Ep 36: Resonate 2023 Lookback

Step into the great outdoors with us in this special episode of our podcast, "Resonate." Join Molly, Ben, Ellie, Sophie, and Alicia as they share their incredible experiences from a weekend event designed to resonate with adults living with SMA (Spinal Muscular Atrophy).

In this conversation, our guests take you on a journey through the beautiful landscapes, shared adventures, and profound connections they discovered at this fully accessible outdoor event. 

But it's not just about the event itself; our guests also delve into why they can't contain their excitement for the next one. From forging lifelong friendships to embracing the spirit of adventure, you'll discover the profound impact of these gatherings on their lives.

"Resonate" is a testament to the strength, camaraderie, and unbreakable spirit of individuals living with SMA. It's a reminder that the outdoors is a canvas where dreams are painted, and where life's most meaningful moments come to life.

Tune in to this episode and let the stories of Molly, Ben, Ellie, Sophie, and Alicia resonate with your own sense of adventure and wonder. 🌿🌄✨

#Resonate #OutdoorAdventures #SMACommunity

THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ 
You can contact SMA UK on the following social media platforms ⬇️⬇️ 
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#Resonate #OutdoorAdventures #SMACommunity
 
If you would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
 
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Transcript

0:04

Hi everyone and a big welcome to the Living With SMA Podcast. We talk about all things spinal muscular atrophy related, the 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 channel 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. Now, in today's episode, we are gonna be taking a little bit of a look back at the SMA UK Resonate Weekend 2023. Now, this is a weekend where a whole group of people from within the SMA UK community come together for a weekend full of fun food friendships and just some great activities. So we've got the gang together today to have a little look back on this weekend, which sounds like it was a whole load of fun. I'm very jealous that I missed out on it. But yeah, let's kick off with some introductions before we get into all the juicy gossip, because that's what I'm here for today. I'll kick things off. My name is Ross Lannon. I am your host for today. I am 30 years old from Cornwall. I have SMA Type 3 and I'm excited to meet you guys. So let's kick off with Sophie. I'm Sophie, I'm 18. I have SMA Type 2. What else do you want to know? I'm studying social work at uni. Amazing. Brilliant stuff. And Ellie? Hi, I'm Ellie. I'm 20 years old. I have SMA Type 2 and I'm studying multimedia journalism at uni. Awesome. And Molly? Hi, I'm Molly. I've got SMA Type 3. I'm 20 and I'm studying law with criminology at university. Awesome. Alisha? So I'm Alisha. I've got SMA Type 3 and I'm studying computer science at university. So last but not least, Ben. Hello. Yeah, I'm Ben. I'm 22 and I've just started a job as a journalist. Nice. So you all need to watch what you're saying today 'cause Ben's gonna start writing stories about you. Okay. Oh... Maybe, maybe we'll see. So we are all here today 'cause we are gonna be having a little throwback, a little look at your recent trip the Resonate Weekend, 2023. Now, for those that don't know, this is a weekend that was organized by SMA UK. It took place at the Calvert Trust in Exmoor, which is sort of North Devon. And the Calvert Trust is sort of an accessible residential activity center where it's sort of specifically designed for people with access needs. So yeah, let's just jump straight in guys. I wanna know sort of, we're gonna get into the nitty gritty of talking about all the specific activities and things as well. But as a whole, Molly, kick us off with what was your experience like? I had a great time. I thought it was really good. A lot of things that I hadn't tried before. And a lot of activities I didn't think I would enjoy, but actually were really good fun. We did like the crate stacking and like the pouring rain, which I was like, okay, it's gonna be a bit of a nightmare. But it was actually not crate stacking, sorry, the abseiling in like torrential rain. Really good fun. It was nice to meet everyone else. And obviously we've all like become friends since we only met on the weekend. Yeah, I had a really good time. I thought it was really good fun and great. Completely do it again. Love it. Alisha, was this the first time that you guys have all met in person then? Is it? Yeah, it was and it was amazing, 'cause I feel like as soon as we all started speaking, we just clicked instantly and it was great. So this is the group to watch out for. Was you guys just like stuck to each other all weekend, was it? Or, we were... We did mix, we talked to other people, but it was a cute little group, we did. We were quite happy 'cause we were