their sort of physical balance ability, oftentimes they will match beautifully. People are highly concerned about falling because their balance is poor. So I would say if that's you, fine, stay with it, because that concern is absolutely realistic. Don't necessarily let it stop you doing it, but use it to help you to plan and to think about how realistically you're going to function most. We talk a lot about safe mobility rather than not falling because it just, it feels less restrictive. So how can you use that concern to help your plan to maintain safe mobility? But when you measure those sort of, that concern about falling and physical ability, there are some people, and in ms, we've got some evidence to show that there are people with Ms. Who are like this as well, where actually their concern is significantly higher than, than you would possibly expect based on their physical ability. So it's worth having a think about. If you are very concerned about falling, just asking yourself, what's that based on? You know, is it based on experience? Is it based on that? Wanting to avoid it and think about what your balance is? You know, just look at and think objectively, how bad is your balance? If you're not sure, contact your physio and they can evaluate it and how have that conversation with you. Because certainly for some people there is a mismatch. There's also lastly, a very small group of people who are unconcerned about falls, but possibly should be a little bit. So there are some people who are a little bit kind of like gung ho. And yeah, I'm just gonna do it anyway. So. And I'm all for feel the fear and do it anyway, but actually it is important, important if you're consistently finding that in what you're going to be doing, just occasionally asking yourself, do I just need to think about this a little bit? Are there other options? Can I do this to maintain safe mobility? I think is a good thing.
- [49:10]
A
So if anybody who's listening to this is because we do get a lot of people who are very newly diagnosed with Ms. Who haven't listened to the podcast because they want to know, you know, what might be down the line or what's other people doing or what can I do to prevent things, what would you say to someone who is completely new to Ms. And it is very worried about falling?
- [49:30]
C
Yeah, I'm not going to say don't be worried because actually thinking about it and addressing, you know, naming the elephant in the room a little bit is really important. What I would say is there's lots of things you can do. And that adding balance to your repertoire, you know, a lot of people when they're newly diagnosed will be very much right. Let's see. Think about what the guidance is saying. I need to be doing my exercise, my cardiovascular exercise, my strengthening exercise, really good. Adding in a consideration of balance would be a really good thing to do. So I think the key thing with that is to find your thing. So it's not about finding. This is the exercise you must do, as I've already said, it's finding what is it that you can engage with over a long period of time. Time, because as you all know, it's a marathon, not a sprint. And working your socks off, going at it like a bull at a gate initially almost always means that you'll come to grief, you can get back on it again. But actually thinking about what is it that I really enjoy doing, what sort of exercise activity can I then incorporate those little bits to go, actually, how can I make my balance as good as it possibly can be? And then, as I said, be aware that actually it's that challenge, that change, I should say, and the unpredictability that we think are really important as potential. Just be a bit careful, you know, they're sort of yellow flags, if you like, so carry on. But if you're suddenly, you know, some people who are very newly diagnosed will get quite unpredictable symptoms. That's the time just to be thinking about, right. What can I do to maintain safe mobility in that context? Don't avoid doing it. You know, it will be very easy in a way to prevent falls. If you just sat in a chair and never did anything, you probably wouldn't fall. But that's not what any of us want. So how can you just do those little things that help you to maintain that safe mobility and use the resources there? I know accessing therapies is sometimes challenging, but they're there and they will help and have a conversation with them.
- [51:47]
A
And I like that you're saying about all the kinds of different exercises you can do and what people can find. We do hear a lot about recently, and I'm not talking about the world of Ms. Now, but like the importance of strength training.
- [51:58]
C
Yeah.
- [51:58]
A
Especially for, you know, women of a certain age.
- [52:01]
C
It's all about the strength training now, isn't it?
- [52:04]
A
So. But would you feel like doing things that are good for balance, that it will improve balance as well or.
- [52:12]
C
Well, the stronger you are? Certainly that will help because it's one component. So like we said earlier, going back to the notion of the supercomputer, the supercomputer in your brain is processing all of this stuff, but then it needs strong muscles, mobile joints and a good skeleton to be able to move it effectively. So keeping strong is good, but it's just about incorporating that into something that's achievable. So I would say if you're doing strength training and you can do it in a way that's a little bit challenging to your balance at the same time. So, for example, so as a woman of a certain age, I'm doing strength training, and so there are lots of options at the gym I go to, and you can do exercises on machines, but they also do things like kettlebell classes where you're lifting a weight that's a free weight, and actually when you're doing that, it beautifully. So yesterday, yesterday evening, it's a nightmare being a physio because everything you do, you're like, oh, this is useful. We were doing things where we had to pick the kettlebell up and lift it up above our heads in a twisting movement. And I was thinking, awesome, it's a strengthening movement while I'm working balance. So you don't have to sit there and go, I. I'm now doing balance training and now I'm doing strength training. Squash them together and you can get double the amount of effect for the amount of time that you're engaging in exercise. Because there's only so many hours in the day in there.
