Audio
Rehab in a kid's life
Rehabilitation strategies for children with spinal cord injury - personal experience and professional insights.
This series from the SpineCare Foundation, produced by Sydney community radio 2SER-FM, aims to inform, empower and enlighten families impacted by Spinal Cord Injury. The series features 40 relevant voices - young people with SCI, their parents and caregivers, academics and clinicians working in the field.
This final episode of the 2024 series looks at rehabilitation strategies for children with spinal cord injury, with insights from two expert guests: Adrian Byak, a spinal specialist physiotherapist, and Angela Pulini, a parent whose teenage son has lived with spinal injury since he was one.
These guests offer a blend of professional expertise and personal experience on how to incorporate rehabilitation into a child’s life.
Adrian discusses key rehabilitation principles, emphasising the importance of developing skills for independence and encouraging participation in everyday activities. He stresses the need to focus on improving a child's overall quality of life and the benefits of finding physical activities that are both enjoyable and sustainable.
Angela shares strategies her family employed to support her son’s health, development and wellbeing over the growing years. While acknowledging the sacrifices involved, she highlights the profound positive impact of consistent physical activity, particularly in her son building mental toughness, self-esteem and a positive mindset.
More about our guests:
Adrian Byak is a skilled physiotherapist with over 25 years of specialised experience in spinal cord injury care spanning tertiary acute hospitals, a leading inpatient spinal rehabilitation unit, statewide community outreach and a specialist Assistive Technology and Seating Service. Adrian has been Manager and Principal Therapist at Optimise Your Level Physiotherapy Practice for over a decade; has travelled internationally and nationally to keep abreast of advancements in spinal injury management; has presented at national and international conferences; and has published extensively in leading physiotherapy, medical, and spinal injury journals. Adrian primarily works with adults with spinal cord injury, but also has valuable experience working with paediatric cases, particularly around the time that children transition through adolescence and into adulthood.
Angela Pulini is a devoted mother to three teenage boys, one of whom sustained a C5 spinal cord injury at just one year old. Throughout her middle son's journey, Angela has been a tireless advocate and support, exploring and engaging in a wide range of exercise and rehabilitation approaches to foster his physical health and overall well-being. Beyond her role as a parent, Angela is involved in the disability sports community - as President of NZ Powerchair Football, where she's passionate about promoting the sport and celebrating the achievements of its athletes.
Note: The views expressed in this podcast are those of the speakers and do not replace professional advice. Always consult your qualified healthcare professional/s to consider your unique needs and goals for individualised recommendations and rehabilitation programs.
MUSIC 0:00
Anna-Marie Reyes 0:09
Hello, welcome to SpineCare's 40 Voices for 40 years podcast, a podcast about childhood acquired spinal cord injury and dysfunction, produced by 2SER radio on behalf of SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics. I'm the executive producer for this podcast series, Anna Marie Reyes at the community radio station 2SER 107.3 FM. The title of this podcast episode is Rehab in a kid's life. Guests Adrian Byak and Angela Pulini will chat about their own encounters with rehabilitation, exercise therapy and activity-based therapy for a child with spinal cord injury.
Angelina Pulini 0:59
I definitely don't have regrets. I actually think it has been a positive thing, because if I look at Cooper physically, he actually looks really good. His legs are very good, apart from just having those, I guess, contractures and his hamstrings and his knees, which you don't really notice until you try and stretch him out, and he's really tight. I just remember all the hours that I used to put him in a standing frame, and it was, it's hard work. It's like I had this commitment to do it every day so that his legs would be as straight as possible. But yeah, I think it has been beneficial for him.
Anna-Marie Reyes 1:36
And you just heard the voice of Angela Pulini there. She's a devoted mother to three teenage boys, one of whom sustained a c5 spinal cord injury at just one year old. But before her, though, you'll hear from Adrian Byak, who's a highly skilled and respected physiotherapist with experience in working in hospitals community outreach and with assistive technology. Adrian Byak here speaks to SER's audio producer Oscar Burns.
