The Palsy Podcast - Episode 18 - Ricky Smith

 Ciaran is joined on episode 18 of The Palsy Podcast by Ricky Smith. Ricky talks about his experience at school, having first gone to a special school, and then moved to mainstream. Ricky has been a youth worker, and supported young people in the Merthyr Tudful. He is also a prolific sportsman, having competed in darts, football, and has now started wheelchair tennis. He is currently working in sports development in partnership with Merthyr council to help other disabled people to get involved in sport. 

Transcript

SPEAKER_01 0:01

Hello and welcome to the Palsy Podcast with me, Q and Fitzgerald. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as March is Celsey Awareness Month to market, I've decided to interview interesting people who have cyber palsy from Wales and beyond every day in March. If you like this episode, please stay tuned for more throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to episode 18 of the Palsy Podcast. And me, Q and Fitzgerald, we're over halfway through and start to feel more confident that I can actually complete this. So for those of you who may be just tuning in for the first time, this is the Palsy Podcast. And in the UK, March is Cyber Palsy Awareness Month. So every day in March, I'm gonna be interviewing someone interesting who has CP learning about their life experience. Sometimes people I don't know, but sometimes friends of mine, like my guest today, Ricky Fresh. Hi Ricky, how are you doing, mate? Hi, I'm Rick OK. Thanks for having me on. Thanks for doing this. Really good to speak to you. Like, I'm gonna open it up with like the first question and I will ask everyone who comes on.

unknown 1:48

Okay.

SPEAKER_01 1:49

Like, what was your experience growing up with CP? And was there a moment where you first felt different to other people?

SPEAKER_00 2:00

Okay, um, well, as as you know, I I was born uh with CP, I think I was diagnosed fairly early on. And um I grew up with it firstly, it was completely normal for me because I was born with it, I didn't know any different. Uh it's just how I live my life, it's just how it was. But when I when I first realized that I was different, because I grew up with an older brother who's only 11 months older than me, uh he is able-bodied, he didn't grow up with a disability like I did. And um he was able to do things physically, he was able to climb fences, climb trees, he he was a lot stronger and faster than I was, and that's when I thought, yeah, something is something is different, you compared to even though I tried, you know, I wasn't I wasn't uh I wasn't as strong and as fast as he was, and he was able to do things a lot uh a lot more efficiently than I was, should we say. So that's when I first mocked this to you.

SPEAKER_01 3:04

Did you find it frustrating that not being able to keep up with him and wanting to do the things that he was doing? Because we didn't talk about later, you were a very sporty guy. So was it frustrating that you couldn't keep up with your brother and maybe your mates?

SPEAKER_00 3:24

Uh yeah, definitely. I I remember early on, uh particularly I remember my mother telling me when I was really, really small, maybe two or three, I I so my mother uh said to me that I uh whether I knew something was different, and I used to get incredibly frustrated and I would take take it out to myself. I would be, you know, as a as a toddler, really, um, I'd be sort of get frustrated easily. I would I would hit the floor, she said. That was one particular thing with my I'd bash the floor on my hand or my head because I get frustrated, I couldn't do what he was doing, and things like that. So I I definitely did get, and I remember getting uh frustrated because I couldn't do the same things in the same way that my brother was doing it. Yeah, I can definitely remember that early on in my life, yeah.

SPEAKER_01 4:18

And like what was what was school like for you? Because you went to a special school for the early part of primary school. Like you uh we I know you quite well, you're very bright, but so was that the dumb thing in those days that if you were disabled, you went to a special needs school.

SPEAKER_00 4:40

Yeah, I I think so. In in in my case, you're talking, I was born 83, so this would have been mid-late 80s, maybe I was in a special needs school. I I think I trans, I think I transferred over in '91 to a mainstream school. So back then, I think it was uh the dumb thing to go to a special needs school, you know. And uh where my uh with the cerebral palsy, obviously it affected me physically, but intellectually, I was quite smart. I was I was at least on the same level as my brother who was in the mainstream school.

