Living With SMA

Ep 31 Summer Holidays with SMA

August 26, 2023 Spinal Muscular Atrophy UK (SMA UK) Episode 32
Living With SMA
Ep 31 Summer Holidays with SMA
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Hi everyone, and a big welcome to the Living with SMA podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity, SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast. And please do connect with our charity and share your comments online and let us know what you think from all the team at SMA UK. Thank you for listening. Hello everyone, and welcome back to a brand new episode of the Living with SMA podcast. My name is Ross Lannon, and I'm gonna be your host for today. And we have another great episode lined up for you today. All I will say is grab your bikinis, grab your speedos, because we are going on a bit of a summer holiday, which is very exciting. I wish I was talking literally, I should put my... I've got my sunglasses here, in fact. Maybe you should play my bit. But yes, we are gonna be talking summer holidays today which is gonna be a good one. We're gonna be talking about disability related travel. Between us we are gonna be sharing some of our experiences over the years and some little tips along the way for traveling, whether that's within the UK or whether that's abroad as well. So let's kick things off with some introductions today. Let's meet who's gonna be sharing their stories. Let's start with you Maxwell, please. Yeah. Hi, I'm Max McKnight. I am 19 years old and I'm a business management student. I also do some volunteering for SMA UK in Corridor Trust. Brilliant. And Ross, number two Hi there. Yeah, so, I'm Ross Hovey. I have spinal vascular atrophy, Type 2. I've just turned 44, so yeah, feeling a little bit older than young Maxwell, that cheers me. I have a full time career. I work for a large financial organization and just due to sensitivity, don't talk too widely about that on sort of podcasts and webcasts unless I'm specifically talking about my career, but if you wanna look me up on LinkedIn or any other form of platform, I'm sure you'll quickly find out what I do and we can connect there. Yeah. So I travel all around the world as a disabled person. Really enjoy traveling with my family and my team of carers. And I've been lucky enough to visit many pieces around the world from America, Dubai, Singapore and lots of places in Europe. Fantastic. And over to you, Ally. Yeah. I'm Ally. I've just started doing a little bit of work for SMA with the outreach team. I've also got Bobby, who's 13 this year. He's got SMA Type 3 and Freddy, who's eight. We haven't been abroad much, only with a manual chair. We mainly do camping in the UK, so interested to hear what everyone's got to say about going abroad. Yeah, great. I think this is the nice thing about today's podcast is the fact that we've got a nice variety of us here. We've all got different levels of experience when it comes to traveling with disability. So it's kind of, we've got the... Some of us have traveled more than others and it's a great way to sort of share tips and our experiences. So I wanna start things off on a positive note.'Cause I think we all know traveling with a disability comes with a lot of anxieties and things, so we will get onto all of the nitty gritty stuff as well. But let's kick things off, talking a little bit about our experiences that we've had. I wanna know where's the best place you've been? What's your favorite holiday memory as such? Maxwell. Oh, I have to say it's got a really bad name, but I think the best place I've been to is Benidorm. Because I think it's really touristy and there's quite a lot of infrastructure in the area. And so when I went onto the beach, I had my own lifeguard and wheelchair. Kind of beach wheelchair, which went into the water, which was really cool. And that was like my first time that I fully went into the sea independently. And that was a really great experience and I think it was like one of the smoothest holidays we've ever been on, which is really nice. Personal lifeguard. Wow. Okay. Yeah. Benidorm. Setting the tone there. I like that. Yeah. Yeah. And Ross, what about yourself? Yeah, I think accessibility means different things to different people. So for me personally, Dubai is probably one of my favorite places, keep going back, telling me that it really worked for me. But I recognize and not necessarily. Yeah, no, it does sound nice. Never been myself, but it does sound good. Ally, how about you? Where has been your favourite place that you've been over the years, whether that's in the UK or abroad? Well, we haven't been to many places. Obviously Disney is up there with the best lovely places for the boys, but I think personally I love camping, so we always try to head off to the forest, forest of D with all the lovely streams going through. Bobby is still quite slight, so we can still move him around quite a lot. And up until recently, he was still crawling quite a bit as well. So to go to the camping, easy for him to get around the tent and being out in the fields in his power chair just freely exploring is just amazing. And then when we find little hidden streams that he can go and splash around with his brother or make dams, at the moment, that's a perfect holiday, but he is getting bigger. So trying to explore a little bit more of going abroad will be our next adventure. Yeah, I think sometimes some of the smaller sort of staycations and things within the UK as well can be just as rewarding as a little family break as well. So that's really nice. I think my personal favourite holiday trip over the years was probably Cyprus. I would say, that was around my 21st birthday, quite a few years ago now. And yeah, that was probably one of my favourite holidays. 