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  • Writer's picturePeta

Three Perspectives Of Living With Cerebral Palsy: Cerebral Palsy Support Network

Join Peta as she uncovers the invaluable work of the Cerebral Palsy Support Network (CPSN). Through heartfelt conversations with Natalie, Josh, and Amy, each with personal experiences of cerebral palsy, discover how CPSN provides crucial support, empowers independence, and breaks down barriers for those living with CP.


This special episode shines a light on CPSN's dedication to individuals and families navigating life with CP.


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Episode Transcript:


Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week is a very special episode and that is because this week on the 6th of October is World Cerebral Palsy Day. It might not surprise you, but for me, cerebral Palsy Day is every day. But I felt it was a really important opportunity to highlight a service that is working towards helping people with cerebral palsy live better without disabilities. The Cerebral Palsy Support Network is a fantastic organisation in this conversation with three of their employees, including Natalie, Josh and Amy. We talk about what the Cerebral Palsy Support Network does, but don't worry, it's not a dry episode at all. And that is because each of the individuals that I'm going to speak to have a lived experience of cerebral palsy. So Natalie and Josh both have cerebral palsy and work in the organisation. And Amy is a nurse who also works in the organisation and she herself is a mum of twins and they both have cerebral palsy. I'm going to hand over to Natalie first. Then I'm going to hand over to Josh, and then we're going to finish up with Amy. So without any further ado, let's hand over to Natalie.


Natalie [00:01:56] Hi, my name is Natalie Corrigan. I also have cerebral palsy and I work for CPSN as the media and communications officer. A lot of my role is in the comms section, but I produce a lot of the materials, I write a lot of articles. So we always try to put a lot of emphasis on articles that we think might appeal to our readers, things that make their life easier. I've got a podcast that's called CP Diaries that's been running for about a year and a half now, and we try to cover a lot of topical issues. In particular, we try to cover issues that I guess pertain to adults with cerebral palsy, because this was originally my brainchild and we found that at least I found and you might agree here, that when you're an adult with this, with cerebral palsy, it's like you've gotten forgotten.


Peta [00:02:50] I have to say what you said about being a child to an adult with cerebral palsy really resonates with me. I didn't really think about getting older in the context of having Cerebral Palsy. Until it happened, and it really hit me. And I don't know whether you have a similar experience, but it really hit me that there was a real shift, leaving the Royal Children's Hospital and not being under their care anymore, and it was such a shock. Yet all of a sudden you didn't have this sort of system behind. Well, I didn't have a system behind me to support my life with cerebral palsy in particular. I think that's why the Cerebral Palsy Support Network is really valuable. And I wish I had have known about it, particularly at that time of my life.


Natalie [00:03:41] Well, yeah. And I think like, you know, it's interesting because I obviously when you're young child, you're given the prognosis. You talk to your doctors and you my doctors were at the RCH. They were great. They were really upfront. They're like, look, this is a lifelong condition. You have to look after it. But I think when I what I remember was when I was a teenager, like, of course, knowing I would get older with it, but like pushing that to the back of my brain and not really thinking about the implications of what that would actually look like or what that meant because it was very anxiety inducing for me.


Peta [00:04:15] So if I contacted the Cerebral Palsy Support Network today, how could you and the team there help me?


Natalie [00:04:26] Well, there are a myriad of services we provide, right? So we provide a lot of really standard NDIS services. So support coordination, support workers. We've just started a new Your Choices program, which is basically giving members a lot of flexibility to choose their own support workers and, you know, having a lot more care around nursing, you know, qualified sort of skilled people in their homes. But the other thing we do is we do a lot of telehealth services as well, and we do a lot of member based services. So you might have a really basic inquiry like I want to connect with other people with cerebral palsy. We've got online support groups for that. But let's say, for example, going back to what we've been talking about, like you're 25 and you haven't done a lick of physio and you're feeling kind of stiff.


Peta [00:05:13] Or 33.