like assigned groups in the beginning and none of us were in the same group, but we'd like become friends the night before and then the weather was so bad. We like got to choose our own groups in the end, which meant we got to like spend the weekend together, which was nice. I love it. So Ellie, talk me through, for anyone who's not familiar with how these resonate weekends work, sort of how does it work? Sort talk me through from, do you arrive, is it like a Friday night and then you just kind of mix in? Yeah. And so we arrived on Friday night. I personally drove six hours to get there down to Devon. And then that Friday night, we just went, meeting new people. And then on Saturday that's when the activities started. But as Molly said 'cause of the weather it was a bit disrupted so most of the activities had to be cancelled on Saturday and it was torrential rain. So we had to choose other activities which was nice.. I see. And Ben, what was your sort of first impression when you rocked up? Was this your first time at the Calvert Trust before? Nice. So I ran when I was like 20. I first came when I was like 8 years old. And no it was just nice to be back 'cause it felt like 15 again. It's great. But you don't really get to do things like that very often, so it's nice to feel like you could almost like be free on what you wanted to do. That doesn't happen very often, but it sounds ridiculous and cheesy. No, it's true, I suppose. It is a really good point because I think a lot of us with physical disabilities almost, we sort of miss out on that fun adventure side of things quite often because we're limited by our environments that these activities, these weird, wonderful activities are not often accessible. So I guess when you are presented with an opportunity to do these activities where actually yes, there are hoists and there are various things in place to help you get involved, I guess go a bit wild. Sophie, tell me a little bit about the social aspect of this. 'cause we are gonna get onto the activity specifically next, but I want to know more about the social side and the opportunity of the SMA community coming together. What your thoughts on that? I thought it was a really great opportunity to like meet new people because I guess SMA UK they do like the little picnic in the parks and things like that. Which is mainly aimed at younger people I think. So before the weekend, Ellie was the only person that I actually knew. And then it was really nice to just meet other people who like know what you're going through and things like that, made new friends and stayed in touch and we're going to Birmingham next weekend. Are you? All of you guys going together, are you? I think we need to decide what day we're actually gonna do it. I think because people are with like uni schedule, so we need to find time when all five of us are free. I love that. That's cool. And as well as making like these new friendships then did you find yourself, Alisha sort of sharing kind of advice and lifestyle type stuff as well as having the usual fun and games? 'cause it's not very often you get a lot of people in the same room with the same condition. So I imagine we can all relate to similar things. Yeah. 'cause obviously I was a bit nervous going in but then literally as soon as I think I met, spoke to Molly first on the first night and we just clicked instantly 'cause we just knew exactly what we both go through on a daily basis. And I know obviously SMA ranges, but I think we all have one common ground where we all go through the same struggles a lot. So it was just really nice being able to speak to people and make friends with people who know exactly what you're going through. It's definitely something I think we all take for granted. There's something about mixing with people that you've got this sort of unique experience with. I can totally understand why you're coming with that. Let's talk about some of the activities then. I wanna have do a quick little go one word answer from all of you. I wanna know what was your number one activity and then we'll delve into it a little bit more. So Molly, favorite activity? Crate stacking. Crate Stacking. Okay. Sophie. I would say the crate stacking as well, but I really like the abseiling in the rain. That was fun. Abseiling. Okay. Ellie. Crate stacking 'cause we were together. Okay. Ben. I quite liked the archery. It was fun. Big time. Yeah, big time. Yeah, he likes danger. He likes the bow and arrow. And Alisha, what was your favorite? I'd say the crate stacking as well.'cause I think we had to like do it with our carers as well. So it was like we were all involved together, so it's really nice. So I'm sensing a common ground here that the crate stacking seems a very popular one. Molly, talk me through, for anyone listening that thinks how is cracking, like stacking crates fun. Explain to me what this activity involved. So you are in, depending on sort of what support you need, like for your sort of