Oscar Burns 2:13
Hi, Adrian, welcome to the podcast. We're talking today about rehab in a kids life. Now you're a highly experienced and specialised physiotherapist with about 25 years working with people of all ages - talk us through a few common terms that parents might hear in relation to physio and rehabilitation.
Adrian Byak 2:35
So some common terms in relation to physio that parents and families might hear and want to explore, a lot of the times people talk about exercise therapy and activity based therapy, and a lot of that is just making sure that we're using general principles of exercise. So we're trying to do things like improve strength, improve capacity, improve speed, just like you do when you're performing exercise at the gym, and then, like activity-based, just... it's just trying to take it to that next step and put it into an activity.
So something that might be relevant to them being able to participate in PE or participate in a sport and other terms might hear is functional training, putting into a structure, the process of trying to achieve the goal of, let's say, sitting or crawling or walking. It's practice. Like, sometimes, when we're doing rehab, we we do it for like, you know, they'll walk 10 metres and sit down and we'll also, that's great is where, when you when you learn a task, it involves a lot of practice. It's not just one or two attempts, like a kid will have 50 attempts in a couple of minutes. And there's all those, the stuff you hear online about being an expert at something that 10,000 hours in the practice.
So a big part of rehab is trying to get that practice. And therefore, a lot of the times we do make it activity based, we all will make it play based or make it functionally based. And a lot of that is one, so what's relevant, but two, so that you're doing a sufficient amount to get the gains that you need, you'll often hear terms like spasticity and contracture, and they're often things that we see and observe following a neurological condition. And what spasticity is, it's like heightened tone or your resistance to movement, they often sit in a position for long periods of time because the muscles kind of turned on that they sit, maybe with their toes pointed or wrist bent, and they can develop things like contracture, and that's another term you'll come across, and contracture is just the shortening, usually, of a muscle, and it's therefore limiting its range of motion.
There's kind of things like stretches, there's medications to try and ease the spasticity, and there's also more radical things like surgeries, but there's stuff in between, like wearing splits and wearing special shoes and things like that. You'll also hear about. But partial support weight bearing and body weight support treadmill training. And there's also kind of functional electrical stimulation. That's where people might put electrodes, like through, you know, a commercially bought device on the muscles, and they'll stimulate the muscle from this device and it will contract. And you can kind of do that in an activity like cycling your legs around and things like that.
So you can use electrical stimulation to cause contraction to then hopefully cause a movement and increase blood flow. But it's not proven to say definitely lead to neurological recovery, but it has been shown to potentially help things like, you know, insulin sensitivity and so, you know, like, when we talk about whether kids need physio, like what we want is just kids to be involved, and we just want participation.
Oscar Burns 5:52
You've got three kids yourself. How important is it to set up realistic expectations, and what are some of the best advice you could give to parents and in terms of allowing their children live their life?
Adrian Byak 6:05
What my son likes, and, you know, what I thought he would like, and do their poles apart. And so what you've got to you've got to do is you've just got to try and find the things that they're interested in and the things that they want to participate in and just really try and work at least find something physical that they don't mind doing.
Oscar Burns 6:27
And Adrian, what about the timing of engaging a physio? Tell us, maybe break that down a bit.
Adrian Byak 6:33
We don't like necessarily [?Me] physio every week. If there's injury or illness, then yes, for sure, and rehab and exercise actually doesn't need to be done by a physio at all the time. So it really needs to be enjoyable. It needs to be sustainable sports and that that's not physio, but it kind of does better than physio a lot of the time. So look, if there's a specific skill that needs to be learned, or a challenge or a new problem, yes, you can get physio, but the timing of it is you don't necessarily need physio for the rest of your life. You need to be participating and you need to be exercising.
And if there's some aspects of physio that will enable you to do that, such as learn a particular transfer, get rid of some pain, then we do that. But otherwise, it's just a matter of getting to you to the point where you can participate regularly.
Oscar Burns 7:22
Adrian, what's been your experience of the most helpful and meaningful types of physio that a kid can do?
