Nick:
Hello, I'm Nick.
Helena:
And I'm Helena. And we both work at the MS trust, a charity for people affected by MS in the UK. Our job is to help you make sense of MS.
Nick:
Yeah, and welcome to our podcast, multiple sclerosis. Breaking it down. Anyone who's new to listening to us, hello, and hello to everyone who listens to us every month as well. It's great to have you on board with us. And today, we're going to be focusing on mobility aids and getting to grips with using their mobility aids specifically. So this will be the episode for you, if maybe a health professionals told you to start consider using something like a walking stick or a wheelchair. But you just don't quite feel like you're ready for it yet. Maybe you're noticing changes to your walking, and you're wondering what you can do about it. So in this episode, we're going to talk a physio Laura is from neuro heroes. And she's going to talk to us about aids and why they're helpful and why they can really enable you to do more things. And also some ideas about how to shift your perspective so that you can get to grips with using one.
Helena:
And speaking of shifting your perspective, I also spoke to Hayley who's also known as my_sassibility. If you're on Instagram or Tiktok, who's a fantastic lady that we spoke, we started following her a while back. And we've been sort of really wanting to do stuff with her since then, because we just thought she was She's great. She talks, talks a lot about her MS journey, and how she got to terms with having to start to use walking aids.
And but before we start if you want to learn more about mobility problems, it's we've actually already done two podcasts episodes on the topic. And they're linked to in the show notes. So be sure to check those out.
Nick:
Yeah, you're saying that Hayley…Helena, I know she's a really big character, isn't she? So yeah, as you say you we really were both really looking forward to having her on board weren’t we? So yeah, she's amazing, isn't she?
Helena:
Well, we actually interviewed her last video first, and then after we done that we were like she needs to be on the podcast as well, because she's just amazing. We love her.
Nick:
Yeah, absolutely. So in terms of information as well about mobility aid, walking difficulties, of course, you can head to our website. We'll talk a little bit more about exactly what you can find there later on. But as we say, we've got two great interviews two amazing guests who are really lucky to have this time say, let's get into it. So first, we're actually going to head over to Helena’s chat with Hayley. So let's see what my_sassibility has got to say about mobility aids and mobility.
Helena:
Today, I am here to have a little chat with someone that we found on Instagram. I know she's also on Tik Tok, and it's the absolutely fabulous my_sassibility Hayley. Hi, Hayley.
Hayley:
Hi, how are you?
Helena:
I'm good. Thank you. Could you for people who don't know who you are, could you just start off by telling us a little bit about yourself?
Hayley:
I'm Hayley. Yes, my handle on Instagram and on Tik Tok is my_sassibility. I call myself Hayley Sass ability. I just want to get the word sassibility out there. Because I have a disability, which we all know is multiple sclerosis. But I've turned it to sass and my sass shines through over my disability. And I'm a 36 year old mum of one. And I've had multiple sclerosis for 23 years this year.
Helena:
Were you diagnosed really young then?
Hayley:
Yes, I was diagnosed at the age of 13. Well, I officially got I started getting ill at the age of 13. And then it was kind of just after my 14th birthday. I was then actually officially diagnosed with..rapidly evolving, severe relapsing remitting. MS.
Helena:
That's a mouthful
Hayley:
Yeah, its MS. Whatever you call it, it's MS. So yes.
Helena:
This is true. So how was that? I mean, obviously, that must have been super hard when you're a teenager you go through with so much stuff anyway, hormones and school and whatnot. I mean, how was that?
Hayley:
It was incredibly challenging, but it was very rapid. I literally woke up with severe pins and needles in my feet. And these pins and needles just didn't go away and went to school and carried on my daily life. And anyway, within a space of a couple of days, they travelled up my legs. And they travelled so far, within a week, I was then admitted into intensive care, because I was paralysed basically from the neck down, and my lungs had stopped working. And so I lost function of everything. And it was all in one go. So I was being assisted to breathe in intensive care. And then I spent a solid four months in hospital. Obviously, the teams are trying to establish what was going wrong. And at first, My diagnosis was transverse myelitis. But I relapsed again, and through the lung functions and MRI scans, they could see it was a very rapidly evolving quick succession of multiple sclerosis that was happening to me. And, yes, I was a teenager, but I just didn't know what was going on. I was in hospital. And all I wanted to do was be well and get out there, but not knowing what was ahead of me.
Helena:
No, I mean, once they've sort of said it was MS. What support did you get? Did you do you sort of, did they start you on any treatments because you were so young.
Hayley:
All I remember from the time I just pumped up with steroids as far as I could know, actually in hospital, I put on a lot of weight. But obviously, that's steroid weight, and everything else. And the support I got, I didn't, I didn't back then that was in Year 2000. So as much as I remember, it was mainly my mum and my family that were my support network. I didn't. I didn't feel other than obviously, the doctors and nurses, I didn't know there was other networks out there that can support me. And we were just trying to get my myself well. And my focus then was just to learn to walk again. But I didn't know whether I was able was going to be able to walk again. And I thought then my life was just going to be just a wheelchair user from then on. And obviously, everything that came with that, you know, my family were upset and I was upset. Everybody was everyone was upset. But as a teenager, weirdly. All I wanted to do was get back to school, and literally just walk again. And I felt I could walk again. I felt no hang on a minute, I need to started coming back and they did and things start to get back to normal. And I learned to walk again. Went back to school and then carried on with my life but then relapsed again quite quickly within that year. And then yeah, the official diagnosis was the multiple sclerosis.
Helena:
Did you manage to get back to school eventually then or?
Hayley:
Yeah, so I did, I got back to school. I got myself out of the wheelchair and I went to school on crutches and I just continued on crutches for as long as possible, and then eventually weaned myself off crutches. I was back walking again. So yeah, I did I felt like I was just gonna be normal, but I just think looking back then and it was kind of like, oh, well, that's, that's done with now. You know, I just need to focus on the school. So in a way when you're when you've got that naivety as a teenager you just carry on don't you? And then I just then when problems started again as in optic neuritis, you know waking up not being able to see out of my left eye and the fatigue was getting to me when I was at school and then the cramps and you know, I say kind of semi paralysis again because it wasn't full on paralysis it was like semi you know, I couldn't really get my legs to function properly but they were functioning I just dealt with them as and when and then MS nurses, they were quite good you know as and when I did have a problem it was like right we need to go and get your steroids again you need to come in we need to do intravenous methylprednisolone and all that so yeah, I was walking again but just dealing with problems along the way.
Helena:
What was it like being in school at that time? I mean were the kids.. like we know kids can be not always the kindest to each other.
Hayley:
I suffered with bullying throughout school anyway even before I got ill I was bullied quite a bit actually. And then when I went back to school it kind of..when they could see I was on crutches and what have you, things didn't really nothing I felt like was said or anything but then when I looked normal again yeah, my bullies just came back at me. And that's but that wasn't because of my condition or anything, it was just because of me. Yeah, so yeah, I was bullied all through high school, which wasn't pleasant. But hey, ho, you just have to get on and deal with it, don't ya? And I managed to, I managed to deal with it on top of MS. I don't know, I just, I didn't I didn't enjoy high school very much. I just couldn't wait to leave.