Natalie [00:05:15] Right. And so, for example, I might said, look, I'm going to connect you to our telehealth nurse, Amy, and she's going to sort of book an appointment with you and chat about your needs and we'll figure it out. And if there's a specialist out there who can help you, we will reach into our network and find that for you and connect it for you. So basically we like to think of ourselves as like a big old, spongy web that has all these resources available, like all these tentacles out there. And we get an OT here or a exercise physiologist there, psychology services. We just connected with an amazing psychologist. They provide webinars on occasion, you know, that really engage our clients and sort of cover more broad topics that they want to know about, like neurophysiology, for example. It's a wide gamut of services we provide.


Peta [00:06:11] Sounds really amazing and like, really reassuring because I don't know whether it's just my age, but there was a real they didn't seem to have to be much support with cerebral palsy as an adult when I became an adult. And I don't know whether that's your experience, Natalie, but often it felt like cerebral palsy, for lack of a better word, was like the poor versions of a person's disability. Like there were so many support networks for other disabilities, but cerebral palsy, from my experience, has always been left behind. So it's been great from a personal perspective to learn what an organisation like CP Support does.


Natalie [00:06:53] It's not just you like it's me to like when I first started working at CPSN and I was helping out in their member services department. We'd get calls from people and say, Oh, you know, I'm 32 and I just feel like I'm ageing or I feel like I don't have enough information about what it's going to look like prognosis wise. Like really for me, like what does that term wear and tear mean, you know, that term we would cerebral palsy here all the time. It's not degenerative, but there is some wear and tear. It's like, well, what does that mean? And you know, even me. What I was like, okay, let me see what I can find for you. When I'd go searching for them, I had trouble finding resources. It's like you try to type in CP specialist adults and nothing really comes up. And it shouldn't be like that, right? Because if anything, I mean reiterating the same point. Cerebral palsy hasn't gone anywhere and you still have it. And if anything, your needs are going to get more complex. If the prognosis is this wear and tear, thing. So yeah, I wholeheartedly agree.


Peta [00:07:59] Another thing I was really interested to see that the organisation does is the Innovative changes program, and I'll get you to explain it because I'm sure you'll explain it better than I will, but it's to do with getting the right support workers for you. And I've had really great support workers. I should say that first and foremost before I lean into the negative. But there have been some really detrimental experiences that I've had because of support workers. And as a result of that, I've decided to not have any. So I completely rely on myself. So yeah, if you could talk about the Choices program, I'd be really interested.


Natalie [00:08:42] You can hypothetically, if you've got a friend you know really well and you're like, you know what? They've got an ABN and they've got police checks and everything, I'd love to hire them as a support worker. You can do that. If you're looking for someone and you're a bit lost. We can also reach into our own list of available support workers and connect you with someone we think you'll click with and we take care of all the administrative stuff so that it's not as overwhelming for you or for your support worker. And then in addition to that, you'll have what's called the client liaison coordinator. It's basically in less fancy terms, it's someone who manages that relationship for you. So let's say it's not working out or you need to figure out or change some shifts and you don't have time. You can either self-manage that shit or you can say, Hey manager, look after that for me, I'm busy. I've got a podcast to do this afternoon. We are in the process of recruiting people with more nursing training. So if your needs are more medical based, more complex, you can have that degree of support because I think that's a big issue for people with disabilities, particularly if their disabilities are more severe. They want to feel like they're getting the right support in their homes, right? So I guess that's how I would explain the Your Choices program. I've been really lucky, but I have had my own cringeworthy experiences. But I remember I had one who was like an old woman, and she gave off massive mum vibes and she came over once and all. It funny. I was looking forward to having a really lazy day like often with my support workers, we'll go get coffee, will go out and do social activities, but sometimes it came like anyone else. Just depends what I'm doing. I might be busy with work, I might just want to chill in my Trackies right. And this is one of these days where I'd sort of been in my PJs. I was had my hair in a big mess and I was actually living for it, which is one of those days, you know what I mean? And the woman is like, Oh, let's get you out of the house. And I'm like a presumptuous and be actually livin for the couch today, so, with my cat. So no, thank you.