Adrian Byak 7:30
I think it's really got to be functional. I think, you know, we've got to the kids have got to we want them to be independent and be able to transfer and do things like that. Yes, we had to do some strengthening, and we had to do lots of skill training and transfers, and then he had to do lots of lessons and stuff like that. You've got to look at what's the end goal. And the end goal is to have kids that are kind of can participate, kids that can be independent. And then you just got to find exactly what that participation is and what that independence is, and if it's driving, therefore we've got to work on having transfers good enough to drive, having strength good enough to transfer, and just work back that way.
And a lot of that you can get through just them being active. If a kid's active, they're transferring into an out of chairs, and they're doing things like that. So, yeah, so you've just gotta, you gotta, kind of be realistic about what the actual proper goals are, and then function you work towards them.
Oscar Burns 8:30
Yeah, you mentioned that being realistic. How do you say you're working with a child and their family and their their expectations, and I guess from their perspective, what they see the end goal as isn't very realistic from where you're standing. How do you help them?
Adrian Byak 8:47
It is a hard one. And I think what we've got to say is that walking is not the end goal for a lot of people, and that the child or the family is certainly not a failure or anything if you don't walk - like the biggest defining factor if someone will walk is not how much rehab you do, not how hard you work, not how nice you are, not how much money you've got, not how many friends you've got. It's the injury itself, but something that is kind of nearly predetermined. So you know. And I have to say, the only... I love working spinal cord injury, and the only thing I don't really like about it is that fact that the biggest determining factor is the injury itself. And it doesn't matter how nice the person is, sometimes the injury is injury.
And I have wonderful [?] that I look after. He's a C4 quote, and he drives with his chin, and he would do anything just for a flicker in his arms, and he hasn't got it but, and that that's the really hard thing, but what you've also got to work out is that you've also got so much to lose if you don't kind of just get on with life like, you know, as I said the other day that, you know, we had a C6 quad that's off driving independent and.... within a year, he's now going to uni, driving a car, has a job visiting friends up the coast independently, can do 90% of his care by himself.
And so by pursuing rehab or forcing people like kids to go to do exercise and stuff like that, they... you're kind of missing out on a whole lot of other stuff that they could be doing, stuff that's, you know, like, yeah, just playing with peers in the afternoon. If you're saying, I don't, you know, I'm not going to send him to after school care because I want him to go to rehab. Or, you know, he's not going to play with his friends or siblings because he's got to go to rehab. They miss out on a lot of it, that other stuff.
And I remember, this is an adult again, but one of a really good colleague of mine, he's a patient of his, was saying, oh, you know, I want to go overseas, and I want to get stem cell therapy here, and I'm going to go to then do rehab here, and all these really radical kind of options, which I'm sure parents attempted by and the guy kind of said, Oh, look, what have I got to lose? And the physio turned around and rightly said, heaps. He said, like, you got two kids at home. You've got all of their upbringing. You've got, you can go and chase a dream overseas, or you can be a really good parent. You can, you know, and so, and he had, he definitely was going to be a good parent. Yeah, he was maybe get some, some return, probably not by chasing all these things.
So sometimes they've just got to, you know, you've got to kind of think, you know, the kids, they will be able to get in now, they will cheer, they will be able to play sport. They will be able to do all these things, if, if you let them, and sometimes not making them go and do endless amounts of rehab for this unrealistic goal is the kind of right thing to do, is just to let them catch up with friends, let them find sports and stuff that they like.
Oscar Burns 11:54
Adrian, that's the perfect note. Gotta say, a big thanks for for coming on and sharing really interesting and, yeah, important information on that topic.
Adrian Byak
Thank you. No trouble at all.
Anna-Marie Reyes 12:06
And you just heard from 2SER's audio producer Oscar Burns there speaking to guest Adrian Byak. Adrian is a highly skilled and respected physiotherapist with over 25 years of specialized experience in spinal cord injury care, his experience spans tertiary acute hospitals, a leading inpatient spinal rehabilitation unit statewide, community outreach and a specialist assistive technology and seating service.
Next up, you'll hear from Angela Pulini, devoted mother. Angie has been a tireless advocate and support for her son who sustained a C5 spinal cord injury at just a year old. In this wide ranging chat with Angie, she explores how she engaged with rehabilitation approaches and the range of exercises her son used to foster physical health and well being. She started these exercises very early on with her son, as she felt starting early, along with rehab, could increase his chances of independence with his future life.