Helena:
And once you are out of school, how did sort of life and MS move on then?
Hayley:
So it moved on. I went to college for a few months, but I wanted to work. So I just got out into the working world and started to work and then each thing is a normal teenager you progressed and aimed towards. So like learning to drive a car and, you know, saving up for well going out at the weekend and stuff like that. So MS. In retrospect didn't bother, bother me as much sort of back then I felt like I could I could do anything. I felt I was back to normal again. And I was it kind of let me build up my strength again. And I remember feeling tired and the exhaustion, but I just kept going like I don't know what it whether it was adrenaline or just going out with my friends or what but I do keep going. But I did have my relapses up and you know, up until the age of 22 ish, roughly and I was then on different dmt’s So I started a rebirth for self injections and then Copaxone self injections, and I was doing all this. But still, I was getting relapses, I still things are still sort of slowing down. So it was a turbulent time with regard to my health. But I did just try and carry on the best way I could. And yet using crutches now and again when I needed to. But then when I was poorly, I would just stay in the house. Like I didn't, I couldn't feel like I could actually get out and about, you know. So I suppose back then I will probably lock myself away a bit more. If it was not feeling particularly great. Not because I don't know not because I was…Well,I think my mum, because I remember my mum saying like, even when she wants to take photos or whatever family events or anything like that she never really... I always said I never really wanted any pictures of me in a wheelchair. So I actually have no pictures of me sort of back then using mobility aids or my wheelchair or anything. Because I suppose that stigma was more back then.So yeah, maybe still now. Whereas now I've turned on its head. It's like I'm just like I need I need this stuff. So if you want to see me out and about and if you want to be my friend and we want to go out, then I have to bring all this stuff with me.
Helena:
What do you think made that change from sort of really not wanting to go out and show that you're having to use mobility aids to like really doing what you're doing on social media now?
Hayley:
Well, when I started Tysabri,that was a brilliant infusion for me. It really was because when I started that I now know knowing how I've been the past year or so I now know how much Tysabri protected me in both relapse rate. And also actually my symptoms. I always used to think that Tysabri didn't protect me from symptoms. Because I still have bits of things going on, you know, it was like the fatigue or what have you, but my mobility was far better.. you'd look at me and you wouldn't even think there was a thing wrong with me. And that's what MS can be like for a lot of people and that's how it was for me. You know, I had a disability but I didn't think I had a disability and yet I look so normal. It's invisible. So I literally I did in all honesty carry on my life as best way I could over the past like 14 years. But when I was unwell or when I was fatigued or tired, I still did lock myself away because I couldn't get out and where I live as well live out in the countryside here. And I've been here for a good 12 years. So it's more difficult actually to get out and about places and driving and stuff. So if I needed to get to the shops, it's you know, a six mile drive and stuff. So if I'm unwell and my legs are not feeling great. I won't drive so then I’d keep myself in. But now it's changed. It's changed dramatically in the past year. Because when I had my relapse last year, my right side is a lot worse now. My speech has gone a bit funny and my fatigue levels have actually shot through the roof. I can't believe how, how much I've changed, but I've changed EMTs as well. And maybe that's got a bit of a change, and I had a bit of an effect on me. And because of my personality in the way I am, I just thought, no, I refuse to stay in, I will get my wheelchair back out and I will get all my you know, I had crutches and I was using them but I was using mainly the wheelchair through my last relapse. And my mum flew over because they live in Manchester and I live in actually live in Northern Ireland. So my mum flew over to help me, um, you know, everybody around me who's trying to help me as well just get out and I got my wheelchair. And it was a bog standard, not very aesthetically pleasing, heavy cumbersome wheelchair. And I decided to make it look as pretty as I possibly could. And I upcycled it and put glitter all over the bits that I could get glitter on to, change the cushions and make it look really glamorous. Because I thought No, I still want to remain me. And I still want to you know, look good. So, for me, I thought well of using this chair, and making it look pretty. So I need this chair, and I'm using it. So yeah, for me now that is totally changed. Because it's…why should I have to stay in the house? Why should I have to lock myself away? Why should I on the days I feel great. Or better, than I'll use my chair, I'll get out there and get you know, just enjoy life. I do have an electric chair as well, because I suffer with weakness in my right arm quite a bit as well. So you know, when I'm using my wheelchair it can cause problems with my right arm. So having electric one as well. And that's amazing, you know, or just use a mobility scooter. It just takes pressure off me. You know, and then my crutches and my walking sticks. They're glamorous, too. So I've got leopard print crutches. And I've got a sparkly black walking stick. So mobility aids and now just my accessories, see them as my accessories now.
Helena:
So do you think actually thinking of it like that helps a bit?
Hayley:
Yeah, totally. Totally. I've actually chosen my next wheelchair, my new wheelchair, which is still delayed, but my next wheelchair is going to be a lightweight fixed frame one so I can get it easier in and out of my car, and what have you. And I was so conscious about what colour I chose, because I kept thinking, I don't want it to clash with my outfits.. I was going to go for a pink one, I was like, and I want to wear, you know, certain different colours, that's just gonna clash.
Helena:
Somebody needs to invent like colour changing. So you could just like push a button, and then it would go.
Hayley:
I've gone just for a plainer wheelchair. But the decision on it was because I didn't want it to clash with certain outfits. And I want also as many different coloured pairs of crutches and walking sticks as I possibly can. Because with MS. We all know, well, for me, my MS is very dynamic, it's very much all over the place. Yes, I use my wheelchair, daily, you know, out and about and doing shopping and stuff, I will use my wheelchair because it saves my leg. If I overwork my leg, as you know, so walking or, you know, trying to get up and down the stairs and stuff, it goes dead, it just stops…you do feel like a switch has just been set off, you know, and I want to stay on my feet for as long as possible. But my body can't do what I want it to do. And so therefore, I’ve accepted the fact that okay, I will just sit down, give myself a break and continue my life using a wheelchair, or my crutches or my stick. I will use what I need on the day.
Helena:
Let's have a little chat about your social media because you're very active on social media. That's how we found you. What messages are you trying to sort of get out on social media?
Hayley:
Well, one is to educate a little bit more about MS. Two is because I use mobility aids and because I am a wheelchair user I very much I'm very vocal about trying to change perceptions of how people are viewed when you have a disability. So for me, it's a case of, I will still remain me as much as possible using my mobility aid. But the other thing is that I found that I'm also quite vocal about is access into places. So for me when I post that I do say if we are not seeing, we are not heard, for me that meaning is, if I'm not seeing out in society, using my wheelchair, then people like myself, my needs won't be met, my needs to access a shop, my need to freely, you know, manoeuvre myself around, up and down streets and high streets and whatnot, they're not going to be heard. So I think the more of us that are wheelchair users and mobility aid users, the more we just go out and enjoy life as best we can, the more our voices will be heard with regard to access into a lot of places. And for me, as well, the way the world is, is media plays a massive part in that.. it's massive, you know, we see hundreds and hundreds of images on the internet and on the TV, and I want to be represented. So those are all swings and roundabouts. If you don't see me, you won't know that there's a need for me to be represented. Whether that be clothing, you know? What? Yeah, mainly clothing. The way you look, you know, your parents, job, actors, actresses on the TV, why is there not more on the TV? You know, so for me, it's a whole big bubble of see me. Look, look at me see what I need to enjoy my life in society, but also represent me.