- [53:39]
A
Yeah.
- [53:40]
C
And if you, you know, if you follow all the advice, you'll be doing nothing but exercise.
- [53:44]
A
Yes. I guess that's the thing you say, oh, you need your cardio and you need this, but you can, you need.
- [53:50]
C
To balance exercise and you need know. So, you know, incorporating those things. Yeah. Is. Is a really useful way of doing it. You know, thinking about how you're doing your strength training to add in your balance, to intersperse it, maybe with your aerobics. All of those things can help to make it achievable, because that's the key.
- [54:11]
B
Yeah.
- [54:12]
C
It's not about doing, you know, three lots of strength training this week and then nothing for the next six months. It's finding a routine that you can keep doing that you enjoy doing and becomes part of actually you and what's meaningful to you.
- [54:28]
A
We spoke at the start a little bit about if you'd fallen over and, you know, if a partner is in the room, caregivers, I mean, how can they help prevent falls? And also, but, but also by respecting independence. Because I think Sometimes, like you said, people just want to help, but that might be a bit of a hindrance at times.
- [54:47]
C
Yes, this is a really tricky one. And many of the time when I've been working with people, I felt a little bit like Switzerland in the middle of a discussion because you've got one side of the thing saying, I want to do this and I want to keep doing it and the other side of the discussion going, but when you do it, you fall over and it's really hard. I think the key thing that all of us need to do, and that's not just caregivers, but us as therapists, whoever, or even as helpful kind of addition, you know, friends, neighbors, whoever is telling people what to do, rarely works in anything in life, and certainly in forced prevention, it tends not to work either. So it might be blindingly obvious to you what's happening and what's going wrong. But generally telling someone that that's the situation, particularly if they're right in the middle of a. It is, it's, it's very, very. We, we all tend to do it, but actually it doesn't tend to help because what you then get into is a no, it's not. Yes, it is. No, it's not situation. And that's no good for anyone. So if you can try and avoid particularly. I know in the moment, if someone's fallen over when we've had the discussion and you knew it was going to end badly going, I told her it was going to end, it doesn't help. Okay, but, but what can help, I think, is just having that conversation about safe mobility. So, you know, talking to the person after the event. So deal with the problem, pick it up, have a cup of tea, you know, everything's better after a cup of tea. But then support the person to analyze the risk and what went wrong so that they can then, you know, in previous discussion with you, I talked about sort of that detective thing of, of working out what is it that actually went wrong? Because when we fall over, we all do this thing of, oh, it was the dog, it was the cat, it was the trailing fleck. It usually isn't particularly if you've got ms, there'll be other stuff. It will be the symptoms. When we're doing any kind of risk identifications, it's usually you look at what's going on in the individual. What is it about the task and what is it about the environment? And that can be a nice way. So as, as people after the event, I think if you can sit down and Actually go, let's just have a think about this. Okay, this happened. What were the individual bits? What was it about the task and what was it about the environment? And even then you need to sit on your hands and rather than, you know, when the person then goes, actually, I could have done this rather than thinking, so therefore you must do that. Actually helping the person to come up with the idea about how they might be able to change what they're doing, because you're more likely to do it, aren't you? But also really simple things. Thinking about. We've talked about the individual stuff, so, you know, using those strategies that we've already talked about. If you're thinking about the environment, actually sometimes the things that you get to help you can get in the way. So for example, one of the things I always talk to people about, and this is a really nice thing that a caregiver can do, is like a walking aid mot. Just have a quick look at the walking aids and say, for example, is the rubber bit on the bottom worn? Are there problems with how it's working? Because actually, that can quite commonly be a reason why someone slips if the ferals. And actually it, you know what's quicker, just get another feral, stick it on the end. No dramas, no excitement. It's a nice little thing you can do just, just, just to keep things ticking over a little bit and to help with those things. But it is about emphasizing that safe mobility. And as I said, if, if you're in the moment with the fall, actually, you're there now. Let's just chill, deal with it, and then move on in, in that constructive manner where you can. I appreciate it's very easy for me, sitting here in my little office to say that. I, I don't underestimate how hard that is for caregivers.