Angelina Pulini 13:14
I guess all my energy as a parent is, it just goes straight into, What can I do to fix this? And you throw yourself at you're researching all of these options of getting Cooper better. How can I make him stronger? How can I encourage neuro pathways? What are the things that will just improve or give him the best progress from his injury, and because he was so little, being sort of, you know, 12 months of age, there was a lot of discussions around the neural pathways and how he could potentially get some better recovery. But it's so much of a process that you find that whilst your heart's breaking and you're throwing yourself into survival and over time, as time starts to progress, you realize that those windows of opportunity start to get smaller and smaller, and that's kind of something that you slowly come to terms with.
So you're not only coming everything's a bit of a mental battle for a parent, because you're having to accept that his bladder works differently. He has personal cares and other things that sort of start to come into the picture that you might not realize. So I guess my focus was really about, yes, rehab, as much functional stuff I could do with him as possible. He's actually had a few surgeries to help with his function, because his right hand was was supinated. It didn't have the pronation, so it wasn't in a very functional position. So they ended up getting... doing a tendon transfer, and that put his arm in a much more functional position. So that made things easier for him to do a bit more exercise based stuff, but also from a learning perspective, and using a laptop and that sort of thing.
And while he's little, it's easier, and he's quite malleable at that point, and so I was quite dedicated to that. There's times that Cooper has come away from those sessions and gone. I'm tired, and I'm sure it's really increased his heart rate. That feeling is got to be good for him. I know that he's actually had that sense of feeling I feel stronger. I'm looking to reintroduce a lot of the stuff after he recovers from spinal surgery, because he's found not being able to do the hand cycle because of his back has been giving him a bit of grief, just the way it is. He gets a bit of pain, so doing those movements just wasn't helping him anymore.
We investigated a more dynamic race, which he's been using since it's just been more for postural support. He really likes it because it just gives him some flexibility. It doesn't break down his skin at all. But obviously, as a mum with two other boys that there's only so much time you can do with that, as he got older, he's growing a lot and all of that, you want to spend less time doing that, because I just wanted to be his mum. And I actually didn't want to be his therapist, and I didn't want to be everything. I just wanted to be his mum.
Anna-Marie Reyes 16:38
In addition to finding time to be a mum for her son very early in the piece, Angie also made sure to explore and make use of different styles of rehab and approach to exercises to help her son's development through his growing years. For example, using a hand cycle as well as an FES bike. She also asked a trainer who was young and could relate with her son's age generation to work on the exercises with her son to keep him interested and motivated. Also, as President of the New Zealand Power Chair Football Club, shared a good understanding of the role of sports and exercises that it's not simply about therapy, but also how to make it fun, engaging in age appropriate [way].
Angelina Pulini 17:22
When we moved back to New Zealand, he would have been five then, I think, or just turning five, I'd done everything up until that point for him. And I actually, really wouldn't take a trainer come and do some stuff with him, because I go to the gym as well, just to keep fit, and that's part of my mental side of things I need, it's just such a relieves a lot of stress for me, and plus, I need to be strong as well with physically. So I met a personal trainer there that was quite keen to work with Cooper. And we went to a bit of a neuro physio place, and we I got the personal trainer to come along just to understand how what it's like when someone has a spinal cord injury, and just from a functional point of view, what sort of things to be mindful of.
I actually think he was very compliant. He didn't seem to mind it. He seemed to be quite engaged. I think he's always had a sense of, Maybe this is what can help me like it, and just seeing his body do things when, I suppose, grew up, when he's quite little like that, and you've got some trainers with you, and you're they're moving your body in different ways, and you're starting to get more sense of yourself and what you're capable of. And so we did a bit of few sessions with that, but then we worked things out on ourselves.
So yes, I had an FES bike for Cooper, and so I trained the trainer on how to use that, and he also did strengthening and cardio type workouts with Cooper to help increase his heart rate and get strength in his arms and things like that. So we did also get a hand cycle bike, which Cooper went out with the trainer. So it was great, because it actually formed people formed a really nice bond with the trainer. He was in his 20s, so they had this really great relationship, and it meant that I didn't have to be a part of that as well, and it freed up my time, but also, I think, improves my relationship with Cooper, because I'm not, it's not mum doing everything, yeah.