'Cause I think, I don't even think we left the hotel for the whole week. There was just so much going on within the hotel and I just loved it. It was the perfect balance of relaxing holiday, but also great entertainment and food and drink and all that good stuff. Yeah. Cool. Well thank you guys for sharing your favourite trips there. I want to talk now a little bit about travel essentials. So what are some of your main essentials when you go travelling, you're writing your list, you're packing your bags ready to go. What are the main things that you want to take with you? For example, I'll give you an example. We're not talking the standard, remember your pants and socks. We are talking equipment wise or anything that makes your trip a bit better. Like for me, it sounds really boring, but I have a little mini first aid kit that I take everywhere with me. 'Cause I'm so paranoid that you can guarantee as soon as I get somewhere, I want that little cream or I want that little bandage or whatever. So for me, that's a real travel essential. Does anything come to mind for you, Maxwell? Probably a manual sling. One of the ones with handles that people can lift you up in. I think that's the main thing. When I used to go on holiday, we didn't have one. And obviously, you know people picking you up from under your arms and they don't know where to hold you from, but if you have one of these manual slings, you're a lot more supported. Especially with my head after my spinal operation, it's come in handy. Handy loads, but that's the only real bit of equipment other than my hoist I bring on holiday and of course my wheelchair, but yeah. Yeah. And Ross, what's your go to essential? Lean back through was covered though, get base for that or you need the hoist and the guy will move the player fellow SMA up, but for me, I've got a horrible collapsible shower chair that sort of folds up into hand luggage. It's really easy to transport and that to me is something I couldn't be without. And even that, I'd probably only give it an 8 out of 10, it's still not as good as the shower chair at home, but it does. Yeah, definitely. I think as a wheelchair user, whenever I go somewhere as well, I always take a manual chair with me. 'Cause I think I'm just so paranoid of if anything wrong goes with my electric, at least I have some form of backup. As uncomfortable as it may be and as inconvenient it may be for my family to have to push me. At least I know I'm not gonna be stranded. We do that as well. We bring a manual chair. But normally my sister hijacks it, but yeah. That's what siblings are for. Yeah. Exactly. Exactly. It is when you rock up to the airport, isn't it? With everyone else can just casually get on the plane with one or two bags and here we are with whole this equipment and stuff. Yeah. Looks like I'm going away for a year. Yeah, it initially does. Ally, you already mentioned obviously, you are planning to take two electric wheelchairs. Yeah. How are you feeling about that? Have you done much research into it so far? Yeah, this is probably my biggest bit of anxiety over going. So Bobby has been picked to play for Geneva Allstars team for power chair football, which is why we're going over, which is why means obviously, he's power data and also his football sports wheelchairs. So thinking of taking those on the plane, I'm like, oh my gosh. So, finding out about the batteries, certain batteries can't be in the chair when he's on the plane, taking bits off the chair so that if anything happens, it's safe. That's my biggest fear. Is his data, something happening to it on the plane and we get over there and we're stuck kind of thing. So yeah, lots of backwards and forwards. We've got a good support team around us. Constant chats with Geneva going through everything, what we need in the hotel, shower chairs. Really be impressed about the portable profiling bed. That sounds amazing. Good. Bit of a worry. I don't think I could literally take his manual chair as well, because yeah, travelling light doesn't happen. Even just for like a weekend away, travelling light isn't the thing. No. Even when I go on a local trip, I take my own portable profiling bed 'cause I can't sort of make do on a regular bed. So my friends are just like, here I am carrying a home bed and a mattress. It's ridiculous, but it's what we have to do. Unfortunately, I've never tried taking that on a plane. I very much doubt that would be allowed. But yeah, equipment is a huge part of when it comes to holidays, isn't it? I think between us we can all agree that it's that worry, it's that anxiety of not having our home comforts. Maxwell, what goes through your head when you are looking to book a holiday or something? Do you worry about all the equipment you have to take? I think the main ride for me is the portable hoist. Because of its weight, they always freak out about it at the airport. And especially with some