19 - Part 3: SMA Life Through The Ages

Welcome to the Living With SMA Podcast.

In PART 3 of Episode 19 of the #LivingWithSMA Podcast, SMA UK Host Luis Canto E Castro chats to 18 year old Maxwell Mcknight 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.

You can contact SMA UK on the following social media platforms ⬇️⬇️

twitter.com/SMA_UK_
facebook.com/SpinalMuscularAtrophyUK/
instagram.com/sma_uk

If you do have any questions for Luis, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

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.

Transcript

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0:00:02.4 Intro: 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.

0:00:46.5 LC: Hello everyone, and welcome to the next episode of 'Living With SMA'. Today I'm joined by some fantastic guests to talk about their life with SMA, what it was like when they were born, where they are today, and what the future holds for them. So, let's jump straight into it. I'm joined today here by Maxwell.

0:01:07.1 MM: Hi.

0:01:07.4 LC: Maxwell, thank you. Why don't you tell us a little bit about yourself, like a quick introduction and then we'll get into the awesome stuff?

0:01:17.8 MM: All right, so I'm 18-years-old. I've currently just finished A-levels, and I'll be going to university in September to study Business Management. I'm a very 'Businessy' kind of guy. Yeah. [chuckle] My favourite subject, yeah.

0:01:32.8 LC: Awesome, awesome. And what type of SMA do you have if you don't mind me asking?

0:01:36.9 MM: I have SMA Type 2.

0:01:38.5 LC: Awesome, awesome. So same as me, I also have SMA type 2.

0:01:42.8 MM: Oh, cool. [chuckle]

0:01:43.9 LC: Yeah, so if you don't mind me asking, when were you diagnosed?

0:01:51.8 MM: So I was diagnosed just before I turned three at Hinchingbrooke Hospital, which is the local hospital. I know it was quite hard on my parents. There wasn't really a lot of information that was really given to them. I think they said that I probably wouldn't live out of my childhood. It was quite a hard thing on my parents to go home and tell everybody, but they were so wrong.

0:02:22.1 LC: Absolutely, I can totally relate to that, it seems to be something that's very common from previous years. The same with me, I was diagnosed before my 3rd birthday and doctors also said that I would never get to this age and then that age and then that age, to the point where we just stopped listening and carried on living, I guess. So, from your recollection, what kind of support was available to you and your family post-diagnosis?

0:02:54.9 MM: I know there wasn't really too much. I know there was the Jennifer Trust that helped me when I went to reception, all the way back then. There was a few charities and stuff like that, that helped me get my first wheelchair, so I was in a power-wheelchair at the age of four.

0:03:13.5 LC: Awesome.

0:03:14.0 MM: Which was quite lethal actually, [chuckle] it was a very fast wheelchair, I was very dangerous.

0:03:21.8 LC: Epic.

0:03:23.3 MM: But I think that was about it. And then I went to GOSH, Great Ormond Street, and they were the first people that actually had any real information about SMA really, and they helped my family quite a lot, like getting me into like physio and stuff like that. That was kind of the real first time that there was really anything, I would say.

0:03:52.4 LC: Okay, and has there been anyone that you have been able to turn to in terms of emotional or mental health support?

0:04:02.5 MM: Not really, I kind of knew someone that lives quite close to me, Ross Hovey, who also has SMA. But I didn't know him until I was a little bit older, my parents did, but I never really had any kind of grown-up conversations with him until quite recently actually, we just got a little bit closer. But sometimes I do go to him when I need to talk about anything, especially now that I'm growing up and I've got more responsibilities myself and kind of just learning how to deal with life with SMA. And he's got quite a lot, well, a lot of advice to give me. So, I like going to him. Yeah.

0:04:44.3 LC: Yeah, he's a cool guy. I also know Ross. He's really quite a character. He's not afraid to share his opinion and he's very wise, very wise beyond his years.

0:04:56.6 MM: Yes.

0:04:58.1 LC: So in terms of SMA UK, how much do you know about us and have you attended any of our events? Have you reached out for any support in the past?

0:05:14.3 MM: Personally, I've never really reached out for any support, I've been to a few of the, I think it's the Christmas parties, when I was younger, which I really enjoyed, especially like the gaming there, that they have there. They have like an adapted gaming session, I'm quite a keen gamer.

0:05:33.1 LC: Awesome.