- [58:48]
A
We've mentioned technologies and aids and things like that. Is there any. I mean, there's always innovation in this market, isn't there? And I guess there must be so many people showing up and going, can I show you? Can I demonstrate some new equipment to you? Are there any kind of exciting things that's coming up that would.
- [59:06]
C
As you said, there are always exciting things. Whether they're useful in the long term, I think, is another question. And the exciting things, the other thing about them is they're always really expensive. Yeah. So that, you know, at the minute, if you just go out there and you look at, you know, research about balance and falls, rehabilitation, there are robotic therapies, there's transcranial magnetic Stimulation, there's all sorts of things. The literature is in its really early days. The only thing that you know, if you, if you look at the evidence it, that's showing that it might be helpful in terms of balance, where there's an evidence base for it are what we call exa games, which are things like the Wii Fit stuff. I suspect the reason that it's improving balance is because it's engaging.
- [59:57]
A
Yeah.
- [59:58]
C
So I don't think it's a magic, you know, the Wii Fit doesn't do anything that's magic relative to doing balance exercises. Exercise. But what it does do is it wraps balance exercise up in a way that's quite engaging for a number of people. So they'll do it. And when you look at, you know, the games that you play on some of those platforms, they're doing all of those things that I talked about earlier about the minimizing basis support and so on and so forth. So I don't, certainly from my point of view at the minute, I'm absolutely prepared to be proof wrong in however many months or years time. But I'm not convinced that those sorts of exercise therapies, if you like or technologies are necessarily doing anything over and above what you can do quite cheaply and easily as long as you can find a way that you enjoy doing it. What I would say is that some of the technologies that we've got now that might help with managing force so you can get lots of little gizmos that will help to lift you off the floor, you know, some of the, the monitoring things that will tell you about set, you know, so you can now get your smart watch or whatever, which will automatically contact people if you fall. I think some of those are really nice and worth considering if, if you're in that situation. But I'm always a little bit, I suppose it's. It's having a background ground in working in therapy and not necessarily having loads of funds. I don't know that necessarily throwing loads of money at the problem is going to give you benefit over and above what you can do. Relatively straightforward, certainly in terms of exercise, but it's worth considering some of those home assistance things.
- [61:42]
A
It's interesting because I guess one of the reasons why things like the Wii Fit, like we were talking about the Spanish learning app, I won't name any names here, but because there are others on the market as well. But you know which one I'm talking about probably is that kind of gamification. And I suppose one thing that if you, you know, Have a partner or we're talking about getting, helping with, with independence and things like that is maybe to have an accountability buddy and do some of the exercise with because it's going to benefit the caregiver as well. Because everyone should do a bit of exercise.
- [62:12]
C
Shouldn't.
- [62:13]
A
Yeah, yeah.
- [62:14]
C
And if you're doing, I mean that's where I think things like the Tai chi and so on come in because they aren't exercise their participations and activities, you know, or if you look at, you know, if gardening is your thing, actually you can, you know, everyone can go out and do their gardening and incorporate their balance exercise into that. So I think, I think that's a nice way of doing it in a way that everyone can do it. That the other bit I was just going to say about accountability is and, or having something that's engaging is I talked earlier about sort of analyzing falls risk and sort of thinking about it and that can be really dull. But actually one of the things that we've used that people seem to really enjoy is we ask our people who've fallen to take a photo of where they fell and then they bring it in and present it to one of the, their, their peers and you can have some really great, really engaging discussions. Just, it takes it away from being, okay, I fell over. You know, it can be a bit more to being an engaging discussion where you then go, well, of course I need to change that about the environment. So looking for ways, I suppose it's my low boredom threshold, looking for ways to make it entertaining in everything you do, I think is probably really helpful across the board, really.
- [63:32]
A
So turn it into a true Fallout False podcast. Maybe instead of true crime, you'll enjoy this. My, my, my smartwatch just bust and told me I need to move. So that was funny enough, I've rambled. But before I let you go, are there any sort of final takeaway points that you like? If people who are listening to this are going to remember one thing before they turn this off, what should that be?