airlines they've said they just won't take it. And I've been to airports before, and we've had like an hour discussion on if it can actually go on board because I think it's a moving and handling thing, with them lifting it up or something. And so last time we went, we actually just took it all the way to the scissor lift and that kind of eliminated all the problems, but obviously, they didn't say that at the start and we had a big conversation about it that probably could have been way smaller. Yeah. Yeah. That's the thing, isn't it? I think we all have this fear of damage to our equipment and things. And I know there's been some progress recently in regards to the consequences of damage and now hopefully, things will get better in the future. But yeah, there is no quick fix or there's no real advice that we can give at the moment 'cause unfortunately it's out of our hands, isn't it, Ross? It is. You're relying on other people. The planes haven't been designed to even load a wheelchair in, so they're making do with what they put a suitcase on, and they're under time pressures to do it. So whilst damage happens, I think some of it does probably happen through... I dunno if anyone actually intentionally damages someone's wheelchair. I think a lot of it is through carelessness and through the pressures, but just going back to Maxwell's point, the bit around the hoist is a real... It is a real one. I've experienced that as well where you've stood there for an hour. The irony is that your wheelchair weighs more than the hoist and they manage to get that on the plane and don't argue about it. So it's kind of you thinking, "Well, why don't you just take the hoist in the same place as you're gonna take the wheelchair 'cause then you're not gonna have a problem. I think, kind of maybe go back to your other question around what the biggest fear for me is the moving and actual impact of transferring to sort of the aisle chair and then the aisle chair to your seat. And it's so, kind of our way, standards, sort of about, it's under 11 stones so I'm not huge, but I'm not tiny either. And it's the awkward there's not a lot of space to lift you. Our legs flimsy if they get caught in someone else's legs. It's just really worrying and that someone's gonna injure and drop you. I think once I'm kind of in the plane seat, you can calm down for a little bit, but then you've got the angst of not being able to go to the bathroom over longer flight. So I think there's so many things that kind of are just an inconvenience about trying to see the world. Yeah. Completely agree. Yeah. And I think so many of us are in that same boat. That it's so frustrating that we're still living in a world where we can't just fix these issues, but yeah. I know we're making small progress, but still it's not enough, is it? It's really not. I saw there's a fantastic content creator online called FashionBelle, and she put up a brilliant post recently. I saw it was regarding travelling with a wheelchair, where she sort of basically covered her whole chair in signage that was saying, "Please be careful" literally. We shouldn't have to do this, but it was literally begging the handling staff,"Please be careful, this chair is literally my legs. It's my freedom." But there was some great tips on sort of some lifting handles that she'd attached to the chair as well. I thought that was a really fantastic bit of advice from her there. Ally, is there anything in regards to equipment or anything, and I know we mentioned the chairs already and you said that you like the sound of Ross's portable shower chair. Is there anything else that sort of really puts you off traveling? Because one bit of advice that I wanted to mention to anyone who maybe hasn't traveled abroad as much, is that depending on where you go there are certain places that where you can hire equipment that are already there. Which has been a big help for me. I know in my last holiday when I went to Corfu, I thought I could survive without the bed, I thought I could rough it for a week by just propping up the bed that's in the room and stuff. I did a couple of nights and I just couldn't, but luckily, within the area we managed to research and find a local hire company where we could hire a portable profiling bed, which again, it's not one of those things that I'd even thought about before, but until someone says about it, now it's like, "Oh, that's a really good idea actually." Is that something you've looked into when traveling at all? Yeah. So, as I said, the hosts in Geneva have been really good and I think other than that, obviously the chairs getting there. The other thing is around toileting. You know, Bobby is nearly 13, so he's coming into certain years. And it's really private, going to the toilet anyway and for him. So we need to make sure that that's okay. He doesn't really want us holding him on the toilet. He's only, he's at very, very slight, he's very, very thin. So making sure that the toilet seat is suitable for him. So it's been backwards and forwards with emails saying, can you get this piece of equipment that will go over? Well, what's the seat like on it? If it's too big, he'll just fall through it and he needs to feel safe while he is on the toilet. So that's quite a big thing. Making sure that's okay. We did a PGL trip two weeks ago with his school and I needed