level of strength and things you're putting like different harnesses. So I think a few of us were in like a pool, like rigid seated harness and a few of us were in like a normal harness and then you get kind of hoisted up and your carer is with you stacks a crate underneath you. But then the higher up you get, obviously you can't reach them off the floor anymore so your team around you trying to like pass them up to you on a rope and then you get hoisted up a bit more and another crate gets put underneath. Obviously the higher up you get gets quite wobbly. So at the end I think a few of us got right to the top and then everyone else in the group has to like basically run at the crates and just like kick them down and then you're just like dangling in the air at the end. It's really good fun. Like I thought it would be a bit scary going to the top, but actually I really enjoyed it. It's nice. Like Ellie said, sorry, like you're all kind of working as a team. And it was a really good fun. Really enjoyed it. It's hilarious. I think I have, even though I wasn't with you guys on this particular weekend, I have been to the Calvert Trust myself before as well. I do know exactly what you're talking about and that crate stacking is, it's so random, but it is so much fun. I totally appreciate where you're coming from with that. Ben, talk to me a little bit more about the archery. Archery. I can't hold up a bow and arrow obviously. And they had it on like a mechanism thing and it was like a trigger, and a bit of rope. Now I can't even pull the trigger. So we basically had to like tie the rope to my chair and I just had to reverse and hope I didn't break it. That was good but it was, no, it was good. I did enjoy it all. And can we just point out, I'm presuming there are trained instructors here advising you guys. You're not just doing this making this up for yourself, are you? Yeah. Yeah. I'm glad to hear that. Okay. Sophie, talk me through some of the other stuff that you get up to there as well, 'cause I believe there is a nice swimming pool, hot tub. There was a good swimming pool I nearly drowned in. Oh gosh. So basically there was like the main big swimming pool, which was like a bit cold and there was like a hoist to get in, but there was also like a little jacuzzi that I can't remember who... Ellie, you weren't there, were you? I wasn't. Yeah. But we were kind of we almost switched in with our carers and then I had like the jet, which blew me off my seat. But that was really, really fun. And obviously like all of the changing rooms were accessible. And there was hoisting changing beds and things like that, which was nice. So I don't really ever go swimming because of changing bed issues, so that was really nice. That's great. And we are glad that you are here today to tell the story. Ellie, talk to me a little bit about the instructors, because these guys obviously must have had a whole load of training within their field. They're obviously very disability aware. How were the instructors at the Calvert Trust with your experience? They were really amazing. They were very adaptable to our needs. Some people needed more support, and some people needed less. And they were ready to help when needed. And they answered questions and talked to us about it really thoroughly so that we felt safe at all times. being up in the air isn't very friendly, it can be hostile, but they reassured us all and we felt safe. That's nice. That's really important. I do remember when our instructor, it was almost like having a mate as part of the group as well. They really sort of fitted in well with the team, which is nice to see. It's always good. Alisha was there zip wire in this weekend? Did you have a go? Yeah, with the... Was it zip wire absent? I'm trying... No, we did both. We did like, yeah. And it was absolutely tiffing it down with rain and it was just absolutely hilarious and slow. We all just couldn't stop laughing and the zip wiring was so, like, it was just something that you just never think, like obviously having SMA and stuff like in a regular thing without this trip, like you would just never do it. So just being able to do that was just amazing. Yeah. I love that. It sounds like so much fun. Molly, can you tell us a little bit about the accommodation? Because a lot of people listening today may be able to relate to the fact that some of us with disabilities we don't often like traveling very far purely because, accommodation is not always the most accessible. What's the setup like for the accommodation at the Calvert Trust? So, yeah, I don't need too much help with like hoisting things. So for me personally, I found it really good. Like I could get in the bathroom quite easy with my chair. There was like a shower chair and things like that. I think we were given profiling beds as well as we wanted them. The actual like unit itself was really flat, really easy to get around. Sort of like big open spaces and things like that. So yeah, for me I