SPEAKER_01 5:20

And like, did you find it difficult in special school because you were maybe a bit you had that intelligence, you didn't ever learn in this world, you did you feel I don't belong here kind of thing?

SPEAKER_00 5:35

At times, yeah. And I I I made I made some um great friends and some great memories there, you know, and uh I did enjoy my time there, but I was deaf I was definitely uh intellectually probably ahead of some of them in the class at the time, you know. And I used to get frustrated because uh I was I wasn't getting stimulated too much, maybe. But uh yeah, I I was very I was very young, and I remember I remember I had a I had a good overall experience there. I don't I remember things like um art competitions, writing competitions we used to do. Uh the sports days were always fun because I was always you know either I was either winning or coming second, you know.

SPEAKER_01 6:20

So I have good memories there too. Where did that love of sports then? Was that a thing from childhood that you always liked being after being sporty?

SPEAKER_00 6:32

Yeah. Yes, yes. My my family, my my uncles, my cousins, older than me, obviously, were all sport mad. There was always sport on the TV, someone was always doing something. It was just a sports mad household, really. Uncles, aunties, cousins, everybody was the same way, you know. And that's how because like I remember as a child going to my nan's house, my nan's house was like the my nan and grandpa's house. It was like the central hub, so everyone used to go there. And you would always have horse racing on football, snook, uh, tennis, union, everything was on, like, and that's what I remember growing up.

SPEAKER_01 7:15

That's amazing to be around that, and then we're gonna talk about all the different sports you've done later in this episode. But back to school, maybe for a minute, like then going into the mainstream environment in primary and then secondary. What was that like? What were you good at? What did you enjoy?

SPEAKER_00 7:37

Okay, uh, yeah, I I can I can remember, I can remember it clear as day in my mind. The first day I went to the local primary school. I can remember it clear now. And my brother attended there, um, the local kid, my brother's mates. I didn't have too many mates locally at that time because I didn't go to the local school. And um, so I knew my brother was there, so I was excited for that. He was older than me, so he was gonna look after me. His mates said they were gonna look after me, so I was more I was nervous and uh well, not so much nervous, apprehension because it's a new thing and you don't know anybody in the class and things like that, you know. So I was apprehension going, but I was excited at the same time because I was going to the same school as my brother, and and that was it for me. I was only a child, right? And I just couldn't wait to be on the yard with my brother, and that was it.

SPEAKER_01 8:31

Yeah, that's it. Yeah, that feeling oh, you're gonna be with everyone else, you're gonna be part of something feeling. Yeah, that's right, yeah. And like, what were you good at in school? What did you enjoy? What what subjects?

SPEAKER_00 8:49

I uh junior school time I I I pretty much um I pretty much enjoyed it all because if like because I was able to create my own friends then, I had my own friendship groups and I I pretty much I pretty much chucked myself into the school. I was involved in everything, I liked pretty much all the subjects, my teachers were really good. So for me, I had a pretty uh positive experience, you know. I enjoyed I enjoyed uh uh writing, I enjoyed creative writing, I enjoyed art, I enjoyed sport, I pretty pretty much had a pretty good experience. As I said, I was able to gain long-lasting friendships from those uh experiences, that type of thing. So yeah, overall it was pretty good.

SPEAKER_01 9:37

And that did that guy over into comp then, like was comp a bit different? Did you experience any bullying or anything like that?

SPEAKER_00 9:47

Comprehensive was was different for me purely because of the scale. There was more people there. Uh I was older at that time. Uh and it was it was more difficult for me to adapt early on. I had some problems early on. Uh year seven, year seven particularly was pretty rough. Um but after that after that, I was I was I was okay, you know. I I was okay. I again I still had the same friends. I I made a few more friends. I'm very lucky in that regard that I had that friendship group and that support.

SPEAKER_01 10:30

And that that is how important was that in terms of supporting you, people who led you back, good mates that you could rely on, so stuff like that.