to go'cause they didn't have hoists and things. They had accessible activities but not hoists. And again, I had to take his shower chair with us 'cause it goes over the toilet as well. So it was played around with that because the toilets were higher so I needed to make his shower chair higher to go over the toilet. So it is thinking about that personal area and how to make him comfortable. And to know that there's places that you can hire things would be good really. Yeah. Can I just say that I'm... Yeah, definitely. Actually hiring equipment this year for my holiday when I go abroad to try and eliminate like taking the hoist and obviously I used to just use the hoist to go to the loo, but I need a shower chair now. So we are doing that as well. So basically hiring out all the equipment. So the only struggle is really the wheelchair. Which will probably just put some padding on the wheels maybe. 'cause even though it's really good to like bubble wrap the whole wheelchair, like it's really stressful to do that in an airport environment and especially when I need to drive it there as well. So we'll probably maybe bubble up the controller or take it off, but apart from that yeah. Yeah, yeah, you do feel like you have to almost take control, don't you? And really protect your own things, which a lot of other people don't have to worry about these things, do they when they travel. But it takes a lot of the spontaneity away from us being able to just get up and catch a flight like most other people. Do you think, Ross, and I'm sorry to put this question on you. I know you said you had a big birthday recently, but do you think that our age plays a part in what we worry about? 'cause I know when I was a kid I didn't care about any of this and whereas now I'm a little bit more like, I over plan everything. 100%. So with with age, you are more, you see danger and you see hazards more commonly. And I think probably the one that really resonates was, I think, oh, it must have been about early in 2011, I went to Dubai with two of my friends and some carers and we went to Atlantis Water park for the day and I went on the, what they're called it? You get in a double rubber ring or something. Well, the rapids I guess it's called, or the log, the flue wherever the water slide, the water park. And it was great, it was fantastic experience, but now I just would fear that my leg like is not as sturdy as it was. And it would probably, I don't know how I didn't break my leg that day. So now if someone said to me, would you wanna do that? I'd be like, no, I'll sit by the pool and watch you guys have fun. So I think, you definitely fear these things more as you get older and your body doesn't heal as quickly. Right? So when you've got SMA and our bodies are already weak, the older you get and the combination of that, you don't really want to be you don't wanna get broken bones at any time, but you definitely don't wanna be getting them in your 40s. No, definitely not So what is your favorite thing about going away, whether it's whether it's abroad or whether it's in the UK. Ally, what is it that you look forward to the most about having a bit of time away? For me it, it's all about family. It's our time together, the four of us, our little unit and getting the boys to experience, everything that they can. We always try, we've always been the same with Bobby, that he can do anything. We just have to think outside the box and look at it a bit differently. Try not to have too many obstacles or hazards that we can't come over. So it's just really important that it's as stress free as possible so that we can all enjoy it. Because holidays are precious, we're all working so much and boys are at school, there's so much stress already. So to have that time, just us, where you enjoy your time together, don't need any other obstacles. And the thing is you don't travel light. So if you can get things that you can hire when you get there just to make it easy that's the most important. Just being together. Yeah. And Maxwell you mentioned a little bit earlier on about the beaches. Yeah. In Benidorm. Is the beach, is that something important to you?'cause I feel like we are seeing a lot more accessibility on beaches across the world at the moment, which is great news. Yeah, no, definitely. I love the beach and I think abroad they definitely do it better, I think. I can't already get on any UK beaches. They're completely inaccessible. So yeah, just out exploring. I love just exploring the world, the cultures, the food is a big one for me. Eating other food. And yeah, just enjoying my time and relaxing and not having to worry about anything else. But I'm gonna try and get in the sea this year. But obviously going back to thinking about safety and the other question, Do I wanna go out in the sea and possibly risk damaging something in the waves? So if it's not too wavy out there I might get in the sea. Yeah I agree with you there. I'm one of these, I love the sea and I love the water but I'm like yeah, from a distance. I'm happy just to look at it. But I don't wanna be paddling. Although in Cornwall, if we are talking UK there are a lot of beach buggy type wheelchairs now which which are great. We're seeing a lot more of them popping up around the country which is which is always great. But I'm with you on the food there as