Helena:
I think that's, that's so important. We spoke a little bit before I press record, on sort of this whole thing about being seen out and about with a wheelchair, because I, when I was little my granddad he was had MS. And he was in a wheelchair. So I grew up with thinking that wheelchair, that was great, because that meant my granddad would come with me out and we would have, I would get up on a little... like an office chair, we would have races, you know, it was for me, it was just like, that was the cool granddad because he had wheels, you know, it was it was awesome.
Hayley:
It's great. Yeah. And she said, when she grows up, she wants a blue wheelchair, you know, when as much as I know, within your heart. And within us, we want to all be able bodied people. I would like wheelchairs to not be seen as a negative thing. You know, you're only going to cause yourself more harm to your mental state and your body if you refuse to use something that will help you go out and enjoy life. Yeah. And I think it's wonderful, you know, the likes of, you know, Mattel that have brought out the wheelchair Barbies and, and people that look different, because we don't all look the same as humans, we don't all look the same. So I think it's wonderful that you grew up with your grandfather, who, you know, used to use the wheelchair, and it was normal for you. And not just these are just normal. And so my daughter will grow up with, oh, well, my mummy uses a wheelchair and she doesn't think anything about it. You know, it's not like a big thing. Whereas other children, you know, they're all inquisitive. And when I'm out and about and if especially in my electric wheelchair, like, that's an amazing thing for them to see. You know, they look and they, you know, her little children go, what's it? What's that? What's that over there? Or? And when we look? You know? They're inquisitive. They want to know what I mean. I don't mind if, if a little child comes up to me wants to know about it and stuff. I'll tell you know, my leg doesn't particularly work well, or whatever like that. So, you know, if we see more of it, maybe it's just becomes more normal. I was recently in Florida, and the accessibility over there and how they are with disability is amazing, I know its a tourist attraction. And I know obviously, it's a lots and lots of people, lots of majorities of the community altogether. But the amount of wheelchair users that I saw, the more I saw it, the more thought got I feel just so normal. I don't feel like anyone staring at me. I don't feel like anybody's thinking I'm weird or anything like that. It just was just normal. And I would like to see that here. You know, the more I see it, the better I will also feel for my own mental state to be thinking, Well, do you know what you're just getting on with your life? And I'm just getting on with mine and enjoying it.
Helena:
Do you feel like the last few years though, like you were saying about Barbie bringing out things and we're seeing a little bit more. We're still not masses in the media, but that either has actually gotten better?
Hayley:
Yes, I do. I do think it has got better. There's more things that are being seen on the TV. I've recently appeared on a TV show.
Helena:
Tell us about that.
Hayley:
Yes, a crazy thing now. So yeah, I yeah, I appeared on and sundeck Saturday night takeaway, and that was a bit of a random five minutes. I'm a wheelchair user. I was on a show. And it's on TV. Yeah. So it's lovely to see that this, you know, we are actually being included in thing. And it's that thing. It's inclusion, the fact that we still need to be included in society. So yeah, again, it's like if I am not seeing I have not heard. So hello.
Helena:
I think it got quite a lot of media coverage as well. I've seen some articles about you, you
Hayley:
Yeah, Im from Manchester, but I live in Savannah, which is Northern Ireland. So yeah, a few, media platforms picked up on it. So yeah, it was brilliant. And it was wonderful and such an incredible experience. But there you go, you know, theres are wheelchair user on TV, you know, and just for all the wheelchair users to see, I'm sure it'll, I'm sure it's comforting to see. And I am seeing a bit more going on the TV. And there's more in the clothing industry that I can see. So it just needs to keep going. It needs to not be a token it needs to be, you know, so in the past, I've always felt that it's always been a bit of a token gesture. And that was even before I've been using my wheelchair more, I've always been conscious about it. Because obviously, the type of disability we have, we're all very conscious of, you know, your legs not working properly and what you're going to need to get around and stuff like that. But yeah, I've always thought of disabilities always seems to be like a token gesture somewhere. Well, no, I don't want to be a token gesture, I want to be a member of society that is listened to, heard and seen. So get yourselves out there. If you use mobility aid, and you're not giving in I always say that you are not giving in to multiple sclerosis, you are not, you can fight and fight and fight and fight. And I still fight and fight and fight. But I have a condition that's not yet cured. So therefore, I'm just I'm just actually hurting my mental state. If I refuse to do the things that are if I use if I refuse to use the things that will get me out and enjoy life.
Helena:
Yeah, I remember a few years back, I interviewed a chap who was saying he was sick, he was to look at his wheelchair and almost growl at it. And then when he actually finally realised that this wasn't his enemy, it was actually a friend that would sort of get him out of the house and get in doing things. I remember he was to take his daughter to dance training, and they would have like a little boogie while he was in the wheelchair, and she was dancing. And she just wanted to go out with her dad, you know, she just wanted to do stuff. But it was just kind of overcoming the fact that this was not the enemy. It was actually an aid to help him. It's a tool. Do you have any sort of tips on how to make that shift? Because you said that you felt that way before as well?
Hayley:
I did. Yeah. Because if you know, like I say everybody wants to be an able bodied person. But if you're struck down with a condition such as ours, or anything similar, then I feel for you to be happy within yourself, you need to be able to learn to adapt to a new way of living and a new way of life. So for me my tips really are accessorise, your mobility aids to your outfits. Have fun with it. Enjoy. Yeah, you know, just try it. I'm not saying that the world is so easily accessible because that's
That's the crux here, again, if I'm not seeing out in my wheelchair, then establishments are not going to change. But they need to change because you need to see me. Yeah. So let's get out there, let's save our bodies, prolong your happiness in this life and use whatever aid you need on that day. That's mainly how I look at it because I don't want to sit inside and I don't want to mope and I don't want to. I have suffered with depression and I don't want to go down that road. Yes, things are challenging. And things are not always rosy all the time. For me, they're not you know, I do struggle with in-accessibility of places. But I'm making the effort and my daughter is enjoying her life because I'm doing my best. And again, for me, my motivation, my daughter as well, because I think I still want to be her mum, I still want to be the Fun Mum, I still want to get out. I still want to get to the park and stuff. So for me, those mobility aids come along. And actually, she likes the fact that Ive got a wheelchair because all around Florida as I was being wheeled around all the parks and everything. Where was she? She sat on my knee because her legs were aching as well. So there you go. I have my uses.
Helena:
With all the sort of social media and everything that you've been doing, and it seems like there's been quite a lot of positive things. But has there been any negative comments?