SPEAKER_00 10:40

Heart crucial, absolutely crucial for me in my experiences because I was very, very lucky because I have close friendships, I was able to maintain close friendships, and and those mates they they got me through really during the tough times as well. And um, I'm very lucky in that regard because I know that a lot of disabled people do not have those same experiences that I had, you know, and feel isolated and feel lonely and not able to get out to make friends and stuff. So I feel very, very fortunate in that regard, you know.

SPEAKER_01 11:15

Absolutely. I feel the same. I feel really lucky that I'm good, I've got a good circle of friends, got a good support network. And then was it after school, straight after school, that you decided to go into youth work, or was that later on?

SPEAKER_00 11:32

Later on, later on that. Well, so I left school in uh 99. Uh I done my GCSE, I'd done okay. I I I I done okay, I had enough to get in college, but the what I didn't uh what I didn't mention to you previously when I was in comprehensive, what was difficult for me in comprehensive? I missed a lot of time through illness. Oh, was that related to UCP? Yeah, yeah. I had a uh tendon lengthening operation when I was just turned 13, and that meant I missed about 18 months worth of school. Oh, okay. Because I I had to um I was in a wheelchair at that point, I had to learn to walk again and stuff like that, and that was pretty pretty tough because I would have uh work sent home, I was missing my school life, I was missing that social thing. Although, although I must say, friends and family during that period, my close friends, they used to come and visit me, they used to come and see I was alright. So in in that sense, I was okay, but I I did struggle during that period for about two years, and I missed a lot of school, and I I never I think that I never got it back, if that makes sense. I never quite caught up.

SPEAKER_01 12:51

Did you feel then that when you went back that you were behind academically, like everyone had moved on and you were still where you were two years previously?

SPEAKER_00 13:02

Yeah, I yes, I I definitely found that because when I went back, when I when I was in school, I was in uh top sets one, two, and when I went back, they dropped all my sets where I was in the lower sets all of a sudden, and I was thinking, whoa, what's what's going on here? Because but when when I was coming back, the standard of the work was much higher than when I left, and it was hard for me to try and catch up then. And I I don't think I don't think I ever really did at that time, you know.

SPEAKER_01 13:37

So like like after like were you like disappointed because you just said did you go on to college and then university? Oh because you missed that much time, was that difficult for you?

SPEAKER_00 13:51

Yeah, yeah, I I was fortunate. I I did get enough to get I'd done a uh national diploma in sports studies emerta. Uh I was fortunate enough to get on to there, but through illness again, I I was unable to complete the end of that, so I so I never I never actually completed it in the end. There were there was one or two modules missing. But that but in terms of that as well, okay, the the illness part is you know, I didn't that was awful again for me, but I again I go back to this point of uh social circle, I made friends, which I still talk to to this day, and it was it was a valuable experience, and up until again, illness had struck, you know.

SPEAKER_01 14:41

And was that frustrating for you wanting to do all this stuff being held back by illnesses by the effect of your disability?

SPEAKER_00 14:52

Yeah, yeah, definitely, because because you you you sort of well, I I did anyway, uh mapped out a plan in my head, right? I want to do this, I want to do that. Like when I was younger, I wanted to go down the coaching route, but I realized that that was almost impossible because of my physical limitations. Uh so yeah, I I found that uh very frustrating. And it the what what um I learned to do then was I had to try and find a new path and try and find a new way. Okay, I knew I wanted to be involved in sport in some in some capacity, but it was how am I going to be involved in sport? And it was navigating those navigating those pathways, you know. So how did you do that?

SPEAKER_01 15:40

How did you and that was to take in determination as well to go, no, I want a career within sport. So how did you then do that with these setbacks that you have?

SPEAKER_00 15:54

Okay, just a bit of um background before I got onto the uh the the pathway of sport that I'm on now. Uh, I did some youth work before I went to uni in 2013. I think I was 30 when I when I went originally, and I was doing some youth work just before. And I I'd always in the back of my mind gone, I'd I'd love to do a degree because I'd seen my mates do degrees and doing really well and you know loving life and that type of thing. And I thought I'd love to have a go at that if if I can. And obviously, I knew about the uh mature student route, and I thought, well, I'm old enough now because I turned 30, and I thought, I'm just gonna apply to the University of South Wales, and I thought I'm never gonna I'm never gonna get in, but I'm gonna apply anyway, right? And and I was fortunate enough. Uh I found out that there was a uh a branch of the University of South Wales, a Mirtha College, which is fairly local to me. Okay. So I did my uh business uh diploma there. It was bloody, I forgot the name of you know. Uh there was a two-year uh diploma, and then I ended up doing the top-up then to get my full degree, but I'd done it in the College of Mirtha, you know.

