The Palsy Podcast - Episode 20 - Mary-Elaine McCavert

Ciaran is joined on Episode 20 of The Palsy Podcast by Mary-Elaine McCavert. Mary-Elaine talks about her experience growing up with Cerebral Palsy and her route in Psychology. Mary-Elaine is currently studying a PhD looking at sleep in people with Cerebral Palsy, and how she has worked with families to gather that research. 

Sleep resources for families

Mary-Elaine’s research paper

Adults with Cerebral Palsy in Northern Ireland Group

Transcript

SPEAKER_01 0:01

Hello and welcome to the Palsy Podcast with me here in the show. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as Marky is Silver Palsy awareness to market, I've decided to interview interesting people who have Silver Pulsy 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 the Palsy Podcast. It's me, Kieran Fitzgerald. Welcome to episode 20. We're over halfway through the month, and I really enjoyed having such interesting conversations with a variety of different interesting people who have cyber palsy marking cyber palsy awareness month, which is in March. And it's been really cool to connect with people who I know, who I'm friends with, learning their experience, but also people who I don't know, who've connected uh through social media, one of whom I'm joined by today. I'd like to introduce you to Mary Elaine McCallett. Hi Mary Elaine, how are you doing?

SPEAKER_00 1:30

Hello, Kieran. I'm doing good. Thank you so much for having me today. I'm delighted to be here.

SPEAKER_01 1:35

Thank you so much for joining me. I'm really looking forward to finding out more about you and your work and your experiences. So, first day, I'm going to kick off with what I've started all the things with. And what was your experience growing up with CP?

SPEAKER_00 1:52

Yeah, I was thinking about this, and it was to be honest, I feel so lucky because I feel that I had such a lovely childhood. I was really surrounded by almost like cheerleaders and people who were protecting me and looking out for me. And um, I was thinking about, you know, when did I start to feel different or feel disabled or those things. And I think for me, it wasn't just like one moment, but it was almost like a series of moments that like accumulated, and then I was like, oh, hold on a wee second. Like I'm not like they are, you know. So there was like, I suppose I remember when I was away, I was asking my friends, what does it feel like to walk? And understandably, they could never answer, you know, they were shrugging or they were like, I don't know. And I suppose I was just so curious because I really wanted to know. Um, and I'm still waiting for the answer for that to this day. Okay, I still haven't gotten it. Um so but yeah.

SPEAKER_01 2:55

It might be worth asking at this point if you don't mind sharing. How did your CP affecting?

SPEAKER_00 3:02

Oh, sure. That would have been obvious to start with that one, wouldn't it? Um, so yeah, I have spastic quadriplagic CP, which for people who don't know, maybe that are listening, that just means that most of my limbs don't like to do what I asked them to do. So uh they just like to be really tight. It means that I use a powered wheelchair to get around to do everything in. I absolutely adore it. I wouldn't be able to live life without it. Um, so um, but yeah, so that's what that means for me, really. So growing up, I suppose that meant weekly physio with the absolutely amazing Liz. Um, she was almost like a a part of the family to be honest, we saw her that much. Um, she also sneakily kept me on until I was 19, so well done Liz.

SPEAKER_02 3:47

Oh well done.

SPEAKER_00 3:48

Yeah, so um, and I yeah, it was just kind of a lot of mobility aids, a lot of wheelchairs. This gigantic buggy, this like blue buggy that they kept me in until I was like eight or nine. I was like, guys, can we not, please? Can I get on?

SPEAKER_01 4:06

Was it one of those, yeah, four small wheels and big blue canvas? Yeah, I think I had one of those.

SPEAKER_00 4:13

Oh, did you have one of those too? Yeah, it was an interesting choice, practical for the parents, so that's good, but not very dignified for the person in it, I thought. Um, yeah.

SPEAKER_01 4:27

And so what was school like? What was your experience at school?