found it really good. I thought it was super easy, not sort of like having stress that we got there and being like, oh, this room isn't quite right and sort of having to move room, has obviously happened before. Yeah, I found it really good. I thought it was comfy nice and pretty warm as well, actually. I go to hotels a lot and I'm always really, really cold. But yeah, it was... I thought it was really nice. And Alisha, am I right in thinking that before you guys traveled to the location, you all had to sort of fill out kind of like an access form listing the sort of requirements and and facilities that you might need in your rooms? Yeah, we did. So it had things like the hoist, the profiling bed and everything, which was like so nice. And they also had like the mini fridges. 'Cause I think we're all on wrist bands except Molly. But me, Sophie, Ellie and Ben all are. And I think when we're traveling, being able to have like a place to have like your medication at that temperature is so important to us. 'Cause obviously we need to have it. So it was just nice that that was like so used to be available. And yeah, it was quite easy. Yeah. Good. It is nice because it's little things like that, like you mentioning the fridge there that a lot of other people maybe wouldn't appreciate or wouldn't even think about. So, but whereas within this SMA community, that's something really important. So it's really nice that that's kind of been catered for as well as all the accommodation and the activities. Ben, I believe there was some entertainment in the evenings as well. I've heard that there's something went on with a DJ, a funny awkward moment. Do you care to share? That was the best thing ever. So, people with SMA can't move around. And the DJ got on the mic and was like, right when everyone's joining with us. And then he starts yelling the YMCA. And it was just the best day ever. Just all over the people are clocking their arms just looking around like Okay, cool. I want to read it and it was a beautiful moment it was great. I loved it. I love that. And this is the great thing about the community is that probably only as a group we could actually appreciate the humor in that 'cause a lot of other people probably wouldn't see that, but actually to you guys because we're all in the same boat, that's what kind of makes it more fun, isn't it? Sophie, what were your thoughts on sort of entertainment? I imagine you are quite a social kind of girl so tell me... Yeah. I Thought was really nice. Yeah. We had like, the, was it like a disco and the bar that was open in the evening, but we would also like just go out and socialize, which was really nice. Am I missing something? I feel like there was something else. Oh, the quiz night. That was good. Yeah. A quiz night, can't be a quiz, love a quiz. And there's plenty of room isn't there?'Cause from what I remember the sort of you've got the the nice kind of chill out rooms, there's various rooms there's like a TV room downstairs. You've got your bar area and your sort of disco area upstairs as well. I presume that's still the same it's been a while since I've been. Plenty of room to move around and obviously lots of us wheelchair users so it's always good to have extra space, is that right still? Yeah. Yeah, my time in the room. I've lived in the reserve room. And there's like a terrace. Yeah, a terrace. Oh, nice. And Ellie, am I right in thinking that like the majority of people that also traveled with a carer as well, so there's plenty of space to have a carer with you if needed? Yeah. There's carers and family members. So in the accommodation, we shared the room with our PAs to get really comfortable how we normally do at home, so we could feel safe everytime and everyone's needs met as well. Awesome. Alisha do you feel... I look at these Resonate weekends as almost Big Brother style. It's very topical right now, Big Brother's back on our screen. We're chucking a load of, it's basically a disabled version of Big Brother. We're chucking a load of strangers essentially to spend into sort of a residential to spend time together where you kind of get to push boundaries not only physically doing these activities but socially as well. How did you find that aspect? Honestly, it was literally amazing. I think once we found our group it was like was non stop talking about everything. There was never a moment where it went silent. We were just always speaking and that's like, it was just great. And it was just so nice to just be able to obviously 'cause we all know what everyone, we're all going through the same thing and it's just nice to have people who know that. Because I feel you can talk to people about having SMA but no one really gets it unless you've got it. Yeah, totally get that. And as a foodie myself I have to mention the food. Molly, as well as the activities and the accommodation, there's a whole food set up as well, a nice little canteen area where they provide meals for you guys? Yeah. I