SPEAKER_01 17:18

Was that a feeling of achievement having not been able to go to uni in the years previous to that?

SPEAKER_00 17:25

Uh yeah, massively, because I I'd I'd always wanted to do it secretly. I'd always I'd always fancied having a go because I as a child and stuff, I I loved learning, I loved learning new stuff. I I was always curious, I wanted to know things, and I I don't think I've ever really changed. So for me to want to get on to the course in in the beginning was an achievement, but but then to complete it three years later, I've it's one of the best things that I ever did, and it and it opened a lot of doors for me then, you know. And then like I'm gonna go back to my question, yeah.

SPEAKER_01 18:04

Like, I'm gonna go back a little bit. Like, so with with the youth work you were doing, like you were supporting young people, supporting disabled young people. Like, how did your own lived experience of having CP feed into that? And did that help you in the job that you were doing?

SPEAKER_00 18:25

Yeah, it would it was it wasn't uh uh disability-specific uh youth week, it was just a youth club that was fairly local to me. Okay. So that they were just uh just children uh living locally, you know, on the local estates and stuff. So there wasn't not I can remember, I can't remember a child with a disability there, interestingly, but uh yeah, it was just in a uh local youth center. I started volunteering in a place called Phasythia Youth Center, it's not there anymore, sadly, but I started volunteering there and it just went from there and then I progressed to uni then. But those I think I think what was interesting was I was the only one adult there with a disability or at least a visible disability anyway.

SPEAKER_01 19:13

Yeah, and me when I was little, I never saw any adults with CPE. I never saw that. So did you feel that you were a bit of a role model, maybe, for the young people that you were working with? Did you try to be that?

SPEAKER_00 19:30

Um no, it really it wasn't something that I particularly uh thought about, really. I just I just wanted to go in and to try and do a good job. I just I just wanted to just go in with these young people. A lot of these young people uh came from like disadvantaged backgrounds, um parents out of work, maybe family with drug issues, depression, uh drink problems, whatever. And I purely I I just wanted to go in and try and do a good job while I was there. Yeah, that's all I thought about really.

SPEAKER_01 20:11

Did you feel that you made the difference that you had a positive impact on the other?

SPEAKER_00 20:17

Well, I hope so, yeah. I I hope so. Like I said, I always wanted to do a good job, and I tell you what was interesting about it, as I mentioned, I was the only one with a physical disability in the uh in the whole building, really. And uh some of the children, as I was new there, were quite weary of it and didn't know how to approach it. But by the end, a lot of these children, because we got to know each other, a lot of these children would come across, they would ask me questions, what we got, how did it happen? Yeah, just things like does it hurt? You know, the things you expect children to to ask you. And and to be fair, once you sit, once I sat down with uh these children or these young people, once I explained that about my disability, how it affects me, answered the questions they had, they were they were pretty open and they were pretty cool about Dino. I was just one of them then.

SPEAKER_01 21:19

I think kids are better understanding it, comprehending it, and getting on with it than most adults are sometimes. I was like, like I I think parents are sometimes a bit worried for their kids to ask any questions. But for me, I know people are different, but I don't mind talking about it. I don't mind saying, oh, this is what it is. I think then that helps the child understand, oh, this is what it is, it's nothing to be scared of, just opening that conversation up early on.