Hayley:
The majority is a lot of love. In fairness, yes. But I have had negative comments about the fact that I'm a wheelchair user. And the way that I look, and the two have gone hand in hand, because there was a colleague of my mother's who she used to work with last year, and I had gone for a tanning modelling shoot, advertising false tan. Now I'm a false tan user, but I'm also wheelchair user. So they were advertising me using the tan with my wheelchair. And my mother told her work colleague about this. And this particular work colleague could not quite believe and always shocked and amazed about the fact I was using fake tan and doing modelling. And she turned around and said to my mum, what does she want to use false tan for she's in a wheelchair. And then very, very, quickly retracted the comment, because my mum was so upset, and I had basically not so much question, but she then questioned, but she knew this work colleague knew what she had said, was so offensive to me, and so derogatory. Why wouldn't I want to wear false tan? Why wouldn't I want to make myself look nice? Yes, I'm a wheelchair user, but that shouldn't even come into it. I'm a woman that likes to look nice. So why not?
Helena:
You are in a wheelchair, but you have legs. And if you want to put tan on those legs, then what's that?
Hayley:
I want to make them look nice. Actually, I think I've gotten far enough like, I just, it's just one of them doesn’t work properly. Let's just say that. So yes. Why wouldn't I want to put false tan on this body of mine that I still love that I still am alive and existing. Why wouldn't I? It amazes me perceptions amaze me. You know, comments and comments. I know people mean well, but I've had comments in the past of, Oh, it's lovely to see you out, well done. It's great. You're out. I'm like, Yes, I'm out. Yes, I'm out. Yes, thanks. You know, being praised for doing my daily tasks is a bit weird. But people mean, well, yeah, it's just, it's a bit weird sometimes.
Helena:
I've actually I've seen quite a lot of people who use wheelchairs to sort of talking about how people talk to them. I know we had a story before about a carer who said when he took his wife out, he always sort of used to make a point of standing in a certain way. So they would have to look at both of them because otherwise they were just looking at him and not talking to his wife.
Hayley:
A wheelchair doesn't make me inaudible. And it doesn't make me unable to hear. Yeah, it doesn't. I'm still a human just sat down. I mean, we all sit down. Yeah. You talk to somebody different just because they were sitting down would you. Remember, it's just a chair. With wheels on? Yeah, that's it. That's all it is.
Helena:
You're saying about modelling though. I think there's been a lot of companies that actually really do try to do much more diverse models now. I mean, it's growing up in the, in the 90s, where pretty much all models looked very much the same, it was very same size they look, you know, I feel like now when you look at things like I don't know, you go and look at the sports, sports websites or anything like that there isn't just like the one look for people.
Hayley:
Yeah, its starting to change. But I think there needs to be far more, I don't know, you can always push it a little bit more, because I think it's only just starting really early. And it'd be nice to see more representation of every single body shape, form type, you know, ability, it really is because then that is my point. If I'm not seen then we're not heard. So we have to see everybody, let's see everybody, we're not just one type of person. And that's how I am you know, that that's me. And I've done a little bit of modelling and let's see if things can change, you know, for others out there and to feel represented because I want to feel it.
Helena:
During MS Awareness Week, we're going to be talking a bit about mental health and MS. And we did a recent big survey at the MS trust, where it was revealed that about 76% of the people who responded that changes to their mobility and walking had affected their mental health. Like for you when you're out and about I mean, does that make you feel happier? Seems a little bit silly to say, but how does it sort of affect your mental health?
Hayley:
When I'm out? Gosh, it's it's amazing. I feel. I know we shouldn't use the word normal because what the normal, but I feel, I feel me I feel like Hayley I feel great. I love the I love socialising I love getting out and about, I don't do it every single day, some days you do want to just be at home and enjoy your own space and what have you. But I feel lighter, and I feel happier being out because being out and socialising with people, releases all those happy endorphins. And locking yourself away is never a good idea. And I did do that in the past and my mental health did suffer because of it. I really struggled. I really struggled a lot with mobility, I was frustrated with my body. I was frustrated at the fact that my leg gave up on me that my balance kept going, that my fatigue just wouldn't let me mobilise myself. And then I just thought, you know what, why am I putting myself through this? Why am I cutting my own happiness short by not going out? So being out and about really does help your mental health.
Helena:
When you were struggling and sort of was still staying inside? Did you ever reach out to anyone and sort of say, Look, I'm struggling?
Hayley:
Well, I had a bit of a breakdown. So it kind of all got to a head. But it wasn't, if I'm honest, it wasn't just the fact that it was my mobility. It was a lot of other health issues that were going on that kind of got me and family were my biggest support. And my friends. Were my biggest support. I let it build up to the fact of you know, I'm okay, I'm fine. I'm fine. I'm fine. I'm fine. I'm fine. I'm fine. And I'm fine. And then it just hit me. I'm like, No, I'm not fine. Actually. No. And I did I just let it all out. And I cried. And I just told everybody like it is. For me telling my family. Look, I am struggling here with my mobility, please. Not that they were but in my own head. I feel like members of my family are still expecting me to carry on like I was a few years ago. You know, they do they? Oh, you know, Hayley do you know we don't want you to be in a wheelchair and I don't want to see anyone and I'm like no, but and this was like my grandma, you know, it was like no, but grandma, my wheelchair helps me and everybody needs to understand this around me. So for me that that that that moment in time was okay, stop being down about it. Let everybody know, tell it like it is let everybody see that how upset and down I've been and everybody now needs to see me Hayley as a mobility aid user now and carry on
Helena:
Is there anything do you think that we as MS organisations. Now, speaking of because we're kind of trying to work together during MS Awareness Week.. Is there anything that we can do to sort of try to I don't want to say because you already said don't let's not use the word normalise. But you know, is there anything that we can help out with do you think to make this less of a stigma?
Hayley:
Good question. Oh my god. You are all doing a great job anyway, you know, you will release, you know, things in the media, you do things like this so chatting to MS sufferers.. you put me on the spot there!
Helena:
Well, it's good, we’re doing a good job!
Hayley:
You're reaching out to everybody in the community, the fact that you connected with me via social media. And social media is so powerful, you know, everything, information, everything out there is brilliant. So keep doing that, you know, keep putting blogs out, keep putting posts out, and represent everybody with multiple sclerosis in every shape and form. I think that's, that's important for me, because the thing that I actually get caught up about, and I do get a bit upset about is as much as it's brilliant. And I am not going to take this away from anybody that has multiple sclerosis, because you are doing the best you can do. But for me, sometimes when I see too much of the, oh, look what I've run today, you know, I've run 10k, or I've gone up this mountain, or, you know, I'm doing this and about marathon, this that and the other. For me, sometimes as a wheelchair user, and the way my condition affects me, that can really make me so upset, because I beat myself up and thinking. Why can't I do that? Yeah, you know, so representing all the shapes and forms of multiple sclerosis, across the board, I think will help a good number of people. And it's not to be negative. To show, you know, somebody that is a wheelchair user, because I know there's people that are worse than me, you know, when that can sometimes upset me. But then I still remember, that's your MS. And I know my MS. So I know what I need. And you know what you need. So representing everybody. Again, it's this representation. Again. It's showing it in all of its dynamic forms. I think that’s the best thing
Helena:
I think is so important that we're we've been talking so much to a lot of people recently about representation, because it's it was very much like, what when I was diagnosed, the only person I knew with MS was my granddad. So I sort of thought it was an older person's condition, you know, and he had a chair. So I mean, it's, it's all and then predominantly before we saw white people, but we know that, you know, it can happen to anyone they say that MS doesn't discriminate. And it's true, isn't it?
