Welcome to the Living With SMA Podcast.
In PART 2 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 56 year old Joan Turner about what life is like with SMA.
As August is SMA Awareness Month, we are shinning the spotlight on Spinal Muscular Atrophy by inviting 4 different guests from across the SMA Community to share their own lived experience.
Watch this episode on our YouTube channel here.
#LivingWithSMA #SMALifeThroughTheAges #SMAUK #SMA #SpinalMuscularAtrophy
Each of our guests today shares their own personal views and individual stories.
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If you do have any questions for Luis, Joan and the team or would like to participate in any of our podcasts please email firstname.lastname@example.org
Living With SMA - 'SMA Life Through the Ages' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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.
Hi there, and welcome to the Living With SMA podcast. We're here to have conversations about living with Spinal Muscular Atrophy. Throughout this podcast, we will be covering lots of different topics from preparing for university, getting the most from your personal budget, sex and relationships, and lots, lots more. So we invite different hosts from across the SMA community to come together here. We want to answer your questions, provide you with useful tips and recommendations and also share personal stories. So please do reach out and connect with us here at the charity SMA UK. Thank you for listening, and we hope you find the podcast useful. Hello everyone. Welcome to the next episode of Living With SMA. And today I'm joined by a whole wide range of guests and we're gonna be focusing on what life is like with SMA, from when we were diagnosed up until, where we are today to see some of the differences and some of the things that we have in common, and hopefully it can be some philosophic insightful tips and right now I'm joined with Joan, and hopefully her story will be inspiring to others and to anyone that's listening. Joan, if you don't mind, if you can just give us an introduction about who you are? and so we know who we're talking to. Hi. Yeah, I'm John Turner. I'm from Glasgow in Scotland. I've got SMA type 2, 56 on Monday. So I've got a lot of experience of SMA and living with it and enjoying my life really. And now I've took early retirement, so I'm enjoying it even more. It's brilliant! That's fantastic. And what was your career? What did you do before you retired? I worked in the housing sector with repairs and then later in factoring and dealing with owners and enquiries as a Business Advisor. So I was always really busy in dealing with resolving issues, complaints, inquiries, just non-stop all the time, never ending. I worked full-time, managed that, and I think that probably helped being em... you know, kept on the go all the time. I would be up early every morning. I'd be away at 7 and I wouldn't be finished until 5 and that was five days a week, right up until maybe about four or five years ago. And I reduced it by a day, but I still mainly done the same hours, but I just felt that I love my work and just wanted to keep going, I love being busy. And I managed it, physically it was alright. Maybe a lot of people wouldn't have been able to, I get that, but I think when you've got an ability then keep going, then I would always do that. I think that probably looking back the one thing I think, I should've done early was move into my new... My own house 'cause I will live independently. And I think, that would've given me even more motivation to do stuff, but I've done quite well working, so I'm quite happy with that. Awesome. Yeah. Awesome. Really glad to hear that. And tell me, when were you officially diagnosed with SMA? Probably when I was maybe about 3, 3 around about that. I vaguely remember some things, I think... Probably my mum and dad knew something wasn't quite right. But bear in mind that's over 50 years ago. Probably never even heard of SMA or I don't even know if muscular dystrophy, how much was done then? But then they did realise something wasn't quite right 'cause I wasn't walking, crawling more than anything, and then I got tested. So I can remember being in the hospital, getting a muscle biopsy done which it was like a whole operation. And I've still got the scar. Now they just go in and take away a bit tissue. But no, it was a full blown operation. So I had that and that's when they told me that I had SMA, but when I look back at my records now, it says I'm type 1, which obviously I didn't have, but I think that was lack of... general understanding then. And probably a bleak outlook. My mum was told, well, probably I would never go to school, and lifespan probably not very good. And I don't think there were any sort of treatments then to look forward to what you could do and what you can achieve. Compared to now what we have done. And so... Yeah, I can totally relate to that. That's... This episode has really highlighted for me, how similar life has been for people with SMA. So that story that you've just told is very similar to mine. My mum and dad obviously knew that something was wrong, and I'm 37 now. And even back then, there still wasn't a lot of data, especially in South Africa where I was born and just kind of the same, like your child is not gonna live past a certain age and you know, don't expect much from my life because there's not much that we can predict or tell you because it's a condition we don't know much about. And it's, for me, it's just given me so much reassurance and I know what my life has been like, and I have achieved the things that I've achieved because I've pushed myself to do that. But knowing that there's so many of us out there that are doing the same thing, it's really inspiring. You've been around longer than I have and you've lived a very full life by the signs of it, which is fantastic. That's amazing you know, and it's really good to hear that SMA didn't get in the way of you being Joan, it's really great.. Maybe it defines you in a sense, it makes you what you are but you've just got to work with it. So I think if you've got a positive outlook in life and want to do certain things, then you should be able to achieve that and definitely... Absolutely. Don't sort of put things in your way or, people will tell like that you wouldn't be able to go to school, well you did go to school and got a full education... able to work like anyone else. So there's no reason why you shouldn't be able too, and then now there's things like... Absolutely. Treatments there's Risdiplam and things like that, I don't know if you're on Risdiplam? You never thought would've been, yeah. So things like that are great. There are much more opportunities out there and available for kids. There's no reason why they can't live a full and active life. I think when I started school, I didn't even have a wheelchair. That's how basic things were. They never... When I went to go to school, obviously I can't walk, and they're like, well how do you move