SPEAKER_00 4:31

Uh school, so primary school, um, again, it was it was really good. Funny, I was I smiling to myself when I'm listening to these episodes, Karen, because I think there's a run-in theme of P. And I I really struggled with PA. And I remember, you know, they were kind of saying, like, um, you know, like give it a go. And I'd be like, this is my go. Like, this is me going, you know. Uh, I really struggled with that, and it it very much does make you kind of sit in the sidelines a wee bit and be like, oh, okay, that's not for me. Um, and I suppose I didn't have the confidence at the time to be like, can we try this? Can we do this? Um, and so I suppose that was the sort of isolating thing in primary school. Then going to um secondary school, grammar school, I had just got my powered wheelchair. It was for that purpose because you know the way you move between classes. Yeah, and they were like, Marilyn, you're not gonna be able to do that. So um so got my powered chair, and the school that I wanted to go that my sister was at didn't have a lift. Um, so I thought I was gonna have to go to the other. There's not a lot of choice. I'm from a wee place in Northern Ireland called Oma. Um and so there wasn't a lot of schooling choices. There's also suppose the religious dynamic in Northern Ireland where uh um we like to make things harder for ourselves over here.

SPEAKER_01 6:01

Um so um I I I don't really want to get involved in that because we can be there all day.

SPEAKER_00 6:08

Absolutely. It is I love it here. We're like we're wonderful, but yeah, um uh but so it just meant that school choices were interesting. So, but the school agreed to put a lift in for me, which was lovely. So then went to school, uh kind of got through that okay. I mean, I think I started noticing fatigue the older I got, and then the main challenges for me really were in uni, but I know we're gonna chat about that in a wee bit.

SPEAKER_01 6:35

Did you have a good level of support in school?

SPEAKER_00 6:38

Yes, I had a classroom assistant the whole way through school, Karen, um, and they were all wonderful, they were just lovely. Um, I don't think I would have got through school without them. I also have um dystonia in my right hand. So my right hand is is my hand is the limb that behaves itself most. Um, but if I overuse it, it lets me know. So it'll just shake and be quite sad. Um so it means that writing is not my forte. Uh so instead, so I'm a good typer, so I'll type away. Um and kind of so I got this like I think someone else was talking about this really weird laptop thing that you got. So I got that too.

SPEAKER_01 7:20

Yeah, yeah. Maybe you mentioned a bit about what that was.

SPEAKER_00 7:26

So it was just it was just like the most basic, you know, when you think of like your original mobile phone, that block with snake on it, like it was like that, but in laptop form.

SPEAKER_02 7:37

That's interesting.

SPEAKER_00 7:38

Yeah, so I I I loved it, but uh yeah, uh it just meant I could get through school a bit easier. Um, but yeah, no, all in all, I like I'm incredibly grateful for my schooling and my education. And I think um whenever you have a disability, you maybe doors aren't always open for you. And I think I wouldn't have had the doors open for me if it wasn't for the education that I've been able to have, and I wouldn't have been able to have all that if it wasn't for the systems that were in place, but also my absolutely awesome family and and friends.

SPEAKER_01 8:17

I think it's so important to have that support network and to have supported parents who say we'll support you to do what you want to do and work out with doing it, and you uh wanted you went to university. Did was it psychology that you studied at university?

SPEAKER_00 8:36

Yeah, so I originally I I come from quite a medical family. Um so like dad's GP, mom's a nurse, and I was like, I want to do that, I want to do medicine, and then when I looked into the practicalities of medicine, I was like, that's not a world that's necessarily going to be built for me. So I was like, right, what's like the next best thing? Um and I find psychology and I also um was supposed to give a bit of context whenever I was like 16, 17, 15, 16, 17 around then. I think like that stage whenever like you realize you're I don't know, you've hormones and you're trying to get boyfriends and you're trying to date and you're trying to do all that crack. And I find that really tricky. So I went to CAMS, CAMS as a child and adolescent mental health services, and I had the most wonderful nurse there who really helped me kind of be appreciate my identity as a disabled person and not have this like weed voice of like she and I'm worried or like you're not good enough, you know. Um, and so I think that was massive for me. I was like, well, if she can do that for me, I want to do that for other people.

SPEAKER_01 9:52

Um so that it's fantastic to hear that you had a good experience. Oh, I didn't good mental health support when you need it, because I think so many people don't have that. So that must have been good for you to have someone who you felt understood what you were experiencing at that time.

SPEAKER_00 10:13

I I know what breaks my heart to be honest when I hear about some people's experiences because I mean I think it's it's quite well established now that if you have a disability and um particularly there's specific research into CP um and the impact on mental health for people with CP. I mean, it could be better in adulthood, not gonna like hearing we could be improving things there.

SPEAKER_02 10:32

I agree.