Peta [00:10:53] I keep thinking that things will improve and are improving because I'm so connected with the disability community online. So this seems to be well, from my experience, it seems to be a real disconnect with some support organisations and support workers, and I think that's where the CP support network is really great because you guys have cerebral palsy yourselves, a lot of you. So you get it. Like you just totally understand, which is just such a relief.


Natalie [00:11:27] And we have rich social lives. People will be glad to know on the weekends.


Peta [00:11:33] So going back to the fact that so many of you have cerebral palsy at the organisation, what have you learned about yourself and cerebral palsy in general since working with so many people with CP?


Natalie [00:11:46] It's a really good question because I like to consider that I was quite versed on cerebral palsy, but I guess the number one thing I've learned is the prevalence of mental health issues. I know that's a bit of a downer topic, but I think it's important to highlight because speaking for myself as a young person with cerebral palsy and I'm in a much better headspace now, I think because I've given myself permission to be okay with my disability as I've gotten older. But I was profoundly anxious and it was really taking hold of my life. And I remember at one point in my twenties thinking, Oh my God, I have to have cerebral palsy and anxiety. What are the odds? And it turns out, well, actually, the odds are quite high. You know, people in the cerebral palsy population and of course, it's not all of us, but we have higher incidence of depression, higher incidence of anxiety. I think there's even some studies out there and don't quote me exactly that you'll have to do your own research, but higher incidence of other mental health issues. And it's just a shame that a lot of people don't know that and they think they're going out alone because of physical disabilities and isolating enough, mental health sure is or sure can be. But second of all, if there was more awareness around that, we'd have more tailored mental health services. For example, we'll get a call from a mum and she'll say, I've got a 15 year old daughter with CP and she's so depressed about her disability and she's really anxious and she's not fitting in with her peers. Is there any psychologist out there who specialises in disability? And to date, we found one really good one. She's really, really, really good. And we've got her in our resource list. And if you want to know who she is, reach out to CPSN and we'll give you her name. But it's crazy. Only one for such a common issue.


Josh [00:13:38] Hi. My name's Josh. Daniel and I work for the Cerebral Palsy Support Network. As the customer experience officer, I have mild cerebral palsy.


Peta [00:13:51] It's lovely to have you here. Josh, As the listeners will know, this is a special about the Cerebral Palsy Support Network. So I want to talk to you about something that's very important to a lot of people with disabilities, first and foremost, and that's independence, choice and control. What does independence mean to you?


Josh [00:14:12] Independence to me, it really means having the freedom to like just be the person that you want to be and having the ability to make those choices for yourself. For example, when I have my lunch break, I'm like, Oh no, now I have to make lunch. I've got a half an hour lunch break. It takes me a long time to prepare that food, right? So I've been able to use my NDIS funding to put some funds towards the meal delivery service so I can just chuck a meal in the microwave and then just heat it up. And then I don't have to worry about using up my whole lunch break to make food. I can use that to just rest.


Peta [00:15:05] Living with a disability, as you know, often means that we're MacGyver's in our own way, because we've just spoken about how long it does take us to get things done. And sometimes we do have to make short cuts to allow us to become more independent. Like, for example, I can't really reach anything. If I drop something on the floor. So I'm constantly got a barbecue tong nearby to just quickly pick things up. Now, of course, people who are marketing barbecue tongs aren't thinking about girls with cerebral palsy in wheelchairs, but they've certainly been a big part of my life and my independence and a tip or hack that I recommend anybody listening. Is there a hack that you've developed that allows your independence that you're really proud of, Josh?


Josh [00:15:54] Yeah, so it's not really a hack that I've developed, but when when I'm just having my morning coffee or say, I just want a drink actually using a travel cup that has a lockable lid. So when I'm walking, I don't actually have to worry about tripping over and spilling all that liquid.


Peta [00:16:21] That's such a great idea. I can't believe I've never thought about that. I also know that you like me, love your Thermomix so I'd love to talk about your Thermomix, if that's okay. How has the Thermomix changed your life? Again, it's one of those devices that I'm sure marketers didn't really think about disabled people when they were developing it. But for me, it's really allowed me to love cooking for the first time.