0:05:33.2 MM: So I was quite excited. We talked to the guy there and I got a few signed things that he managed to get me, which is really cool.

0:05:39.9 LC: That's cool.

0:05:40.5 MM: By the developers of one of my favorite games. But that's about it, I would say, in terms of events that I've been to.

0:05:50.7 LC: Okay, and in terms of the future and what you're hoping to achieve, I know that you said you're going to Uni, so what are you aspiring to do with your life going forward?

0:06:06.8 MM: Awesome. That's a very big question. I'm just taking it as it goes, really. I am aiming high, I wanna be a CEO one day. Definitely, I wanna do quite a lot of stuff, I want to be like Ross with all the things that he's doing. He's like doing one job but then he's doing another job. It's absolutely amazing. But yeah, I'm very keen to do well for myself.

0:06:33.8 LC: Fantastic. Awesome, awesome. And tell me, in terms of school and college and wanting to go to Uni, How well have you been supported throughout that journey?

0:06:48.3 MM: I would say it's been quite hard, definitely a lot of fights that I've had to do to get the support that I need. And I think as I've got older, it's kind of gone from my parents to me, kind of like fighting for myself more. And I've realized how much they actually have to fight for. There's been so much I've been kind of like excluded from that my parents try and make me, like, get me to do. But my school was quite bad on accessibility kind of side of it. Like for example, sixth form, I haven't actually been up in the sixth form, like the first level for the two years that I was there. 'Cause of the fire risk plan, it took them forever to do that and we were fighting like every single day for them to do it and it took the whole two years I got there, like in the last week I think I went upstairs like once and that was it.

0:07:53.8 LC: Wow! Okay.

0:07:55.2 MM: Educationally, it's been amazing, like I've done quite well for myself, but I think that was kind of more me taking it into my own hands and doing like a lot at home to catch up 'cause of like doctor's appointments and stuff like that. But yeah, it was quite hard.

0:08:16.3 LC: All right, no problem. And when we look at, I guess, you have someone to look up to in Ross, which is great. You have a great, by the sounds of it, a great home environment, which is fantastic. You've been to some SMA UK events. You're aware that SMA is there to help, if you need it. Looking at what you've been through as a child all the way up to where you are now, what would you tell your younger self? In hindsight, what would you say?

0:09:01.2 MM: I think in general I was quite a shy person. I'd say to definitely be more confident in myself and speak up for myself more. I was kind of quite quiet. I still kind of am sometimes, but I definitely say to my younger self to stand up for myself more and intervene definitely more, also to drink more water 'cause I never used to drink water, but [chuckle] that's just a separate thing. I don't know if it's like with everybody with SMA, but I never used to drink water. It's kind of funny 'cause I never wanted to go to the toilet 'cause I didn't wanna miss out [laughter] 'cause it used to take me longer, but yeah. [laughter]

0:09:43.1 LC: Okay. Well, my reasons are a little bit different, but I hate water. I'm 37-years-old and I still don't like water, so you're not alone on that one. [chuckle] I will drink 11 cups of coffee and four cups of tea, so that I make sure I'm still being hydrated, but it's not gonna be water. I'm not a fan. So you're not alone with that.

0:10:05.2 MM: Yeah. Water's a bit boring, and I can't lie. [chuckle]

0:10:07.8 LC: Absolutely, and in my opinion, there's more chemicals in water than anything else.

0:10:13.4 MM: Oh definitely.

0:10:14.8 LC: I always tell my carers, that water is there to bathe, wash dishes and your clothes.

0:10:22.9 MM: Yeah.

0:10:23.1 LC: And to cook, that's it.

0:10:24.8 MM: Yeah.

0:10:25.2 LC: That should be the only purpose of water.

[laughter]

0:10:28.7 MM: Definitely.

0:10:29.5 LC: So I mean, obviously we needed to water the garden and things like that, but in the home in general. Yeah, that's just my opinion. I'm not a fan. Maxwell, thank you very much for being with us today and sharing your story. It's really great to hear the similarities. It kind of hopefully will show the community that we're not alone in our experiences. We're not alone in the challenges that we face and we're not alone in the good times that we have.

0:11:00.7 MM: Yeah.

0:11:01.2 LC: So, thank you very much for your time and hopefully we'll see some great things coming from you and who knows in the future episode we might be speaking to CEO Maxwell.

0:11:12.7 MM: Oh definitely. Definitely.

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0:11:16.2 Outro: 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.