SPEAKER_00 10:33

Um but as um as a teenager, I honestly she was called Orla, and she was just the sweetest person. So um, yeah, she is one of my main motivators for getting into psychology. And I I uh went to a uni um in Northern Ireland, and it was the uni was great. Uh the people on the uni were great where the accessible accommodation was, it might be different now, like I'm sure made here, Karen could have changed, hopefully has changed, but where the accessible accommodation was, it was kind of out in its own. So I didn't really have opportunities. You know, when you go, you're like that new student and you want to make friends and fit in and like have your re um like quad of people around you and your requad. Um, and so I didn't get to do that. So I stuck it out until December, and then I get hame home at Christmas, and I was back to my friends, and I was like, I can't go back and be on my own, it was too lonely. Um so I left and I ended up reapplying to a different G. And thankfully um it was couldn't have been better. Like it was just wonderful.

SPEAKER_01 11:45

And what was the difference? Did they have more accessible accommodation? Were they more willing to listen to you?

SPEAKER_00 11:54

Like it was almost like in in the first G the accommodation was brilliant, like but it just it was almost like you have access to the building, but you don't have access to the experience of uni life.

SPEAKER_01 12:07

I get what you mean.

SPEAKER_00 12:08

Um whereas the other uni, um I was very much on the ball then. I think you become a you become a sort of accidental advocate, don't you?

SPEAKER_01 12:20

I think so. But I think sadly that comes from experiencing discrimination and almost sometimes expecting discrimination.

unknown 12:30

Yeah.

SPEAKER_01 12:31

Like I don't know if you feel the same, but when you maybe go in to a new place or trying something new or going even going to the cinema, going to a restaurant, going out your you almost expect there to be access barriers, and you think, oh like, what am I gonna have to do to make this accessible?

SPEAKER_00 12:49

Yeah, you brace yourself for it, don't you?

SPEAKER_01 12:52

Yeah.

SPEAKER_00 12:52

You're like, what's it gonna be today? Um, but yeah, uh, but no, all in all, you know, it was fab, and then I turned into the eternal student apparently, Karen.

SPEAKER_01 13:03

So was that always the aim? Did you want to do a master's and PhD?

SPEAKER_00 13:08

Was that um well I went, so I finished my psychology degree. Then I will say getting a job was a mind filled. Um I kind of I suppose I in my early years it was like almost I was kind of performing non-disabled, like which sounds bizarre when you're a wheelchair user because it's right there. But I almost I would do everything I could to be accepted and to be seen as non-disabled. Then when I got older and I went to uni, I very much realized, you know, my wheelchair enters the room before I do, people see it before I speak. So you um it's just something you very much get good at reading rooms and reading circumstances and putting other people's comfort before your own, those kind of things.

SPEAKER_01 13:53

I don't want to be dispelling, but do you think people had assumptions about your intelligence because I'm just turning off the TV, it's decided to randomly turn on, sorry.

SPEAKER_00 14:05

Um yes, well, I think it's it I suppose it's always something I've wondered like, why is there such a fear around disability? Why do people think like that's not me? That'll never be me, even though I'm like, guys, you do know we're all aging, so just get ready, you know. Um and I just is it just because it just seems so far removed from their experience, or is it because you know our brains naturally try to put things into patterns and boxes? Yes. Um, is that what it is? Is it just a way of understanding? Um, is it that there's not enough wonderful diversity in our world or people aren't entering into those spaces where they see all the cool people and listening to podcasts like this? And um, and I still don't know what the answer is.

SPEAKER_01 14:58

I think it's something we're all trying to work out, but as well, like what I would say is it's not our job to educate. That's very true. And the amount of emotional labour that sometimes can take can be really detrimental to people, uh, physical health and mental health. But if you want to learn about people with so they know it affects people, listen to this podcast. But also, like I'm speaking as an individual, but as long as you start that conversation with the right intentions, willing to learn, not making assumptions, I'm happy to talk about what it means for me, but what I've learned over this is it affects everybody differently, and everyone's got a different live living experience. And um I want to talk about your PhD now, and I'm aware that this is not my ex area expertise, so please don't.

SPEAKER_00 16:02

No, if it's mine either, Karen.

SPEAKER_01 16:06

Um but yeah it it looks uh sorry, I'm gonna go back a little bit.