SPEAKER_00 21:52

Yeah, of course. And I I've definitely experienced that myself. I got an example, I was on holiday uh a couple Years ago in uh Egypt, I was at the time, and I was in the swimming pool. See, like a swimmer bar, I can't swim, but I just walked to this bar and I sat on the stool in this stool. And there was a group of British people that we got friendly with. So there's like a group of us on in this pool, and obviously there was children there, and there was this one boy, but he he'd only ever see me in the pool, so he'd never actually see me walk or anything like that. Well, one day I was out to the pool walking around the hotel, and he goes, All right, sir. I said, Yeah, you okay, bud? And he goes, What's the matter with your leg, eh? Mate, simply like that. And uh, and there was no malice in it. It was like no exact way, he just genuinely wanted to know. So I just goes, Ah, it's just it's just a pause, that's all, but it just makes just makes my uh leg go a bit funny. That's all I said to him.

SPEAKER_01 22:57

And that was the perfect way to do it, I think, in a light-hearted way, so that they understand and don't feel bad about it, I think.

SPEAKER_00 23:05

Yeah, yeah, that's cool. And and once I once I explained to him those simple things, I said, Oh, it just makes my leg go a bit funny, that's all. I just walk a bit slower than you do. And he went, he went, that's cool, though, and that was it.

SPEAKER_01 23:18

Easy, simple as like, oh, that's that's a really lovely story, Ricky. Thanks for sharing that. Yeah, no worries. I I want to talk about football because you played disability football competitively. Like, who did you play for? Like, what was that experience like when you were younger? Because you had some pretty big achievements in in disability football.

SPEAKER_00 23:44

Yeah, yeah. I I played uh for uh Newport uh Dragons, I did. Right, yeah, and they they were at the time were the closest, I know there's a few more locally now, but they were the closest disability team available to me at the time.

SPEAKER_01 24:02

So, how did you find the Newport Dragons? How did you get involved with them? How old were you? When did that stuff?

SPEAKER_00 24:10

Well, I I was I was always an active child, okay. I played many sports with my mates, just recreationally and things like that as well. So I played tennis, we do, we'd write about the streets, football, rugby, anything, we'd play anything, right? But as I got a little bit older, probably into my early 20s, I realized that my mates were too big and too strong for me at that point. They matured into men, strong men, and and local football, uh, able body football anyway, was too was too much of a risk for me to play. So I realized for me to continue to play then, I would have to play disability football. And that's that's where I went uh to the Newport and Dragons then. And uh I had I had a couple of seasons down there with them, and that was that was brilliant. That was we put we was and we was an excellent team. It was pan disability, it was so it was uh physical disabilities and uh mental disabilities as well in one team, you know.

SPEAKER_01 25:20

And like uh was it small-sided games, was it um what was for people who don't know how did it work, was uh league, what was the kind of format of it?

SPEAKER_00 25:33

Okay, well, we we didn't we didn't play so much in a league, it was it was more competition-based, it was so we you'd have football festivals, so that there may be four or four or five teams or eight teams in in one day, and you could play small-sided games, you could play like five sides if you were playing a number of games. Uh, eight to side would be the norm that we would play. But now and again, we'd have we'd have friendlies where it'd be full pitch and leaven aside as well. But eight to side would be the norm mostly and smaller, smaller pitches. What position did you play? Well, I used to think of myself, I used to think of myself as a bit of a forward, but I ended I ended up back in midfield because I soon realized that with a pan disability, some of these guys with um mental disabilities uh with very low physical limitations, they would be the forward players or the wingers or the flyers. It'd be my job then just to get the ball through the gaps and give them the ball, you know.

SPEAKER_01 26:37

How did you like when you came up against people who maybe were learning disable but were very physically strong and quick? How did you like adapt your game to deal with that?

SPEAKER_00 26:49

Yeah, it was more for me about using my football intelligence so that I learned along the way. So it could be little things like uh not getting too close, making sure my distances were correct, making sure my first touch was good, making sure my body was facing the right way, making sure uh that my head was on a swivel so that I knew my surroundings and those types of things helped me along the way, you know. Absolutely, and like you did.

SPEAKER_01 27:20

I think we've had a conversation before about this. Didn't you have a trial for the Welsh side?

