If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
Living With SMA - 'You've Got a Friend in Me' 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. Welcome to part three of You've Got a Friend in Me. In this final part, we talk about the benefits of being a PA, the media representation of PA's and the positive relationships between PA's and why people should consider becoming a carer. And Lauren, from your point of view, obviously, a chance to work and go on holiday. I imagine that sounds quite nice. What other rewards are there, would you say, to being a PA? What benefits come with it? I like seeing Conner happy and Conner looks after me, as well. And I just like seeing him happy and doing stuff that he wants to do. For me it's rewarding watching that as well as learning about myself as well. What like... I sometimes don't have a lot of confidence and I'm not very good at explaining things. If we do go out or on holiday or anything like that, then he's the one that teaches me new things. So yeah, it's sort of like a, both of us learning about together and sort of touching on sort of Luis and Conner both there mentioning holidays. I don't know if you've both ever seen the film. I wanna talk a little bit briefly about sort of media representation of PA's and care in general. I don't know if you've ever seen the film, 'The Fundamentals of Caring'? It sort of a follows a gentleman with muscular dystrophy who wants to go traveling and it's all about this, the film sort of, it's got a cheeky funny take on it. The relationship between the main character with muscular dystrophy and his caregiver. Luis is smiling as if he's seen this film. I personally love the film. I think it's great. I don't know what your views are? Yeah, I mean, I think it's a brilliant representation of what a carer and service users relationship could be. I think it speaks volumes in comparison to the difference between employing someone yourself and setting the rules yourself and having to do it with an agency or a care company because, for example, I have equipment in my home right now that has been here for six months and the carers still aren't allowed to use it. That's equipment that I could potentially heavily rely on if I get ill and knowing that my carers can't use it, it does, it gives you a lot of anxiety. And I think that movie is a very good representation of the possibilities. If you are in the position to employ your own staff and make the rules yourself, it really allows you to tailor that experience. And I mean, it reminded me a lot of my relationship with Leonard because in South Africa, it's a little bit like the wild west. There aren't many rules when it comes to care, unless you're in a care home. So when you've employed someone yourself, it's really down to you and how you want to do things. So Leonard used to be off on weekends and I'd have another carer who came in, an assistant over the weekend. But we would go away together. I've been fishing with Leonard. I have done so many things with him around and it was all purely because he was there to help. In South Africa, I never really had equipment for lifting. So Leonard would be picking me up and moving me around. And if it wasn't for him, there was a lot of stuff in my life that I experienced from the age of 19 until I left South Africa that I probably never would of done and that's saying something to admit that you are only able to experience those things, because there was someone there to help. It's scary when you think about it. And I think that movie it kind of makes me envious because I miss that relationship with Leonard very much, and I'm seeking for that again. I know that I probably will never, ever be able to replace Leonard on that level, but if I can get close to where we were, I would be a very happy person. Aw, shout out to Leonard, wherever he is now, I'm sure your paths will cross again one day. And as we sort of come to a bit of an end guys, I want to sort of just wrap up with you guys on a positive note. We're promoting the positive relationships here between PA's and for anyone who's maybe watching and potentially thinking about joining a career in care, what would you say, Conner, to someone who's potentially thinking of becoming a carer? What message would you say? I would say it's not a job defined on paper. If you're a caring person, kind of instinctively, I don't think, doubling down on Luis's point earlier on where as clients, sometimes we are a bit cautious around age, but the more experienced I get, the more I'm understanding that it's all about who you are as a person and not your experience or skill set or any of that. It's purely, are you a caring person inside? And do you have a connection or relationship with the potential client? So for anyone looking to get into it, I would definitely recommend, and I'm sure you know yourself, if you're a caring person. Yeah. And Lauren, sort of similar question to you on a final note, what... You have the sort of hands on experience here. What would you say to anybody who is thinking about joining the care industry? Oh, it's definitely something to give it a go. Obviously like it's not for everybody. But it's just such a rewarding job for me. Like Connor is part of my family. I think it's just so rewarding. And if people have got a kind heart and they feel that they can give that little bit to somebody else, then it's definitely something to do. Fantastic! And Luis, over to you, some words of wisdom. No, no, no words of wisdom. What I would say is if you're looking for a job that will push your boundaries and make you giggle hysterically with tears running down your face, care is probably one of the very few jobs that can give you that experience. I know that for some people it will be daunting, but once you're in it and you see the joy on your client's face or the way that you've impacted their lives for good that's when you'll really see why you should be okay. What a lovely way to end today's episode. Thank you guys so much for sharing your personal experiences as well and opening up. I know it's not always easy and especially thank you to Lauren for coming along and Connor for allowing this opportunity to really let us delve into the fact that PAs are not just for care and showing the relationship gives us the opportunity here to show both sides of the stories and see how positive and beneficial a job in care can really benefit both sides. So it's a lovely opportunity. So thank you very much. We hope you guys watching have enjoyed today's episode and you can catch up on any other episodes by visiting the SMA UK website. We will be back and we will see you soon. 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