Josh [00:16:49] Yes. Yes. It's so good. I do love my Thermomix and I've made a whole video on it saying why I love it. But yeah, it really lets me create meals that I've looked at and been like, That'll take too long. That'll take hours or so expensive. But with this Thermomix, I just put all the ingredients in, press a few buttons, stand nearby just to make sure nothing goes wrong. And boom, I've got a fantastic almost restaurant quality dish.


Peta [00:17:29] Does AI excite you? I feel like everybody's talking about AI at the moment. I'd love to hear what you think AI will be like and how it might be able to help disabled people.


Josh [00:17:43] So like I wasn't really understanding something in my NDIS plan and the appointments I had where I could talk to someone about it was like 6 to 8 weeks away. And I want to understand it now. I don't want to wait. So I just put the question I had into chatGPT and pretty much worked it out for me so then I can rock up to my appointment informed and say, Hey, is this correct?


Peta [00:18:19] And that just is another thing that I'm sure the developers didn't think or might have thought a little bit about people with disabilities, But it's just been such a powerful tool for me in my work and it sounds like a really powerful tool for you as well. Going back to CPSN. And I'd really love to hear whether you have a story about how the organisation has positively impacted someone with cerebral palsy.


Josh [00:18:48] The reason I love when callers, call into CPSN. with an inquiry is they're not just talking to some admin staff on the other end of the phone. They're actually talking to either me or my team who have cerebral palsy. That has enabled us to really maybe go deeper in the conversation and not be as surface level as maybe some of the other conversations that they may have had. Sometimes when especially new parents ring in and their baby has just been diagnosed with cerebral palsy, they don't really know what to expect. And there's still, unfortunately, a stigma around all disability all disabilities in general, where oh no. It's a bad thing. When we know it's not that. But they don't know that because that's all they've ever seen. So just being able to reassure them and provide them with support and maybe link them in without telehealth nurse. And just let them know a little bit about my own story as well, and how my cerebral palsy journey kind of led me to where I am and just let them know it's not all doom and gloom that they may think it is.


Amy [00:20:26] Hi, Peta. I'm Amy. I'm a registered nurse. I've been a nurse for around 17 years. I work for the Cerebral Palsy Support Network in their nursing role. I'm also a mother of three amazing boys, and my twins have cerebral palsy.


Peta [00:20:40] And tell me, why does a cerebral palsy network have a nurse on staff?


Amy [00:20:47] My role started as a government funded initiative called A Nurse Navigation, a kind of pilot really, with the aim of helping individuals and their families navigate the health system and the disability sector. And my role has really evolved from there. So I still do that, but I also work with families to support them in the beginning of the child's diagnosis. I work with adults with CP, and so the organisation really sees great value in having a registered nurse who can support.


Peta [00:21:28] Before we jumped on this, call us saying that you listened to my episode with my mum. I did a special episode for Mother's Day and my mum really didn't like going to support groups. She found them very full on and didn't really reflect her perspective of what it was going to be like for her being my mother. And one service, the Cerebral Palsy Network offers is something called Cuppa Chats. Now that's both for and I'll let you explain it, because you'll do a lot more than I will. But that's both for parents and for people who have disabilities.


Amy [00:22:03] We have an adult Cuppa Chats group, which is for adults with cerebral palsy, and that's often run by Nat or Josh or someone else within the organisation, and that gives adults a space to chat about anything really. It doesn't have to be about this cerebral palsy. I run the parents Cuppa Chats and, you know, I really I agree with you. I, I really, you know, I have never really felt I need to go to a support group for me. I just wanted to connect. I wanted to have a group of parents that were having similar experiences as you would. You know, when you go to a mother's group, when you become a mother for the first time. And I was able to find that, which was fantastic. So I guess with Cuppa Chats, I really just want it to be something like that. That occasional catch up chatting about our experiences often will have people coming with younger children and, you know, we might chat about getting our kids into day-care or getting our kids into kinder or school and, you know, the old mainstream versus specialist and, you know, the issues that I guess impact our children and our lives that potentially don't add significantly for other parents. And so it's a really great way for people to information share. I think that's what I like from it. It's more of an information sharing. You know, I learn from it all the time because parents are using resources that I haven't heard of or perhaps they're using a service or, you know, a therapeutic group. I went to one once where one of the parents was talking about an equine horseriding therapy that they used, and so that's something I was really interested in and I was able to look that up. And so we kind of just learning from each other.