Hayley:
It absolutely is. So that, yeah, you it's representation in all shapes and forms of the condition. For me, I like to see a good range.
Helena:
When I was first diagnosed, I think I was sort of given that sort of..calm me down session from I don't know if it was the neurologist or nurse where they were sort of giving me some stats about what you know, only so few people end up in a wheelchair. I think we've moved away from saying that now more and more, but I still see it being bandied around. How does that actually make you feel when you see or hear that that sort of stats?
Hayley:
A bit sad because it's seen as a real negative thing and a wheelchair is seen as a real negative thing. It does make me sad, because I think when I was diagnosed as well, my mum was so upset because she did see the wheelchair and that was it. It was oh my god, you know, you never gonna walk again. But I showed everybody wrong. And I did because that this condition is so unpredictable. And it's so strange. You never know what could happen with it. So, you know, I prove them wrong. Now, I want if somebody says, Oh, you know, you're in a wheelchair, and I'm like, Yeah, I am. But I can stand up. And I can still technically walk. But I cannot walk far. And I might just fall over. So yes, I am sat in a wheelchair. But I can sit on that sofa if you'd like me to I'll just transfer himself. Oh, mobility aids thats being mobile. You know, I know. I know. You know, we know wheelchairs are used for many different reasons or well they should be seen that's the that's what it should be seen as being used for many different reasons. I know there's a lot that are unfortunate that you know, they are unable to move their legs and cannot stand up and so therefore you know they use their wheelchair far more, what have you but I would just like it to be seen as not just that one for If that makes sense, and I don't want to be disrespectful to anybody, I really don't want to say that. But a wheelchair user is precisely that they use a wheelchair to get around and I can use my wheelchair but I can also use my crutches I can get out of it. My wheelchair are my legs when my legs don't cooperate.
Helena:
My final question because I love the name of your account. And I feel like we can all do with a bit more sass in our life. Tips just about like how to count how can we all get a bit more sassy?
Hayley:
Pimp your wheelchair for start, get your mobility sorted first. And for me, I used to be a beauty therapist. So do throughout my working life, I was a beauty therapist. I'm all about trying to keep yourself looking well and healthy and etc. And sassiness to me, is being happy with who you are, and celebrating your body in all shapes and forms. And I know it's I don't have to be vain. But I do my hair. I do my makeup, my lashes my nails my tan. All this stuff helps me to feel sassy. Like, yeah, that's as a woman. That's all I want. I want to feel a bit I want to feel sexy, I want to feel feminine, I want to feel all those things. So for anybody that wants to get more sass in your life, look in the mirror, think to yourself, I love me, I love who I am. And wear what you want to wear, get out there and enjoy life and be a Queen or a King! It's just making the most of what you can on the day and wear whatever you want to wear that makes you feel happy. It's all about happiness. All we want to be is happy. So if you want to wear crazy colours, go wear crazy colours if you want to, you know, that's sassy. That's being sassy. That's owning who you are.
Helena:
I love that. Thank you so much for talking to me today. This has been absolutely brilliant.
Hayley:
Thank you, Helena. I know it's been lovely for me. I always enjoy talking.
Helena:
Now, if this was a commercial podcast, here's where there would be an advert. But as we're a charity, we don't do that. So instead, we'd like to take the opportunity to tell you all about our fantastic resources for people with MS.
Nick:
Yeah, that's right, Helena, our website MS trust org.uk has loads of information and resources for anyone affected by MS. That does include people caring for people with MS. People who live with MS. People who are part of a family where someone lives with MS. So do head to our website, there'll be something for you there. And specifically, the best place to go is our A to Z of MS. So there we have lots of entries on loads of different topics for people affected by MS but also specifically for mobility problems as well, walking problems and any related symptoms such as you know, things like foot drop or spasticity to name a few. So do have a look on there, you can go to MS trust org.uk and find that A to Z or you can do forward slash A to Z forward slash walking difficulties.
Helena:
And now over to Nick and neuro physio, Laura Douglas.
Nick:
Hi, everybody. Welcome back. Today we're joined by Laura Douglas from neuro heroes. Hi, Laura, how are you?
Laura:
Hi, I'm good. Thanks, Nick. Thanks for having me.
Nick:
Always an absolute pleasure. Um, for anyone listening. I was wondering if you could just introduce yourself and tell us about your background a little bit.
Laura:
Sure. So I'm Laura. I'm a neuro physiotherapist. I have been for around 13 years. I have worked just purely in neurology for quite a long time now. And in that, I see lots of people with different neurological conditions. But I've specialised in MS. Over the latter part of my career. And I now run neuro heroes which is an organisation where we put on exercise classes specifically for people with neurological conditions and quite a lot of our classes are specifically for people with MS. And we do them all online over zoom. So as well as seeing my clients one to one. I run exercise classes along with other physios that we do online so that people can join in from home and access some physiotherapy as well as advice and support for what exercise they should be doing.
Nick:
Amazing. Yeah, and I remember we first or I myself and Helena first saw you at the MS trust conference where you were presenting and you are showing us lots of exercises and you're just really engaging and really inspiring and motivating. So we must come and talk to Laura, because that was like, just the way that you presented was great.
Laura:
Thank you. Well, yeah, one of our big aims is new heroes is to keep things really engaging and varied, bringing a real playful side to it. So people who are feeling bored or quiet sort of unmotivated have got that boost of energy. So yeah, all our physios are pretty dynamic. And energising that's the aim.
Nick:
Yeah, absolutely. Yeah, definitely. And today, we were talking about using mobility aids, maybe starting to use mobility aids and exploring that whole aspect of of MS. So Laura, you have obviously got lots of experience in this area. And when do you think people should start using mobility aids in their journey?
Laura:
Yeah, good question. And I think with this, there is absolutely no hard and fast rules. There's no right or wrong answer. But I'd say firstly, anyone having difficulty with mobility, it's probably always worth having an assessment with a physio, and neuro physio, preferably, and they might have some really useful advice and strategies that can help improve your walking first off. So I think it's, it's always useful to have that in your mind to be open to seeing someone who might be able to analyse your walking and talk about what, what's changed with it, and what might help you. And I think it's always useful to think about what you want to achieve with your walking. So do you want to walk faster? Do you want to walk further? Do you want your walking to look different or feel more stable, and that might change over time, it might be different at different times of day even. But actually, if a mobility aid helps you do one of those things move a little bit faster, or feel a bit more steady, that I think it's worth considering. And actually, if you're, if you're having a hard time don't suffer in silence, because there are lots of options in this area. And you might not know about all the options that are available to you. So seeing, seeing a professional, before using an aid might really help you explore what sorts of things are available, and that could be helpful to you.
Nick:
Yeah, definitely, I think is so important, isn't it to get that that expert advice, isn't it? And it's sort of specifically from that from those experts from those health professionals? And is there any help that you can get when you're just starting out?