thought it was good food to be fair. I know a few people were saying it was hard sort of difficult food to chop up and things like that. I think the pizza on the first night was so thick and Ben was saying it wasn't very SMA friendly because it was quite... Wasn't SMA friendly. Yeah. But I thought it was quite nice, honestly. I like good puddings and things like that, and I thought I enjoyed it. Yeah, I love my food. Journalist Ben, not happy with the pizza, noted. And this is probably a very, very silly question guys. But would this be something you would be interested in doing again. I feel like I'm getting a few nods of heads here. Yeah, definitely. That's a good thing. Overall, we all enjoyed the experience and sort of the physical and the social. And just on a final note I'd love to go around and sort of have sort of one word to sum up your weekend from you guys if you can sort of go around. Think of a word that can really describe how you felt sort of leaving the weekend. Ben, let's start with you. I'm gonna go with, included. Included, I like that. Alisha? Oh, Ben, you made that really like card really good. I don't want to be worrying so, I'm going to say #TheCrippleClub actually because this is the fun story, actually. On the quiz night, we decided to name our group #TheCrippleClub and we absolutely all found it absolutely hilarious. No one else did, I think. 'Cause when we won the quiz and I had to say the Cripple Club, I think everyone else was just like, are we meant to laugh? Is it okay? We were just absolutely laughing. But yeah, that's who we are. And we love that. You've got your own hashtag, it's official. Nice. Molly? I think it's happy. It was just a really good weekend, met some friends for life, I think. I love that. Was you sad when you were leaving? It was that sort of saying goodbye to everyone. Yeah, we were all so upset. We were. Ellie, what would you say, how would you sum up your weekend? I would say it's just amazing. We crossed so many boundaries and met with so many people. So yeah, amazing. Yeah. And Sophie, you agree? Yeah, definitely. I'd say maybe community. I think it was really nice just to meet new people and all come together and be able to bond over something that I guess has been, not to be depressing, but a struggle, if you know what I mean. And just turn it into something that was really nice. Yeah. Yeah. Find some common ground between you all and just sort of forget about all the general day to day worries for a few days and just have some fun. It sounds like an amazing opportunity. Lastly, Ellie, if I come to you with this question, for anyone listening that maybe struggles with a bit of maybe social anxiety or they might be thinking, I would love to do this, but I don't know if I can do it. What advice could you give to sort of encourage someone to get involved? I think it really helped me that I was in the Resonate Weekend. So before the adventure, I was able to speak to a few people and get to know them before I actually met them. And then when we met them in person, it was much easier to then connect. It was really nearly a little bit a lifesaver. That's like me and Molly, respect each other and that really helped me. That's some really good advice. I like that. Anyone else got any sort of advice that they'd like to add? I think I'd say just don't be worried because everyone was just so nice. I actually wasn't on the WhatsApp group and then I got there and I was like, guys, can I be added please? So I didn't know, as I said, anyone other than Ellie, but everyone was just so friendly. I think I managed to talk to most people when we were there and it was just so lovely. Awesome. Oh, well guys, thank you so much for sort of coming on the podcast today and sharing a little look back on your weekend. It sounds like you've all had good fun and it's even better to see that you guys are still in contact and you've got this blossoming friendship now. So hopefully, you guys, I'm sure you'll be reunited again soon and do it all again. But yeah, thank you so much for joining us today. Thank you. Thank you. And there we go. Big thank you to my guests for joining me on today's podcast. And we have a very special announcement, a little surprise for you at the end of this episode, we can exclusively reveal that we have not one but two bookings in place for Resonate Weekends happening this year. We have another adult weekend taking place from the 26th to the 29th of July, back at the Calvert Trust in Exmoor. And we also have a Resonate weekend for teenagers, which will be taking place at the Cal Trust The Lakes, and that'll be taking place from the 13th to the 16th of September. So make sure you keep an eye on the SMA UK socials to keep an eye out for any information of how you can get involved in that. As always, thank you for supporting this podcast and you can keep up to date with all our episodes on the SMA UK website and YouTube channel. 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.