well. Like I love especially if you're going all out like an all inclusive where you can just have the most random dinner and lunches that I always remember once I had like a... I think I had a burger for lunch with a side of jelly on the same plate and it's like where else can you do that? Three courses for every meal. Yeah exactly. Ross what's your favorite thing about going on holiday? Probably being off work. My favorite, I think one of naturally a break from work so it's nice to not have to be up at seven o'clock and and being on back to back teams calls all day and that. But I think the biggest thing for me is it's that not having to manage your life and by that I mean there's no shopping to do, there's no like thinking about what needs to be done around the house, there's no carer handovers because typically when you go away, you have one carer or two carers for that duration of that trip. So for me, away for 12 days I haven't gotta worry about someone coming in, someone calling saying obviously there's the fear of the carer that's with. You could get ill while you're on holiday but that hasn't happened. But I think for me it's that just switch off from anything to do with thinking about rotors and hours and any of that stuff. It just goes out the window because it's really easy. You like you leave they start work when you leave and they finish when you get home. So that for me means it's a complete de stressor. Yeah, yeah definitely. And I feel like there's two types of people when you go on holiday. I don't if you agree with me here Ally. I think when you plan a trip you've got the people who actually want to go out and explore the area and have an itinerary and and go out and explore. And then you've got the ones that just wanna chill and do nothing. Where do you fit into that? Yeah definitely. The chill. Definitely the chill. It's nice to go out and do some bits explore and and check a bit of the culture and stuff. But it is very much just a switch off, just complete chill. Let the boys do what they wanna do, get up when they wanna get up, eat when you wanna eat and yeah. Just calm and chill and enjoy it and late nights, no school the next day. All about the good vibes. I like it. This question is probably... My next question probably more for the sort of experienced travelers, Ross or Maxwell. What has your experience been with travel insurance? Because I know travel insurance can really vary. It could be anything between 50 pounds to thousands of pounds and a lot of companies just don't even wanna come near you if you've got any form of disability or condition. Have either of you had any sort of good or bad experiences with travel insurance? I'll be first. So I've never been declined travel insurance. I think over the years different companies have stopped doing certain, offering certain insurances to people with spinal mass respiratory. And I think the biggest thing is if you've got SMA and you've had any respiratory problems that really is where they start asking a million and one question. Premiums go high and touch wood. I've not had that. So it's not a promotion. I'm not doing a paid advert. I've always found that a company called All Clear, are reasonably good, you can list all of your disabilities not just your SMA. If you've got like for example well sort of like a high blood pressure for example. I can add that on. And I think I think my annual policy is about 350 to 400 pounds which is still a lot of money. It's like holiday tax isn't it? Like you kind of... You can add insurance like it's more hazards. So some people don't bother. Some people do. Like touch wood, I've never had to claim off it but the one time that you don't take it'll be the time that you really need it. And the cheeky little tip if you get top cash back, you sign up for top cash back, All Clear, off for about 20%. So you end up getting about a hundred and something pounds back top cashback. Oh we love a cheeky little tip there. Love that. Maxwell's smiling and nodding on as well. He sent me the link before. I see. And what about you Maxwell? 'cause I know me personally as I sort of get older, I've kind of left all that stuff to my parents and I never deal with it. And until now I'm getting older. I'm just like, oh I've actually gotta look into this myself now which kind of sucks. Is that something that you've started to look into? Actually this year was the first time I booked like the family holiday early enough and yeah no I went round like loads of different companies and I did think it was gonna be completely stupid the price but it was actually okay. But yeah no, I think Ross has a lot more experience on where to go and where to look. But yeah... No mine was, mine was okay. I think it was about 200 pounds I paid. Yeah. Okay. Cool. Something that I think again is worth just noting a little bit of advice and little tips for people, once you do make it to your holiday destination wherever you are traveling. I found out recently that apparently the Blue Badge scheme is recognized in certain places in Europe. So if you are gonna be driving when you are over there which was news to me I never knew that. So there's something we like a little bit of a positive news, certain places can do that. So yeah that's that's good. I like that. I wanna talk a little bit about advice for people. I feel like we