Peta [00:23:54] Tell me, what are the common health concerns that you see for people with CP?


Amy [00:24:00] I think the biggest health concern I often see is pain. I have a lot of adults with, CP, that come to me and talk about their experience of pain and the way that this shape changes in their body over time. And sometimes that's really unexpected. People come to me and say, Oh, you know, in my twenties or thirties I felt like this, but now that I'm getting a little bit older, I've got a lot more pain, particularly in the colder months. I hear that a lot. And I've really found, you know, I guess when I went into this position, I thought a lot about working with families where their child had just been diagnosed and, you know, they needed support because that's kind of the experience I had, and I certainly do that. But I think one of the much more common things I see is adults that just don't have the support that they need. They might be looking for a GP that works with people with CP and, you know, very few around. There's no sleep specialist per say. People always ask me, you know, where do I go? Who's the specialist that I go see? And I said, Well, I haven't actually got an answer to that yet because there really is no one specialist. Yes. So you could go to a neurologist if you need diagnostic clarity or, you know, you might go to a pain specialist if you in a lot of pain. But there really isn't a great deal of health practitioners that really know CP really well. And I guess second to that is mental health. And I think a lot of the time that stemmed from from everything else, the pain, the social isolation. And so finding mental health specialists again that specialise in CP or just disability alone can be really tricky.


Peta [00:25:43] Natalie and I were speaking as part of this episode, and the listeners would have heard us talking about how lost we both felt when we left The Royal Children's Hospital as adults and how we weren't educated about what our lives were going to look like. There was really little education, at least for me, and I'm sitting here at 33, so it's it's fantastic to think that the younger generations aren't going to face what many of us have sort of looked down a dark tunnel and not know where to go to from here.


Amy [00:26:17] Yeah, absolutely. I think that, you know, that's the same experience that I had, I guess, as a parent right from the beginning. I asked the doctors. My boys were diagnosed at 18 months. They were born at 28 weeks. And I asked them, you know, where can I go for support? Who can we access to help guide us through this? And they really didn't know. And I have so many parents say the same thing. Adults or young adults are transitioned to other services, even when they are really complex or have very significant health needs. Often you'll find that people will be across different health services. They'll see one doctor for this, They'll see one doctor for that. And it gets really confusing. Or you'll have adults that are relatively well and don't need to access services for a period of time in their life. And then they do get to a time when they do need to and they're just not sure where to go back to. And so, you know, I generally will try and help with that. But even on trying to find the answers to some of those issues. I've always thought that that being a nurse has been really advantageous for me personally navigating the system with my boys. But at times it's also been really scary because I, you know, I kind of know what can happen and, you know, what might lead to what. But I think ultimately, in the end, you know, after a few years of my twins, nearly eight. So after having done it for a little while now, not a great deal of time. But, you know, it's really helped me be able to navigate the system. And likewise, in my professional life, it's really given me a unique perspective. Also, the really good thing of working at the Cerebral Palsy Support Network has been I've learned a lot from adults with CP, which has one helped me with my boys, but it's also really helped me with the clients I work with and able to help reassure people and then reassure myself if it happens to my boys. But then I really have found that I've learned so much from, you know, so many different adults with cerebral palsy and seeing the different ways that it can, you know, impact their body and impact their health. I think I've learned so much from that.


Peta [00:28:41] Thank you for listening to this very special episode about the Cerebral Palsy Support Network. I hope you enjoyed it if you did. Can I encourage you to share the episode on social media? Share the episode with a friend in real life, or write them, review the show on whatever platform you're listening on. It'll helps more people find the podcast. Until next week. Have a good one, guys. Fine. I'd like to pay my respect to all Aboriginal and Torres Strait Islander cultures, but especially to the pioneering people where this podcast was recorded.


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