SPEAKER_00 16:12

So in terms of psychology, did you all did you always specifically want to focus on psychology in disabled people or well I knew I wanted to do mental health, and then the more I kind of started to try and understand my mental health, and and the more to be honest, it was when I met the disabled community, really, I have to say, and I saw we're so vastly different, but there's common threads, and I suppose within those common threads, it's the challenges with those societal bias and perceptions and assumptions and expectations and thinking you have to prove yourself and internalized stabilism and all those things that we're kind of living with, but maybe not talking about. Um, and I really noticed I I started um whenever my well basically started my PhD, it was very random. Saw this opportunity that came up to look at sleep and CP and I was like, do you I want to do this? Because at the time I was working as an assistant psychologist within autism services and I loved it. And it was such uh such a slob trying to get that job. So I was like, if I leave that job and I don't get this PhD, I'm screwed, really, you know. So I was like, right, I'll go for the interview, I'll see what happens and and go from there. Turns out the person that was interviewing me, the absolutely amazing Clara Kerr, she was the person when I was younger, she did my gate analysis. Oh, right. Yeah. So she knew me, but I'm right. So she knew me, but I didn't recognise her because I think so much happens when you're a kid. I honestly try to think of some of the memories as a child, and I don't know if it's like our brains and bodies trying to look after us, but it's like it can be really hard sometimes to think back and think of all the stuff that you faced. But anyway, went through this interview, was incredibly nervous, um, and tried my best, tried to show how passionate it was, realized through prep for that interview that CP wasn't just one thing, didn't know at that time it was multiple, it was an umbrella term for multiple um types of CP. Um, and then they rang me and they were like, We'd love you today, and I was like, ah! So I was delighted. Um, and I decided then to come out of my job with the autism service and spent five years because it was through COVID, so we had a daily bit of rejigging um for because when remember when cerebral palsy was on the shielding list for COVID? Oh yeah, what was that like during COVID?

SPEAKER_01 18:48

I suppose it was very, very much was it a scary experience? Did you feel them within yourself?

SPEAKER_00 18:56

Well, I at that time I was living in a in a city called Belfast, again, which I'm sure some of your listeners will know for other reasons. Um, and uh I was in Yule and I was loving it, and then it happened, and I had cares come in and out to give me a wee hand. Um, and then because CP was on the shielding list at that time, we all thought it'd be safer than I moved back home. Um so moved back home. I had done my ethics from a PhD that I would interview people face to face. Again, couldn't, so had to go through ethics again and change that to online interviews. Um, but do you know what? I'm actually so grateful for that time because I got so immersed in my PhD and I got so passionate about it. Like it becomes your I mean, I'm not a mummy, but it like it almost feels like it's your baby. Like you become so passionate about it. Um, and I really wanted to do my community proud. Like I really wanted to put this piece of research out there that wasn't just out there, you know, it was actually gonna make a difference. Um, so yeah, so five years later, basically went into it thinking that um people in I was looking specifically at kids in Northern Ireland and their sleep patterns and their family's sleep patterns, and I thought that it was gonna be with the kind of general uh literature that says one in five people a CP will have a sleep disturbance. Um, but my study, and obviously it's just a one-off study, so it's uh it's a suggestion, it's not a definite, um said that basically three-quarters of the kids that I spoke with and families that I spoke with, uh, kids were experiencing sleep disturbances, but obviously that meant their siblings and their parents were also having a sleep disturbance um to some degree. Um uh, but my favorite part of my study, don't know if you should have favorite parts, but I do um was when I actually got to interview the families.

SPEAKER_01 20:52

I want to ask you about that. So, first of all, going back to staff, how did you find these families? Like how did they choose to participate in this?