need to give some people advice for those who maybe haven't traveled as much. What advice can we give people, Ally from a sort of, I know you are looking to take a lot of advice yourself at this current stage, but you've done some local travel as well especially when you've got lots of equipment. What advice would you give to somebody when it comes to planning a trip? I'm all about a list. I love a list, so making sure that you've got everything that you need to take. Obviously if you've booked your holiday, you know your location, what's around there and just making sure you've got everything extra, extension leads for charging and everything like that. Your first aid kit, I'm a mom, that's it. You've got to have the first aid kit to go with you. Just to make it easy. And little bags of things as well, so everything again in a draw string bag for the toilet, so it's just easy to take with us. And it's discreet so you don't, it's fine if you're on the beach, you can take it with you up to the toilets and stuff. So yeah, just preparing, always preparing beforehand, making sure you've ticked all your boxes. Yeah, I like that. I think probably that is probably the best advice that we could give anyone is just prepare. Unfortunately, when you have a disability and you're looking to travel, there's not a lot of spontaneity. We do have to thoroughly plan, research, prepare everything, but it will just work out in your favor in the end, because none of us wanna get to the other end and be surprised or let down by anything. So that research is key. Maxwell, is there any extra advice you can offer to people? Definitely just being prepared like what's been said, but also I think when you are booking on like the hoist and your wheelchair, definitely get them to put like a note on the system saying like, this is all approved, this is all good. And also get them just to email like what's been said as well. So you can take that to the airport and just prove that everything's been approved and everything should go smoothly, hopefully. And like in terms of wheelchair, printing off the manual, sticking it to your chair. And just I think Palmer built also do a document where it shows you what the battery type is as well, which you can print of and stick your wheelchair as well. Which kind of stops any questions from really being asked. Yeah. Yeah, I'm definitely the kind of guy that prints everything. I've got my little plastic wallet full of, you see those funny sort of videos online where you've got the airport mums that literally have everything or one person is in charge of everyone's passport, just so nothing gets lost. As much as we make fun of it, I do think it is good to allocate people individual jobs. And so they're responsible. Anything else you want to add Ross as well, in terms of travel advice? Yeah, so probably break it down into a couple of seconds. So in the booking part, when I'm booking an accessible room, I ask for photos of the room, confirmation, measurements of things like the toilet, so that there be no discrepancies. So if I get there and that isn't what they've given me, I can say, well, that's what we agreed. So either you get it or you're sending me on the next flight home at your expense. 'Cause that would be my approach. I think the other one is if you know the manufacturer of your wheelchair, you have a good relationship with a wheelchair service provider, is to find out from them, tell them where you're going. And so I went to Spain two weeks ago and the chap who services my wheelchair, I said just in the unlikely event of there's a problem when I get to Spain with my wheelchair, do you have a good contact number or company that I could contact? And his exact words were, I do have some, if you're in a problem, just message me as soon as you land and I'll put you in touch with the Madrid office. So kind of that reassurance. Or if you don't have a good relationship with your service provider, just Google like the make of your wheelchair and service providers in the destination where you're going and maybe get their website or their number or email address, something like that. And then my third one is, and it's probably, it is related disability, but it's just a more generic advice, kind of we all put like our hand luggage in our hand luggage and our clothes in our suitcase and our suitcases go missing. And whilst it would be disappointing for me to have no pants and alarming for everyone else to see me naked. I think the more important thing is I put a sling and my sliding sheet in my hand luggage and like a pair of joggers and a t shirt so that if the worst comes, the worst case scenario when a case doesn't arrive and I have to hire a hoist, I've got my hoist sling with me, I've got my slide sheet for the bed and I've got a change of clothes. That's just a real thing that I'm gonna, again, just eliminates any potential delay should your bag go missing. Yeah, I like that. I love how Ally's got a pen in her hand. It's almost like she's making notes. Brilliant. It is great advice though. And yeah, talking about putting things in your hand luggage with wheelchairs, I do exactly the same. My wheelchair controller detaches so I actually take the wheelchair controller off and carry my controller in hand luggage separately, because obviously if that gets bashed, it's very fragile. Whereas