- [63:59]
C
It's really hard. Don't beat yourself up. You know, that would be the key thing, I would say. I think there's always a lot of emotion. It's anxiety provoking, it's embarrassing, I get that. But actually don't beat yourself up about it. There's help out there and sometimes little things can make a big difference. So there was a cycling team a few years ago that talked about marginal gains and the cycling team's gone down the tube since then. But the, the concept is really good. You know, little changes can make a big difference. And actually action planning and challenging your balance is a good thing.
- [64:37]
A
Fantastic. This has been so interesting. Thank you so much, Hilary, and thank.
- [64:42]
C
You so much for having me.
- [64:43]
A
So here we are at the end of the interview in the midsection of the podcast. And we are not doing adverts as we are a charity, but we do want to tell you all about some of the resources that we have for people with Ms. And as we're talking about falling today, you can head to our HSZ on our website, ms.trust.org and hit the HS for F for falls. And there's plenty of information there. We also have a series of exercise videos on the website that we will link to in the show notes, which can help you with things like getting up off the floor. Um, so that might be something that you would like to have a little go at after listening to Hillary.
- [65:26]
B
We also have a range of different activities that you can get involved with as well. Obviously, you can incorporate that into a fundraising task if you're looking to do so. Every year we do an event called Master Ms. Every May. We're also looking to do more accessible events throughout the year that anyone can join in with. And it's all about doing exercise that feels right for your body and is, you know, attuned towards your level of fitness, whether that is running, wheeling, walking, just getting up and down off the sofa, whatever feels good for your body. And we're going to be running these throughout the year.
- [65:58]
A
So that was Hillary. I learned a lot of what she was talking about. There was a lot of things I didn't really know about before when it comes to falling. I love the idea of sort of CSI ing a little bit of why you fell over, going there and taking a photo of it and figuring out what actually did happen. It was quite funny because after I spoke to Hillary, I went into London and I was walking with a friend and I did what you were talking about in the beginning there and stubbed my foot at the crack in the pavement. And I was so close to getting my. My phone out to take a picture. And my friend was like, what are you doing? And I was like, I'm just investigating a little bit of why I fell.
- [66:40]
B
Yeah, absolutely. I think it's. It's good to know what those hazards are in order to know what are your most likely triggers, what is most likely going to cause a fall for you. So obviously you can do everything that you can.
- [66:51]
A
It's quite interesting if you're talking about exercises. Obviously we have some exercises on the website about how to get up from the floor. And, and there's certain things that you can do to, to sort of help, help you with getting, you know, if you have fallen, how, how can you race up easier? But then I guess there is a few sort of strength exercises we can do to try and prevent falling. I mean, we're talking about all kind of levels of accessibility. When I started running, and I certainly know that I'm very privileged to be able to run and not everybody does it, but when I started running, I would have a lot of falls because my, my hips weren't strong enough and my glute muscles weren't strong enough. So I would, especially if it was slippery, I would tumble so much. And I started doing like those type of strengthening exercises and now touch wood, I don't fall over very often when I run. And I feel like certainly made a huge, big difference. So I feel like there is stuff to work on. Even if we, like you said, we have to just accept that sometimes we will fall, but there are maybe proactive things that we can do out there as well.
- [67:53]
B
Yeah, definitely. I mean, I remember at one point after a relapse, my, my mobility got bad enough that I actually was using a walking aid. And then I ended up doing quite a bit of physiotherapy, so went through with an MSK and neurological specialist physio that I was referred to, and they helped me out with a bunch of exercises that I could do with them in the gym, but then also things that I could do at home. And that absolutely transformed things for me because I went from really struggling to do things that I loved, like hiking, because I was using a walking stick, to being able to kind of reclaim that and manage that pain and significantly reduce my pain, but also increase my mobility back to a level not akin to what it was before, but certainly towards it and in a really positive way.
- [68:43]
A
That's amazing. I do feel like it's, you know, Hillary was kind of jokingly saying about the boring physio exercise. And I think a lot of people, including myself, when being given exercises by physios, you sort of think, yeah, I don't know. Because it doesn't. You don't do it once and then notice a difference. It takes a little while to build up. So it's really, really kind of an investment for the future, isn't it? And it's, it's difficult sometimes to look at it like that, but it's really worth sticking with It.