her about? Well we carry her and so eventually I got a wheelchair and you look at young kids now they're zooming about with all sorts of gadgets, and... Yeah it's really great to see how times have changed and the technology that's become available and the facilities that have become available for us as people with disabilities, not necessarily just SMA, but the disabled community as a whole. I guess the next question that I would have for you is, by the sounds of it, you've answered it a little bit already, but, what kind of support was available to you back then with a post diagnosis? I don't think there were much support like when you were younger, maybe I was with the school, there definitely wasn't. When eventually, I went to a school that was mainstream education, but it was still a separate school from able bodied, which I don't think is right. I think that's just totally wrong. Everyone should be mixing together. We're doing the same education. All we need is a more accessible building. Just like you are in your workplace or your house, there's not any difference. So I think we should all be integrated together. 'Cause I know when I started work, you had a lot of people's different attitudes and what they seen, because they've never grown up with anyone with a disability. So, I mean really good friends now with that lot, and they've all admitted that in the beginning they saw it, "Oh God, is she going to have a chip on her shoulder?" And you know are we going to say something to her which she won't like and react and anything that's, I know you, you're not any different, and the kids feel at ease. But then why didn't they go to open school with that? So that's why I think we should mix from a very young age. My niece who's ten, has grown up with me in the wheelchair and she helps, she does things and doesn't even thinking of it. And you're probably the same with family and friends, people now having kids, and which way back then that probably was never going to be heard of. But now you hear lots of SMA mums. We weren't thinking like that then, but there weren't the support. There were those things like the SMA group in Muscular Dystrophy UK now, and I joined the SMA group when it first started as the Jennifer trust. And it was Anita, whose daughter had passed away with type one. And that was how I got involved then. So it was a good resource. It was good to be sharing stories with other people and experiences. I think that really helps everyone. Then I get involved with the Muscular Dystrophy group, but I'm not saying that I was involved too much. I was always doing things and loved going out to concerts and parties and whatever, pals and that, so I probably wasn't heavily involved in it, but it was good to know that, that resource was there. And certainly now I think you use it, you've got the internet, there is so much there for you now, which back then. Absolutely. You didn't know anything, really. It's absolutely that's spot on. SMA UK has really become a foundation in my life, coming to the UK 20 months ago and having my understanding of SMA, because when I was diagnosed, I had a muscle biopsy and all I was told is I have a version of SMA called Kugelberg Welander syndrome, and you Google what that is. And you find out that it's SMA and you're like, Okay, I've got SMA. And then you come to the UK and the doctor tells you, Well, technically, we don't acknowledge muscle biopsies as a form of diagnosis anymore. So we need to do a genetics test. And once we do that, we'll be able to tell you what type you actually have. And it's only recently that I found out, that I'm type two. And you were talking about treatments that are available, which were never available back when we were younger. And I'm waiting for confirmation of delivery date of Risdiplam, so I'll be starting that journey soon. No that's... And I think, when we look at some of the treatments that are available for the youth of today, there is amazing things happening in the medical field and in the pharmaceutical industry that could be making a major impact and make a major difference in people's lives. And help them live a much fuller life than probably what you and I and others similar to our age have been able to do. Because we never had that kind of assistance available. And I think SMA UK have done a fantastic job to try and be that resource, as you said, to be the go to organisation, to help people understand SMA. To know what's available for them and to kind of be the beacon of hope that you can be whatever you want to be, it doesn't matter, whether you're type one, two, three, and beyond, you know? So it's really great to hear that and the last question I have for you is, looking back on your life so far, what's the one thing you would tell your younger self? To be as active as you can. And to definitely, live independently. Wish I'd done that early twenties. And even though, I love my mum and dad and they're brilliant, they still are, still help, them... I think, we could all of had a better and more productive life, cause I could have been able to do more and so could they... And I love now that I've got so much independence, been living on my now for almost 13 years. And being able to make your own choices and do what you want in... Such a different life. And... But keeping active, I think looking back, I wish I had done more my exercise, I used to do it a bit at school and go to physio and things and you leave school and you go to pubs instead of going to physio. So yes I... That... And all that movement will still be there, then you realise, no, that movement is in there when you go to do it. So I think, they're a bit more conscious now about how exercise can help a bit more rather than... I think, we all used to think, well, your muscles aren't going to improve. So why bother doing it, but now we've got risdiplam and different exercises. So who knows what's around the corner I never imagined I would see any form of drugs. So it's brilliant that we've got that. But I think, technically we will... That's all right. Oh, I can totally, relate to that. I also thought that in my time I would never see a treatment. I think, I even remember having a conversation with a friend in my late teens saying that there'll never be a treatment for this. It's too complicated. So why bother? And in hindsight, I... For myself as well, I think, wow, you knew so little. So and it's crazy. And I'm really excited to see what the future holds and to able to do episodes like this with people like yourself and the other people on the episode with us, to just show others that anything is possible. And I just wanna thank you for being here today and for sharing your story. And I hope we will cross paths again because it's a great story you have to tell. Thank you. Has been nice chatting. You've been listening to the living with SMA podcast. We hope you can join us again next time. But in the meantime, please, don't forget to like and subscribe. So you don't miss an episode. You can find out more on our website at smauk.org.uk.