if the general chair gets a little bit knocked, the chances are that will survive. Whereas that electrical, you can take that in your hand language as well, which I think is important. One bit of advice I also wanted to share with our listeners today is that if you are a little bit anxious about flying whether that's about the airport experience or the airline itself, reach out to your local airport in advance because a lot of people don't know this, but a lot of airports do have a specific access team or access forum. I'm on the access forum for my local airport and I've been working with them for a couple of years about just generally improving the airport experience for people who require special assistance. And since doing a little bit of work with them, it's actually really refreshing to know that they do want our advice on how they can improve things. And it not only eases the anxiety for yourself knowing that since I've been involved with this airport, they've got a better aisle chair. It's a lot more sturdier. 'Cause I raise concerns about how tiny those aisle chairs are and how unstable and little fixes, like getting a sturdier aisle chair that has headrest support. They wouldn't have thought of that before and they've now got an AMBU lift, which just makes the boarding process of lifting the chair up onto the plane so much easier. So if there's an opportunity for you to get involved with your local airport, join their access forum, give them improvements and advice, and I think you'll be surprised at how willing they might be to actually help you. 'Cause they do have to meet certain regulations now. So yeah, it's definitely worth it. We are coming to the end of today's podcast, so I just wanna sort of end again on a little high. We started the podcast by sharing where our favorite holiday has been in the past. Let's end by sharing, where is your next dream destination? Like what is top of your bucket list for travel? Maxwell, where do you want to go? I think my dream destination is Japan and it's just because of the food. Yeah. Japan. I like that. Nice. Okay. And Ross, how about you? So when I retire which I don't know when that'll be, but what I think I'd like to do is hire an accessible RV and maybe do a bit of a tour around America. But when I say an accessible RV, so a recreational vehicle is what American's call it. It's like a coach, like that's like not a caravan.'Cause camping is, sorry, it's just not for me. So it happens be like TV, hot water, on tap, kit, those kind of things. So I'd like to hire one of them for maybe like eight to 10 weeks, sort of maybe travel, see different parts of America. Oh, RV. That sounds great. Love that. And Ally, is Disney 2.0 on the cards or are you gonna branch out a little bit more? Yeah, I think they get a little bit big for Disney now, even though I'd love to go back. I'd love to take to Orlando. But I think Australia, I'd love to take them to Australia. It's just so beautiful. They've actually got the Power Chair World Cup there this year. If I had the money, we'd be booking those flights. But yeah, it would be amazing to go to Australia. Oh yeah, that does sound good. Shame about the long flight, but it would be amazing, wouldn't it? The only downside, isn't it? The long flight. Yeah, I think for me, just anywhere with a bit of sun I'm such a sun wash. I don't care where I go as long as I get a bit of heat. I've always fancied going on a cruise as well. I think I did like a very small weekend cruise when I was a kid and I don't remember a lot of it. And I had a friend who went on a cruise ship recently and said it was very, very good access. So I feel like that's gonna be my mission to try and check out a cruise somewhere over the next few years. So yeah. There we go guys. Well I hope you've enjoyed our little summer holidays episode today. As always, if you've got any thoughts, questions or opinions, please do get involved. We'll leave the email address at the bottom of this video where you can get involved with SMA UK and share any thoughts and comments. Hopefully you've enjoyed listening to our stories sharing a few tips as well. And hopefully you can either relate to some of our stories or you might have even taken some positive away from it as well. Thank you so much for listening, as always. Thank you guys for sharing your stories and we'll see you again very soon. Goodbye. You've been listening to The Living with SMA podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website@smauk.org.uk.

Host introduction
Guest introductions Maxwell
Guest introductions Ross
Guest introductions Ally
Favourite holiday moment
Accessibilty means different things to different people
Personally we love camping
Travel essentials
Folding shower chair
Portable profiling bed
Fear of damage to our equipment
Plane hasn't been designed to take our Wheelchairs
Is there anything that puts you off travelling
Hiring equipment to eliminate taking so much
Do you think age plays apart in what we think
What is your favourite thing about going away
Exploring the food
Being off work
What has your experience been with travel insurance
What advise could we give people for going on holiday
Research is key
Be prepared as you don't want no pants
Reach out to your local airport
Dream destination
RV tour around America
Powerchair world cup
Any questions
Outro