Laura:
Yeah, absolutely. I think often, people might buy a stick or get crutches off their back without seeing anyone, if and when they feel the need. And that's absolutely fine. But health professional can really help in those situations, partly because they can assess what is the right thing for you at that time. So checking is the most suitable device like someone might buy themselves a stick, but actually a crutch might be better for them because it it's has that arm holder, and might help them feel a little bit more stable, whereas a stick might be quite wobbly in their hand. So you can get advice and information on what would be the best thing for you. And actually then adjusting that thing specifically too so getting a stick or crutches at the right height, or making sure that a wheelchair has got the right type of cushion for you. And making sure a splint fits your ankle in the right way that those sorts of things are really important to make it comfortable and for the thing to work best for you. And I think most physios or therapy centres will have lots of things you can try. So having a go is sometimes good because you can think what feels most stable. Sometimes I might take videos of people using different devices and we can look and analyse together what looks most stable or looks like it's helping them the most. So you can try and compare things which is also useful to lots of people. And another thing to remember is the right accessories can make a really big difference. So I've just changed the feet on a client's walking poles so that she can get more grip when she's walking outdoors in the countryside. So little things like that can a make a big difference to someone's stability. And so it's partly kind of the setup and getting the right thing in the first place. And then when you've got that advice, using those things well can make a big difference. So technique matters. Not with everything, but getting practical support on how to use some things in more complex situations can be really useful. So if you think about using crutches, it might change if you're walking up a slope or down stairs, stairs with a rail versus without a rail, those sorts of things you can really learn the best way of doing things to keep you safe. So I think that's really useful when you first start out with something. And on the same card, like seeing a health professional is really useful at the beginning. But I would always recommend seeing someone for a review, you know, after a year or two, chances are something like as you know, the bottom of a walking stick might have worn out I'm sure there's a lot of worn out ferals, we call them on the bottom of walking sticks and worn out wheelchair tires. That actually if we replace those, it helps people move faster and more efficiently. So getting those things like that, too, can make things a little bit safer and work better as well.
Nick:
That's really, that's really interesting in what you were saying there about just changing, you know, the bottom of a crutch or a stick. So it can be used more efficiently, or a wheel on a wheelchair. And I was just thinking actually, just the amount of independence that that can bring for someone who you know, as you say, would want it to explore the countryside, but struggling, but now they can actually access something that they really, really enjoy and they love and they're passionate about. So yeah, it can be so life changing, I guess, can't it?
Laura:
Yeah, totally agree.
Nick:
Obviously, though, Laura, this does come with a real, unfortunately, in the wider community can have a bit of a stigma around people using mobility aids. And there's obviously a huge psychological aspect to this. So we've heard from a few people who have sort of said, you know, they don't want to start using a mobility aid, because they'll feel like they've been MS has defeated them or that they're giving in or something like this. So I was just wondering if you had any thoughts on that side of things, is there any way that we can change the mindset on that?
Laura:
Yeah, I think let's face it, it's totally understandable that people feel like that, it's, it takes time to adjust to sort of a new normal for people. And sometimes things change really slowly, and it's easier to adjust over time. But sometimes for some people, we've got to remember things change quite quickly. And that can be a real shock to the system. But acceptance plays a really big part in allowing people to do what they want to do. And as you said, just then those, those things that you enjoy, and that bring you lots of benefits are so important. And you know, the getting out on about doing social things, doing work tasks, those things bring a huge mental health benefit, as well as allowing you to do things. And I think accepting the way you're moving allows you to be more fulfilled. So let me expand on that a little bit. And anyone that's done any fatigue management, like a course or any education will probably discuss the concept of having this, this battery of energy, and the battery is full at the beginning of the day, and the battery gradually gets used. As you do different activities, when you rest, the battery gets topped up a little bit.
And I'm sure people listening will understand that sometimes that battery gets used much quicker with some tasks than others. So for some people having a shower might really deplete their energy. And they need a long rest afterwards to help the energy for others it might be a really long walk or doing exercise depletes the battery. But we talk about this from a perspective of pacing and trying to pace your energy usage throughout the day. And what we know with MS is that using the whole battery early in the day, or at one time early in the day, makes it really hard to then replenish these supplies of energy. And often people do a lot better, using a bit of energy having a rest, using a bit of energy, having a rest, and through the day doing some movements and tasks but then giving themselves some time to recoup the energy that in itself takes a little bit of getting used to. But generally over the whole day people find that they can achieve more because they're not getting to that little point of exhaustion and real fatigue from doing too much and needing then a two hour rest and lying down or going to bed for example. So in my mind are trying to explain to people if a stick or a wheelchair or a splint on your foot allows you to top up that battery and be more efficient with your energy. I'd say that's a really good thing. So it's an opportunity to make your walking, getting around less effortful, and that in itself might then allow you to enjoy what you're out to do more. So that actually might even allow you to do things you wouldn't even consider before. So being able to go into the office for that work meeting can be really empowering and really help your career or going out for a social thing where you've not used all your energy getting there, because you've used your wheelchair to get there can help you really actually enjoy the company of your friends and do what you're out to do, then if you really used every single ounce of energy, because you want to be on your feet to get there. So all of those things really have a big benefit on mental health. Like I said before, as well, I just think it's so important that we do things we enjoy for all of us. And it helps us get things out of life. And if we can think of these aids more of an enabler than a defeater, then I think that helps, would help people judge themselves less and judge other people's less, other people less as well. And I think, if we can, can really see these, these things as giving us opportunities, rather than feeling defeated, then it might allow people to do more and enjoy more as well.
Nick:
That's amazing. I really liked what you said there about being an enabler. And you know, just completely changing your perspective about how he how you look at these things. Yeah, it's amazing. Yeah, I love that as when you're saying, you know, actually, you're gonna have potentially more quality time, you know, when you're out and about, if you can help you to access some of the things that you love, or just actually, when you are there having more energy, to be able to enjoy those things.
Laura:
Yeah, and I think an important thing of that of your appointment, and that is that, like, you might, having a walking aid isn't set in stone, you might use one aid to get to where you want to, and then something different when you're there. And we can be flexible with this. And that's part of seeing a physio or an occupational therapist, is they can really help you work out how you're going to achieve what you want to achieve and how you want to do it. Because some people might say, I don't want to use a wheelchair when I'm at work, or when I'm out. And that's, that's great, that's part of our job is to work out how we can enable people to do want what they want to do and how they want to do it. But it might be that you could use that wheelchair to get into the office, and then you park it up and you use your splints while you're there. And I think it's a work in progress, it's flexible. And you know, doing things the way you want to do them is really, really important. But getting advice from a professional, you might work out ways that you haven't thought of already to use those things to your advantage, I suppose.
Nick:
Yeah, amazing. And, Laura, in terms of someone who's coming to see you or another health professional, who's actually really, really struggling with the mental side of using a mobility aid, is there anything that you would recommend any services or resources that helps with sort of the psychological side have started to use mobility aid?
Laura:
Yeah, sure. So I think some people might be referred to a psychologist in in this kind of situation, if they were really struggling with the sort of acceptance and coming to terms with things and we know that they're coming to terms with having MS in the first place is quite hard for a lot of people. So seeking support is useful. And you can be referred to various services through your neurologist or your MS nurse.