SPEAKER_00 21:02

And what was the process of interviewing them and I put out on social media I said, look, I'm really interested in um finding out about sleep and cerebral palsy. Would anybody be willing to complete this survey? And within the survey, I had a standardized questionnaire, which is a fancy way of saying a questionnaire that you can compare across other questionnaires. So you've almost got a baseline of things. Um, and so 112 families completed that questionnaire for me, and then from the results of that questionnaire, I was able to work out who would have a clinical level of sleep disturbance, and by clinical level I mean like a level of sleep disturbance that would benefit from input from someone. Um and so then from the people who from the 74% of people, 73% of people who had sleep disturbance, I asked them who would have. Anybody be willing to have a more in-depth chat with me? And I would love to speak with the child with CP themselves in whatever way works for them. So I offered that they could do a drawing of their nighttime or what they wanted their nighttime to be, or they could do written responses, or we could have just whatever was comfortable, whatever worked. I would also love to speak to their parent or guardian, and I'd love to speak to a sibling. And basically I had the most wonderful families uh agree. Um, and we had like their conversations I still remember in my head, you know, there's certain quotes, and um it broke my heart to be honest, because I didn't well, I wasn't aware that I was growing up with any sort of sleep disturbance. I now think of a thing called sleep paralysis, is which is where you wake up and you feel paralyzed essentially. Um so it kind of takes you a wee while to come around. Um but uh at the time I didn't have a lived experience of sleep and CP. Um so I was really conscious of just listening and then really having like I'm like you've graced me with your time and your stories. So I really wanted to make sure we do something about that. So then we'd um after my PhD, the wonderful families um basically formed a PPI group with me, which is a it's uh patient public involvement, which means that they alongside me, but it's very much theirs, um, helped me develop free resources for GP teams, for teachers, and for families themselves, because what we found was that a lot of families didn't actually know that they were experiencing a sleep disturbance.

SPEAKER_01 23:45

Oh, okay.

SPEAKER_00 23:47

Like they thought it was just part of CP or or um if they didn't have a sibling in the household, which a lot of the survey ones didn't, only interview ones did, but um, they didn't have that comparison, and also children with CP themselves, they were just like, Well, sure, I haven't known any any different, you know.

SPEAKER_01 24:06

Like you just think, oh, this is what it is for me. Is this not how everyone experienced it?

SPEAKER_00 24:13

Exactly. Um so uh, and then we just found out the the um the interviews basically told us that so many things impacted sleep. So that could be someone's environment, whether they needed to support changing position at night time, whether they had pain, uh, whether they um had like so sometimes it was home variable. So, say for example, a sibling shared the room with their sibling with the bee. You know, they're gonna be up at night when their siblings have been supported. Um, so many parents had to change their jobs and job setups to work around. So it was a real, a real challenge and not uh just kind of uh another thing to consider. It almost brought its own challenges as well, you know.

SPEAKER_01 25:01

Was there any correlation? I mean, severity is an objective tip, but was there any correlation? I hope you understand what I mean by this. Yeah, was there any correlation between the severity of the CP of the affected child and the disturbance of safe? Or did it vary depending on the family?

SPEAKER_00 25:24

You must know your stuff, Karen, because fascinatingly, um uh all the other research had said, you know, if you're GMFC level four or GMFC level five, which would mean that your body's more involved in your CP, um, then you're more likely to have sleep disturbances. But my study, now again, it was only 112 families, so it's not causation as such, um, but that wasn't a thing with my family, it was just challenging for them all. So um, but yeah, it was the most wonderful experience. I think I also then went into a whole like CP tunnel where I was like really trying to understand CP. Um so I learned stuff I didn't want to know, I learned stuff I was fascinated about, um uh and then that led me into the advocacy world. Um, and I I know I work with um uh in a charity for people with acquired brain injury. Um and yeah, so it's just just funny how life kind of works, works its ways, and doesn't it, isn't it?

SPEAKER_01 26:26

Yeah, and and what does your work with that charity involve? What's the name of the charity? Um what kind of work do you do?

SPEAKER_00 26:34

Uh yeah, so I work as uh the research and policy officer, so that's like um looking at policy development and things like that, and also uh research. Um and then I also am with a thing called a systemic practitioner, which is a fancy way of saying that I'll be qualified as a family therapist in December.

SPEAKER_01 26:54

Congratulations.

SPEAKER_00 26:56

Oh, thank you. I mean, it took me long enough, and this is why I've turned into the Eternal Student Care. But do you know I feel so grateful that I adore research, but I also adore being on the ground and actually getting in there and helping families. And I suppose what I noticed from my own experiences, and and I only ever talk about my own experiences, I don't I recognize other people's have their own unique ones, um, is that the support, I mean, we know the supports aren't great anyway, but particularly when it comes to mental health, a lot of the time um there's like the physical disability services, but other than that, if you can't get onto that and you can't get into the waiting list, you're kind of on your own. And as we know, you don't get a manual to handle uh lifelong disability and it throws stuff up at you all the time, you know. You're like, I you know, I thought I'd handled this like bit of feeling not good enough, or I thought I'd handled the trying to prove myself thing, but then in different contexts it shows up again. Um I suppose my ultimate aim is to stay within research, um, and specifically I'd love to go into more um CP-specific research, I suppose, and then also I hope to develop my own private practice for families that have a disabled family member.