SPEAKER_00 27:27

Yeah, I I I did indeed a Welsh development team which was in Cardiff, uh, which was a very good and enjoyable thing, but at that time there was a a bad time in my life because I was 15 and I I just lost um both my grandparents around that time. Oh right. So then I didn't really pursue it because I I went into because I was very close to my grandparents. They they were as I said previously, their house was like the central hub. I was always there. I loved it dealing. When I lost them, I went into a bit of um bit of depression, maybe and I I didn't pursue it as much as I as I should have done, really.

SPEAKER_01 28:10

Do you do you think that like certainly I know when I've had bad times and I felt low, like sport and physical activity really helped me get out of that and switch on to something else that helped you when you've gone through maybe bad times or feelings of negativity?

SPEAKER_00 28:33

Yeah, yes, definitely, definitely. I say to my uh partner now, I've been in a relationship with almost four years, and I say to my partner now, in my early 20s, when I didn't have a lot going on in life, and I was, I didn't know at the time that I was depressed, I just thought I was physically ill because of the manifestation of the depression uh manifested itself in what I thought was physical illness. I thought I was physically ill, and I remember going through a depression in my early to mid 20s, and I thought, right, one day I've got to sort this out. And how it started for me was uh joining the gym. And I I joined the gym, and slowly but surely I started to get fitter, I started to get stronger, I started to feel better about myself, people started to notice, I started getting more confident, and all those things rolled into what it became, and I started to pull myself out. So I I do believe that uh sport and physical fitness can help a hell of a lot for anybody.

SPEAKER_01 29:46

I really believe that, and I've since like we both play tennis together, since I've been playing tennis with Tony, my mental health has improved dramatically, and being active, being with people who get it, like really helped me. So I'm really glad that it's the same case with you as well.

SPEAKER_00 30:08

Definitely, and as you say, with it with the tennis, uh, it helps. Like I knew I knew nobody going into the tennis club, but being around a supportive group of people who are similar to you and got similar experiences to you, who you can chat with on a level definitely helps, yeah.

SPEAKER_01 30:28

And like even on the subject of sport, like you've also represented Wales internationally in darts. So, how did you set up playing darts? Where did that come from? And how did you get picked to represent Wales?

SPEAKER_00 30:44

Okay, well, darts for me in my family was massive, okay. Like I had my grandparent was a good dart player, my uncle was a very good dart player. Even my mother can throw a dart, right? We we've got we've got a family who've played darts internationally and things like that in the past. So dart has always been big in my family, but I I was never I I didn't mind watching it, but I was never a huge fan, really. Right, and uh one day my mate found something online called um the British Disability Dance Association, the BDDA, and he said, he said, oh Ricky said, I found this, he said, you fancy a crack go on. And I and I thought, I thought, oh yeah, let's let's go and have a go. It looked like a bit of a jolly, you know, a bit of a weekend away. Yeah, yeah, yeah. A couple of beers, throw a couple of darts. And I I never I never really took it seriously. And I I got there and um I realized that this was a serious thing with some excellent players who just happened to have disabilities, you know.

SPEAKER_01 31:48

Yeah, and I were you a bit like, oh, what have I walked into here? I haven't tried for this.

SPEAKER_00 31:55

Definitely some of the players there are disability or not disability, are outstanding players, regardless, right? And I walked in and I thought, Jesus Christ, these guys are gonna batter me out. And um, so I thought, right, I better up my game, yeah. I started practicing in between tournaments, which I never did. Just I was just a fun player, I just played for fun and win or loss. I win ball at it, but I started to practice and I started to get a little bit better and a little bit more confident. These players who were hammering me before, suddenly I'm holding my own, suddenly I'm winning a league or winning two, and I'm winning a match, and I'm winning another one, and I it starts to snowball from there, and and then and then ultimately then it be it became I was I was doing okay, you know, and uh one of the Welsh selectors just emailed me or rang me or something and said, uh do you fancy joining us in a four-man team for for Wales?

SPEAKER_01 33:01

Wow. So what was that like like uh combinations or World Cup? What was the competition uh the the competition there?