Sometimes we refer to people refer people to CBT, which stands for cognitive behavioural therapy. And that's more of a talking therapy service. And that can be really useful because it helps to change the way people perceive things or the way they're looking at certain situations. So in this particular example, that can be really useful, seeing an aid as an enabler, for example. So something like that can be useful to people. I would also recommend talking with the MS community. So there's a lot of charities and groups and support services where you could maybe ask people what aids they've been offered and what opportunities that's offered them and what ability they might have gained from it. And sometimes talking to other people about what they've used in their experiences can be useful as well. And it's great that we've got people in there in the public eye. For example, Selma Blair, so really nice to have somebody that we're seeing in the public eye with MS who is using her stick out and about and in photo shoots. And for some people reading an interview with someone like her might be quite empowering and reassuring and give people confidence. So I think there are there are resources out there and opening yourself to talking about it with other people might be really useful.
Nick:
Yeah, we had a story recently a personal story from someone in the community who, who said, you know, if Selma Blair can rock a stylish stick, so can I and I thought that that was just great that actually that message is out there. And yeah, there's celebrities being more inclusive. And it's really important, isn't it to shift that mindset?
Laura:
And hey, you can get jazzy sticks, you can get jazzy splints. I've had patients and clients come in with sticks with fairy lights wrapped around them. Wheelchairs with lights on, you know, you can you can rock this stuff and doesn't have to be boring or look behead. I've seen some very creative walking aids in my time.
Nick:
Our other interview for this podcast is with a lady called Hayley who's on social media is my_sassability. And she's all about accessorising mobility aids, and, you know, being proud about them and making herself seen. So that's great to hear that also, other people in the community are doing that too.
Laura:
Definitely
Nick:
Laura, thank you so much. It's just before we let you go, do you have any top tips for anyone who's just starting out easy mobility, not quite sure about it, to help them sort of get to that level where you're talking about acceptance, and enabling and everything?
Laura:
Yeah, I think the important thing to remember is that there are options, there are always options. And if somebody gives you something to try or says you should use this, you don't have to use that, nor do you have to use it forever. But there might be some other options that do the same job that look different or feel different. So it's always worth exploring your options. And I do think seeing a health professional will give you a really good, broad outlook on those sorts of things. So quite often people don't know about splints that you can wear under your trousers or inside your shoes that no one else would ever know you're wearing, but can really help you lift up your foot if you've got foot drop, for example. And similarly, functional electrical stimulation, something that sounds a little bit daunting to some people because it also helps people lift their foot or somehow bend their hip by giving some electrical stimulus to a muscle.
And learning more about that, or even having a trial, which often you can just do in in a physio assessment might open your eyes to what it really does and what it feels like. So be open to suggestions and try and give things a go. And I also think I've got I've got one other analogy that I think people can remember. And, and I think you could think of some walking aids, like having an umbrella in your bag. So on a good day, that's nice and sunny, when you're feeling good, your MS is feeling stable and under control, you're probably pretty confident that you don't need your umbrella. But actually you might keep it in your in your bag anyway. But we know there's times when it's torrentially raining that that's going to be really useful. And it's not that hard to have it with you all the time. But there are times when it's going to be really, really useful. Maybe when you're really tired, or you've done lots over the weekend. And it's Monday morning, you still got plans you need to get to. And then there's times when it's drizzling, right. And it's you could go either way. But actually, you've got to weigh up the pros and the cons. And sometimes you might want to use the aid even when you don't really need it. But it just allows you to not be working quite so hard and using so much of your energy. So I think that's a nice way of thinking about something as you don't have to use it all the time. But I see loads of people who have a fold up stick, who do have it in their bag. And if they suddenly are really tired or they're walking gets worse, because maybe it's hot or because their job is delayed and they've been out longer than they intended to, then you've got that backup plan. So I think keeping an open mind is really important. And you might not need the same thing forever. Some people might have some rehab and they might then go on to something less supportive. Some people might need something more supportive in the future, but actually some people when they do get an aid feel quite relieved because it makes life easier. So being open to trying things I think is the most, most important thing here. And my job is to help people effectively achieve what they want to do. And sometimes doing that independently without any aids or help isn't the best thing for that person because it might be exhausting, might be painful it might be very limited. And actually using an aid can sometimes open up other options in what people can achieve. Because it does open up opportunities. And so trying to think of think of something is an opportunity. And as we said earlier, an enabler can be a really positive way of changing mindset.
Nick:
Amazing, thank you so much, Laura. I love that that analogy and the positivity and seeing those things as opportunities, those mobility aids as enablers and opportunities that allow you to enjoy life, enjoy the things that you want to and be empowered. So thank you. That's brilliant. Um, we've actually got a few things coming up with yourself, Laura, in terms of some more content that people might see from us at the MS trust. But where's the best place to find you and find neuro heroes online? And have you got anything that you'd like to sort of tell people about?
Laura:
Yes, so you can come to the neuro heroes website, neuroheroes.co.uk. And everything you need to know is on there, that tells you a little bit about us and about our classes. But you'll also be able to find that under the classes tab, and MS assessment form, so anyone that wants to come to our classes, if they fill out the assessment form first, we can then tell them which class is best suited to their needs. And we'll come back to you saying please come along to a free trial. So first class is always free. Just so you can have a look and sense of what we're all about and see whether it's for you. And, and we're also on social media. So Twitter and Instagram got few little videos on Instagram of exercises people might like to try and hints and tips, that kind of thing. So you can find this finds online.
Nick:
Amazing. Thank you so much. And I really appreciate talking to you today. So useful. And yeah, have a lovely day. Thank you so much.
Laura:
Thank you for having me. Thanks, Nick.
Helena:
And we're back. I thought both interviews was so interesting to listen to I mean, I feel like a person who doesn't need to use mobility aids myself yet. It's really hard to sort of, you know, know what the future holds. But I feel also can feel a little bit uncomfortable talking about what I think people should do, or should think you know, who needs to use them, because I can understand that it can be so stressful. We asked quite recently on our Facebook group, what were things that people were worried about, for the future with MS. And I would say like about 50% of people were talking about future mobility problems. So it's clearly something that's playing on a lot of people's mind. And so, you know, I feel like it's really important to talk about these things. And another thing that I really feel it's what Hayley was so right about is the importance of having more people being seen and being out and about using things like walking sticks and crutches and wheelchairs, whatever you need as ever really make other people who's thinking about using them and feel a bit uncomfortable with the idea of using them feel braver, because you it's more normalised you see it out and about, but also the more people are being seen using them, we will force sort of society to be a bit more responsible and make the world a little bit more accessible. So I think Hayley is so right, when she's saying about like, if we're not seen, we're not heard. So I think it's a really important kind of point to push, but also understand that it's quite hard when you're trying to get to grips with having to start maybe using a stick and you're worried that people are gonna start looking at you to have that responsibility on your shoulder as well. To be like that person who is, you know, are trailblazing and doing things so it's a lot to think about, but I feel like there has been some great comments from both guests.