SPEAKER_01 28:21

I think that would be so important because so many mental health professionals may be fantastic what they do, but haven't got an understanding of disability.

SPEAKER_00 28:32

Yeah, and I think as well, I very much want to do it from like a disability affirming approach. I think you know the way there can be those we narratives that oh my god, you're so inspirational, or oh my god, that's so tragic. And it's like I'm just living my life here, you know.

SPEAKER_01 28:50

Um that that you know, I I write for theatre, I write for television, and so many um like when we see TV shows or plays written about disabled people by writers who are not disabled, it's either tragedy or oh it's so informational.

SPEAKER_00 29:11

So have you done oh sorry, have you done any specific disability type projects? Thank you.

SPEAKER_01 29:17

I wrote a TV series last year. This is about you, but no, I don't know what I wrote a series last year for S4C, which is the Welsh language television station about disabled journalists uh working in Cardiff who has an affair in the office. So wasn't about a disability nice and to be disabled.

SPEAKER_00 29:42

Nice, it's that incidental kind of approach, but it's lovely.

SPEAKER_01 29:46

It's still available on YouTube with English English subtitles.

SPEAKER_00 29:50

Send it to me, please.

SPEAKER_01 29:52

I will do.

SPEAKER_00 29:53

I love what I read. Awesome.

SPEAKER_01 29:56

Um like so you mentioned a bit uh are we gonna see more papers on this? What are your kind of plans for next yeah?

SPEAKER_00 30:10

So I um I am hoping, fingers crossed, to do uh more research into the mental health side of things, it just depends on um kind of opportunities, but I'm hoping to knock a few doors. Um uh so I've got one paper out at the minute and waiting for one paper to be approved. Um and then I kind of hope I also um after my PhD, when I kind of was like, God, there's really nothing for us here, um, that made me feel really uncomfortable. And I was kind of like, what can I do? So I um basically set up a we private Facebook group in Northern Ireland for adults with CP. And we're a small Wii group, but we're a powerful Wii group. Um and I I'm really proud of us, and and I very much credit uh Karen Watson and Richard um from Scope and just for all their hard work because I almost feel like I'm on the back of their heels. You know, they're such incredible people in our community. I mean, I know you've spoken with Taya. If it wasn't for Taya, I think my pain levels would be off the chart. Do you know? Um Have you have you had sessions with yeah? So I I've been with her now for about, God, she'll correct me when she listens to this. I think it's two years. Um, and because whenever I turned 25, I don't know, my body just was not the same body. It was uh the pain levels I had, I'd never experienced that before. And I suppose I kind of thought, um, I don't want to live my life in this horrendous pain. And I remember reaching out to two absolutely lovely um healthcare professionals, but they were all like, we'd love to help you, but we don't know where to send you. And then it turned out that there was this place here um that specifically supports people with MS. Um come in there and we'll do what they described as an MOT. And I went in there and they were just saying that my tone was incredibly high. Um, do you know what I mean when I say tone?

SPEAKER_01 32:20

Yes, you're muffled.

SPEAKER_00 32:22

Yeah, yeah, good. And um, so they basically were like, Do you want a hospital bed? And I was like, No, I don't want a hospital bed. You know, at that time I was 25 and I was like, You can't really see me. Uh, you know, it's not very sexy. Do you know what I mean? If you want to try and get into it, it's it's another thing to think about, isn't it?

SPEAKER_02 32:42

Oh my goodness, yes, right.

SPEAKER_00 32:44

So, and it's hard enough. I mean, Dayton's a disabled person don't recommend. But so I kind of said to them, no, I'm not taking it, and they were like, just try it. So it's like, right, I'll take it for a month, take it for a month. And the difference it made, I very begrudgingly had to admit that my tone settled down, my neck particularly was a bit of a disaster. Thankfully, it settled. I have sense for your listeners who, in case they come up with the same scenario, now they're you have to save a bit, but there is like standard beds where one can kind of do its up and down and cool cooly things that you might need, and then the other half is just like your standard bed, so you don't have to fall into the trap of like a hospital bed if you don't want one, you know.