SPEAKER_00 33:11

I think the first one this was during COVID time, so in the end, we we didn't go, but there was one of the there was a competition abroad, and then I think there was talk of a home international as there was, but it was during COVID then. See, so we we end we ended up with we didn't go. So what we did in the lockdown, we used to play online tournaments, so we play them over uh zoom or anything like that. Any of these um video platforms is there a steam or something? I think we used to use is something called Steam.

SPEAKER_01 33:47

Steam, yeah. So how uh how would um how would that work then? So you would have a dark board in your house and like so like how would it how did it work on on Steam or Zoom?

SPEAKER_00 34:04

It was fantastic, it was it was locked down times it was, and what it was as as you said there, I'd have a board in my house with a camera facing the board, and my opponent would do the same, and then you'd have you'd have another guy then uh would referee. Oh wow, and uh we we would um play each other online, you know, and I was fortunate enough to play for a Celtic Nations team against uh England. Oh wow! Yeah, we picked to do that as a as a bit of fun, like and uh yeah, that was fantastic. And uh I I lost mine, so I'm not happy about that. Do you still play? Uh no. When lockdown finished, I I stopped playing altogether.

SPEAKER_01 34:59

Wow, is it?

SPEAKER_00 35:00

Well do you think you might pick it back up at some point? Well, I'm I I still got I still got made to know say oh come on, come and have a game, come and brisk. But uh, I I don't know. I'm I'm love I'm loving my tennis, I want to pursue the tennis idea.

SPEAKER_01 35:16

I and uh it's really a great community, the tennis club, isn't it? Everyone, you know, you do know you else well, moving the chair. Like for people who maybe don't know you, you're not a wheelchair user, you don't use your chair day today, but you play tennis in a wheelchair. That must be a new challenge as well, trying to work all that out and the movements and stuff.

SPEAKER_00 35:40

Yeah, definitely. Well, recently in the last uh six months, I have bought my own uh wheelchair for use outside the house, but I don't use it in house day-to-day. But yeah, as you say, the the challenge of moving that chair and moving it in the right way and moving it efficiently is a cool different ball game. Cool different ballgame.

SPEAKER_01 36:04

I was gonna ask you about something you might just touch down. Like, have you noticed any change in your CP as as you've got older? And how has that maybe affecting you?

SPEAKER_00 36:16

Oh, definitely as a great question, actually. Uh definitely, because when I was younger, I was very active, I was fit, I could run, jump, didn't really feel any pain, uh, never got tired. I think it was all the sport, and like uh all the activities I used to get up to up to when I was young, you know, I was fairly able, you know, fairly high functioning. But but as I've got older, there's there's death I'm 42 now, 43 in July. I've definitely seen a slowdown in my body and how my body reacts. Like, for example, I get tired now. Uh I like I said, I use a wheelchair outside, which I never have done before for like longer periods and things like that. Um, I get a lot of pain. My pain uh I suffer through the day is a lot higher than what it used to be. Uh, I get tired very quickly.

SPEAKER_01 37:15

Do you do you think there needs to be more availability for stuff like physio and treatment for adults with CPA?

SPEAKER_00 37:26

Great question. I was talking about this uh in particular the other night. And in my own experience, when I was uh before I was 16, so pre-16, okay, from the age of about probably about well, from when I was born to to until I was 16, there was a lot of help. I had hydrotherapy, physio sessions, I'd have physio to the house. And then when I turned 16, all that was uh thrown away. Well, not thrown away, but taken away. It went from it went from maybe a weekly session or a twice monthly session and a hydrotherapy session to nothing. Now, as an adult, my experience is is uh there is still physios out there available on the NHS, but uh we need to find those ourselves, and that's always fun for me. Where I've needed it, I've had to go and find it. So I'd go through a GP or health professional who would then refer me on to a physio.

SPEAKER_01 38:35

But that's a lot of work for you to do yourself. And do you find with some physios, like if they don't see an improvement, if it's just maintenance stuff, they maybe don't want to treat you or don't want to like engage with or they don't know how to treat adults with CP.