Nick:
Yeah, definitely. And I think society has definitely come on a long way hasn't it in terms of things being accessible and there being awareness but I just feel like there's still a such a way to go isn't there? There's still for lots of people, still feel like people are staring at them or like they're, they're not included in so many spaces in so many different environments in our society and so I think you're right Helena. Yeah. It's really good to hear from Hayley where she was like, you know, accessorise, your mobility aids, you know, everyone should be paying attention to this. So that, you know, places do start taking notes, places do, start putting accessibility at the forefront, because you know, you only have to walk down the road to find, you know, a stretch of path that's completely inaccessible, because it's narrow. There's bins all over the road. You know, and it is tough, isn't it, that's going to be part of what people worry about is actually being able to get out and about and to do the things that they enjoy doing.
Helena:
And there's a lot of things that as able bodied people you don't really think about. I know, for instance, when I had had my child in a buggy and I was having to push the buggy around the amount of things like you said, bins or cars being parked up on the on the, all these things that you don't think about when you can physically walk around them, they might be a little bit of annoyance, but when you actually have to take a buggy or wheelchair out into the street, it becomes really dangerous. And it's all those things that that that we don't think about that people have to think about when they go out to plan their day. So it's yeah, it's so important.
Nick:
Yeah, definitely just having that independence, you know, feeling like you still can maintain that level of independence and still be able to, you know, pop to the shops, or go to work if you work and just being able to, to take control over the things that you want to you know, and that must be part of that psychological journey that people are on.
Helena:
Yeah, and I think it's so hard when a lot of things are already negative to start with, like, I think, I mean, like you said, things have changed now. But I remember when I was newly diagnosed, there was a lot of that phrase, oh, you might not end up in a wheelchair or you know, and it's just that phrase itself. It's so I mean, I asked Hayley, what does it what does it feel like when people are saying that because it's, it's so negative? And, you know, they will have the stats about Oh, so many people are in a wheelchair, and so many people never have to use a wheelchair. And I always felt like, that must be like, if you are in that percentage that have to use a wheelchair? Do you feel like you sort of failed, it's your fault, you know. So I think it's really, really important that we kind of reframe that language and the way that we use language around us, mobility aids, I love the use of sort of enabler in this case since there because it is an aid that helps you get out and about and get on with your life. It's not the wheelchair that's making you disabled, that's actually enabling you to do things. And it's easy for me, again, to say such a thing when I don't need to use one. But I feel like Hayley's positivity there of like, kind of refusing to stay at home and wanting to go out and do things, it was just very inspirational in that way. Because I feel like it's a hard journey for people to take. So hopefully, listening to this will sort of give you some ideas on what you can what you can do.
Nick:
Yeah, definitely. And Laura also was talking about, you know, seeing it as an opportunity, you know, seeing it as an opportunity, what can you now do now that you're using that mobility aid? And it's just that, yeah, it's, it's a real shift, isn't it in the perspective that probably needs to happen in the wider community as well, not just in the MS community and, and in communities of people who use mobility.
Helena:
And I think, you know, what me and Hayley discussed there a little bit about, if you're used to seeing them, like you, she was talking about her daughter and what she talks about, I mentioned, my granddad had a wheelchair, so we always sort of grew up with that in the family. And for me, it was just it was cool. He was on wheels, you know, we could go out and we could do things and he was always out and about doing things with me when I when, when I was little. So it was wheelchairs were sort of not a scary thing for me growing up. And I feel like, again, the more we see them, have them on TV, you have them in shows and that society is getting better. But like we've said several times now there is still a long way to go.
Nick:
Absolutely, absolutely. And yeah, as you said, Helena and we threw out to our group on Facebook as well. And we had a bit of a shout out. We asked them, didn't we, we said that you know what, you know who's using mobility aids? What would you say to people who are worried about using them? And we did have loads you know, lots of lots of really interesting comments from people say one person said, nobody's worrying or looking at you. You have more to lose by injuring yourself by not using mobility aids, you are the priority. I think that's so important, isn't it, you are the priority, go for it and embrace it, see it as a positive and in your best interests.
Helena:
And another person said, I felt the same. I was very self conscious with a stick but found people were very kind and had to remind myself that I never looked at people with sticks a wheelchair uses any differently before. So no one will be looking at you. It took me a while but the aides are there to help you, enablers is a good way to think of it and good luck. I also like this one. Think, again, kind of talking about enablers. So think of it as an enabler rather than a disability mobility aid. My relator Wheelie as I prefer to call it enables me to get out and about without it, I would stay at home. I use the bus and I could not stand and wait for one without it.
Nick:
And this one was actually from one of our volunteer moderators, Caroline, thank you, Caroline, for everything that you do in the group. Honestly, you are amazing. Caroline said, the thought of using one is scary. But for me, it's a game changer. People are more patient of my slow walking and wobbling, I get more space in crowded streets. And I also get seats on public transport. So go for it. My worries were just in my head. And none have been true yet. And finally, we had one more as well that we thought was great, this person said think of your walking aid, enabling you to do the things that you like to do safely. Therefore keeping your independence. My own background was teaching therapy. You need to look at how you can adapt to enable yourself to carry on. I decorated my stick with my granddaughter. Accessorising the stick there. And we, as Hayley was saying, and we had so much fun painting it. I have an outdoor Walker with seats, and sometimes she sits on it while I'm pushing. We have joy together during those times. Without my walking aids, I would not be able to do the things I enjoy. Boy, would I be miserable without it. So go for it.
Helena:
I think we'll link to all of that stuff to the group. And that conversation actually, because I think there was last time I checked, there was over 60 comments on this. And they're all really interesting and very much on the same level as these ones that we've read. But if you want to learn more about walking aids, I mentioned at the start that we have another podcast episode about the topic. And in part two as it was sort of mobility one and two. And we spoke to a physiotherapist Jody Barber, and she went through a lot of things like how to best use a mobility aid, how you go about getting them and other important things to think about. So be sure to check that one out. As I said a few times the links are in the description of the show notes.
Nick:
Yeah. And if you do want to ask any questions about MS. Of course, we're always around, we're here for you. Our helpline is available from Mondays to Fridays, apart from UK bank holidays. So that's from 9am to 5pm. Outside of these hours, you can of course drop us a message or leave us an answerphone message. And we'll get back to you as soon as we can. The number for the helpline is 08000323839. Or if you didn't want to go for the phone option. Of course you can drop us an email as well with questions about MS. So that's ask@MS.trust.org.uk.
Helena:
And you can come and find us on social media. We are on Facebook, we've mentioned that we also have a Facebook group. But we also have a Facebook page that you should give a follow. And we're on YouTube, Twitter, Instagram and Tiktok. And you can find this podcast on Spotify, Google and Apple podcasts and Amazon music and also on YouTube. If you're on YouTube, please like and subscribe like they like to say and drop us a comment maybe have you got some tips about how to get your head around using mobility aids, please let us know in the comments.
And I want to say again, a big thank you to both Hayley and Laura for being such great guests. And, you know let us know what you thought of this episode. And as we always finish with a big thank you to Ann Chapman audio for the music of this podcast and we'll see you in a few weeks time. Bye