SPEAKER_01 33:29

Um are you able to share a link for that? Uh put it in the description.

SPEAKER_00 33:33

Oh, yeah, no bother. Um but uh yeah, so I just I think it really drew my attention to age and with CP and and the challenges that that that brings, you know.

SPEAKER_01 33:45

And what more do you think needs to be put in place to support adults with CPE as they go into their 30s, 40s, 50s, 60s?

SPEAKER_00 33:54

How long have you got? Um, I honestly on a really crude level, I think we need uh money support. I think we need um I think it was the up movement. Do you know the adult serval balls the up movement?

SPEAKER_01 34:12

Yes, yeah. I'm really hoping to talk to someone from the up movement before the end of the month.

SPEAKER_00 34:18

Yeah, Emma and Maria, who set that up, they're fab. But they basically have worked out that it would take the the UK government, it would be 42p a day um to give people physio. There's 130,000 adults with CP in the UK, um, and it would take 40p 42p, sorry, a day to give us physio. And I think that would be pretty cool, wouldn't it? It would. Yeah.

SPEAKER_01 34:42

So like for me, like uh from personally I noticed a decrease in my follow-up function about two years ago.

SPEAKER_02 34:54

Okay.

SPEAKER_01 34:54

Uh having to go to I'm lucky to be able to have private speech and anguish therapy, which would really help that. But if I wasn't in that privileged position, yeah, you know, would I still be on a decreased diet, you know? I think it's those things that people maybe are not aware of and people maybe think that we get that support.

SPEAKER_00 35:19

But yeah, I think people assume you are you get everything that you need to get, and you really don't. And you cut corners because you have to live your life, like you have to function regardless.

SPEAKER_02 35:30

Yeah.

SPEAKER_00 35:30

But it's I'm always thinking of, I wonder if I had that, would that mean that this would be look slightly different or be a wee bit easier, you know? And I'm always so passionate about making it easier for the people coming behind us, you know.

SPEAKER_01 35:44

Absolutely. And to not to be a role model necessarily, but I remember when I was little, I didn't know any adults with CP. So I don't know what it's like to be a child now, but maybe seeing people like us out there in our lives. Yeah, might give people.

SPEAKER_00 36:06

It's like it's not doom and gloom. Like some aspects are definitely you have to turn into like the queen or kings of problem solving, I think.

SPEAKER_02 36:16

I think so, yeah.

SPEAKER_00 36:18

But I mean it's it's like I adore my life and I I adore the perspectives it's given me, you know?

SPEAKER_01 36:26

That's a lovely, lovely, lovely thing. And like to finish, I want to ask you, you've already said so much. It's been so interesting and rich and worthwhile. But what is one thing that you wish people knew about cerebalsy?

SPEAKER_00 36:43

I I've been thinking about this. I kind of chuckled to myself, I suppose that one thing would be that we're not all jumpy, we just still have our star reflex. Um I jump all the time, and people are like, oh my god, just do it again. Um but no, on a serious note, I suppose I would like people to recognize that we have to live with the challenges that anybody has to face, but then there's extra stuff on top of that. So, as well as helping us raise awareness, help us take action, help us make change, be our allies, um, if they can, you know.

SPEAKER_01 37:22

Be good allies, support people, asking friends what they need.

SPEAKER_00 37:26

Yeah. And if you don't know, ask us, we'll tell you.

SPEAKER_01 37:30

Absolutely. Thank you so much. I've really enjoyed um, I've really enjoyed getting to know you find out a bit more about your work. So thank you for for your time today.

SPEAKER_00 37:42

Thank you, Kieran.

SPEAKER_01 37:43

And thank you for listening to this episode of the Fall Z podcast. Or if you're watching on YouTube, please uh like, subscribe, and share with people. Um I would love to have some of your questions to ask some of my future guests. So if there's anything that you've wanted to know about CP that I maybe haven't covered yet over the course of the series, please message me and let me know when I can discuss it with some of my future guests. Um I'll be releasing episodes every day in March uh tomorrow CP awareness. So please stay tuned for more throughout the month. Um I'm gonna be joined by Karen Watson from uh Scope on the next episode, so please uh stay tuned for that tomorrow. But for now, uh it's goodbye for me, and it's goodbye for everybody. 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 to the next episode and more throughout March. Thank you.