SPEAKER_00 38:54

Yeah, well I I I've I've had varying I've had uh varying experiences on that. I've had some who are really good, and when I talk to them, they take it on board and they're willing to learn and listen. And then I've had others who've just gone where I've gone, for example, I'm suffering from this, that, the other, and they just go, ah yeah, that's just your CP, that is. And I go, no, this is something that's new. This isn't my CP. This is something, but they some are too ready to uh write it off as my CP.

SPEAKER_01 39:33

Yeah, I understand. And that must be so frustrating. So I think uh definitely more research, more services for adults with CP, and you know, any additional physio, like it's a lifelong condition, and I don't think it's recognized as that. Yeah, uh, I want to talk about what you're doing now, your job, your um you're working in sports development alongside Murph Council. So what what does your role involve?

SPEAKER_00 40:11

Um, my my role, um, I I do apologize, but I think I've only got uh less than 10% on my uh tablet. But um, yeah, I'm working alongside Mirtha Council and RCT now as a referrals officer. And um my role is to help facilitate opportunities for disabled people in those areas, get involved and active in sport.

SPEAKER_01 40:35

So, how how do you do that? And like have you created opportunities for people?

SPEAKER_00 40:41

Yeah, um, so in in my role, I'm uh I'm almost customer-facing. I work from home, uh it's only part-time, it is, but in my role, I uh I'm the one that is the bridge between the clubs, uh, St. Disney activities and the families. So I would be I would be the one to make the uh phone calls to the families, uh, provide information via the sports development department, and then set them up with potentially suitable opportunities then. So it could be someone who's interested in uh football, and we we send them then to the local uh disability football team if we have one in that area, you know.

SPEAKER_01 41:29

And like if there are people listening or watching this that want to get involved in sport that uh living in the Murthur area, how do they do that? How do they get in touch with you?

SPEAKER_00 41:41

Well, there's a there's a number of ways in contact. That's they can contact uh the Murder Council. There's uh uh a website available online and there's links for disability sport there, or they can message me via my email uh RickySnedden DSM at hold on, it's RickySneddenTSM at gmail.com.

SPEAKER_01 42:02

Fantastic. I'll ask you to put that in the chat at the end of this call, and I'll put it in the description of the podcast when it goes out. Last question for you, Ricky, before your tablet dies. What is it one thing that you wish people knew about cyberpulsy?

SPEAKER_00 42:23

That the I wish that uh great question. No two cases are the same, and it is just a physical manifestation of a brain injury, and intellectually we are as able as anybody else. So give us that respect. That that'd be the one thing that I wish people would know.

SPEAKER_01 42:45

Because for me, like so many people, because of my speech, they talk to me as if like I don't have that understanding, and it gets so frustrating, and you see it as well with Adam, who plays down this. Like, if you take take the time to talk to us, we can have a conversation with you and just talk to us like normal people.

SPEAKER_00 43:08

Yeah, yeah, that that's right. I I remember having an experience of that as a child where uh someone was asking my mother through me whether I enjoyed school and I stood there, yeah, and my mother just went asking me stood with that and talk.

SPEAKER_01 43:25

Yeah, it's changing, but hopefully, this podcast will help show people there are some really cool people in CPA do really cool thing. Just the same as anybody else, and that's what I want to achieve with it, really. But thank you so much for your time today, Ricky. It's been lovely talking to you.

SPEAKER_00 43:45

No, cheers, but thank you for having me on. I'd really enjoyed it.

SPEAKER_01 43:47

Cheers, but thank you so much, and please stay tuned for the next episode of the Falsey Podcast, where I'll be talking to actor Lizzie Anis. Also coming up is Theatre Director John Wilkinson. So please like, share, subscribe on all podcast platforms, YouTube, Spotify, Apple Podcasts. And if you've got any questions, please send them over. I'd love to ask them to some of my future guests. So these are going off every day in March. So I'll see you on the next episode. But for now, it's goodbye from me and goodbye from Nicky. Goodbye. Thank you for listening to this episode of the Palsy Podcast with me, Kieran Fitzgerald. I want to thank my guests for joining me and I hope that you'll stay tuned for the next episode and more throughout March. Thank you.