- [69:09]
B
Yeah. Especially when, you know, if the exercises are hurting in the moment as well. It can be really difficult. It can be so defeating to feel that pain. But then if you're feeling that strength and you're like, you're seeing a difference after several weeks, you know, one of the things I was seeing was like, certain muscles were not engaging correctly or were not responding or very delayed. And you can very much see that nerve damage because of how delayed the response was on my left hand side and seeing how big a difference it meant by strengthening those muscles, especially some of the smaller muscle groups that you don't use, necessarily without doing a specified exercise. It just made such a huge difference to my quality of life.
- [69:49]
A
Excellent. One thing we touched on when I spoke to Hillary was the fear of falling. Falling. One of the team members sent me this research paper which is called Fear of Falling and Falls in People with Multiple Sclerosis. And it stated fear of falling is a widespread problem affecting about 60% with multiple sclerosis. Inflammatory lesions in the brain are caused by the disease, result in gait deficits and increase the risk of fall. Fall falls into. Induce fear of falling and trigger a vicious circle, which in turn increases the likelihood of falling. Is this something that you can relate to? Because I feel like I can definitely relate to this.
- [70:31]
B
Oh, definitely. I mean, the stairs are always one for me going down the stairs, particularly if I'm holding my daughter's hand. I mean, I can't remember the last time I didn't hold the handrail and I, I never would have done that before. But that fear of falling has definitely made sure, sure that I've got that extra bit of support when I'm going down the stairs because, yeah, I just don't want to imagine what will happen if, if I were to fall, especially if I'm holding her hand.
- [70:56]
A
It's, it's, it's terrifying when you get things like that sort of in. I, I tend to overthink things quite a lot and if I'm struggling with vertigo days, I'm very bad in places like supermarkets or where it's really, really busy because it feels like every. Everyone's coming at me and I feel like I'm. Even though I'm sort of standing still, I feel like I'm wobbling all over the place and, and it sometimes can just be to the point where I'm thinking of going down to, I don't know, Tesco, Sainsbury's or something, and I just start thinking, oh, I'm just. No, I'M not going to bother with it because I know that I'm gonna fall over or something is going to happen. Very rarely have I actually, you know, stumbled in a supermarket. Generally you have your trolley with you to hold or something. But, but, so, but it is a lot of that is in your head. So I can fully understand this research, that it becomes a bit of a circle and it's quite hard to break out of that.
- [71:48]
B
Very much so. I think so much of it is just on that unconscious level of your brain and trying to combat that is so difficult unless, you know, going back to what we were saying before about that, that kind of crime scene analysis and that analysis of falling and making sure that we are aware of what actually makes us fall so that we can try and reduce and mitigate that fear as much as possible. Because ultimately that fear is what is leading us to be more likely to fall in the first place. And that's what we want to avoid.
- [72:16]
C
Yeah.
- [72:17]
A
I love the tip that Hillary was given about Junior. Go to YouTube and just find a video of somebody walking down supermarket aisles and then like stand and walk on the spot and try and do the balance exercise while you're doing it. And I thought, I never thought of doing something like that, but, but it, but it sort of makes sense because, because it is that kind of overwhelming of like, lots of things to look at and, and people coming at you and other people who can't, you know, they don't have a driving license for their trolley maneuvering. I don't know.
- [72:48]
B
I love that. I absolutely love that. It's, it's great though, because, I mean, if you take yourself out of that moment, particularly if you're concentrating on it, if you're feeling vertigo, if you feel like, you know, the room is spinning or you, you, if you do feel like you're wobbling a little bit, I think just taking that moment for yourself to kind of recenter yourself and take yourself out of that sort of mind frame of being overwhelmed, that can really, really help.
- [73:13]
A
Yeah.
- [73:13]
B
Please do remember that if you've got any questions about Ms. Or anything relating to what we've discussed and the topics that have been in this podcast, we are here for you each and every day. Our helpline is available Monday to Friday except UK Bank Holidays from 10am to 4pm you can call us on 0800-032-3839.
- [73:30]
A
And you can also find us on Facebook, YouTube X and TikTok and Instagram and you can leave us a message. Tell us perhaps what you thought of of this podcast. You can listen to this podcast in places where you would normally listen to a podcast like Apple podcast, Spotify and YouTube Music. Please let us know what you thought of this episode and do you struggle with falling? Maybe you would like to share your story about it. Do get in touch with us. You can either send us a message on social media or you can drop us an email on comms trust.org thank you so much for co hosting with me, Steven. It's been fun.
- [74:07]
B
Thank you for having me. I really do appreciate it.