So his trainer would try and make things as fun as possible. Even do, he would even do timetable quizzes with him and stuff like that. So I was like, they would do games like that. So that was really good. Obviously, his, if he's standing and things like that, or he's in the FAS bike, we'd put on a movie or something like that. So trying to do things that take away. Be it looking like it's actually therapy or hard stuff was also a good thing. It was like his brothers might play Playstation while he's seeking watch and engage at the same time.
But yeah, Cooper's now 15, so he understands that training is a training thing. We had an FES bike really was to give him some range of motion his legs, some stimulation to his legs, and he felt when that stimulation kicked in, he felt it. He often found that a little bit challenging. If he hadn't been on it for a while, he gets the feedback is stronger. He would get a referred response to that exercise, he didn't mind it, but sometimes he felt that referred pain or sensation a little bit challenging. There was no intentional movement from there down.
But when it came to doing stuff with his personal trainer for his upper limbs, it would be around increasing his heart rate, so where he would do boxing, so keeping his hands up and doing that, which increases heart rate. So they would do pads and stuff, and which was hard for Cooper. Didn't really have a lot of scapula, but he did have shoulders, so he's compensating with muscles to create those movements, and obviously not tricep extensions. So much. He would do things like that. He would do bicep curls, he would do resistance stuff and basketball, and then he would do a hand cycle as well.
Anna-Marie Reyes 21:31
Working with children with rehab and exercises are not without challenges, especially as a parent, there are other family members a parent feels responsible for so the challenges include juggling that role while working on her son's rehabilitation. It's also about being aware of and taking good care of her own health as a parent, Angie also spoke of the fact that her son is growing up, and she expected his interests and motivations will keep evolving.
Angelina Pulini 22:00
From a sustainability point of view, it is tough when you've got other family members and other commitments. And he's just not little anymore. He's becoming an adult, and you know that time management is not as easy anymore. From a mother's perspective, you never have complete control over like it's there's always something new that pops up, and it's just constantly working through one issue after another and trying to prevent new ones from happening. There's moments where it just wears you down as a parent.
It's things like that and saying that we're quite a close knit family, and I'm thankful for Tyler, my older boy who has been doing Cooper's cares through school, but he knew that I was struggling finding a teacher aide that would actually do his catheterising at school. And the problem with that is that you go through teacher aides, and Cooper doesn't want a new person each time. It's just so frustrating that Tyler came to me and said, Mum, I'll do it.
I think all of those things have really helped Cooper from a bit of a mental toughness pushing himself as well, like when he's tired or he's gone, Oh, this is hard. There's someone pushing him and then getting success from going okay, building up to okay, I could only do five before now. I can do 10, sort of thing in terms of reps, or something like that, or going in his hand cycle bike, and he could actually go further, or found something a little bit less challenging than he did first time, sort of things. And I think as he gets older, and he's Yeah, like you say, he's trying to find himself, and he needs to have other relationships and other people that he can trust and work with, and all of that sort of stuff. So I found that to be a really positive thing for Cooper.
Anna-Marie Reyes 23:58
Angie's son kept at his rehabilitation and exercises through the years, and when he reached the age of 15 years old, her son became a highly accomplished athlete representing his country at an international level in wheelchair rugby. Angie feels that the early rehab and exercise routines she and her son got into offered him opportunities for his future that he may not have thought was possible. She especially acknowledged the strong mindset it gave her son, following the routine they both came up with that worked well for him over time, especially with his mental attitude and belief of what he's capable of.
Angelina Pulini 24:37
I definitely don't have regrets. I actually think it has been a positive thing, because if I look at Cooper, his legs are very good, apart from just having those, I guess, contractures in his hamstrings and his knees, which you don't really notice until you try and stretch him out, and he's really tight. I just remember all the hours that I used to put him in a standing frame, and it was. It's hard work. It's like I had this commitment to do it every day so that his legs would be as straight as possible. And then it's been since he started high school that I just have not had that chance to do it. He does have a sit-to-stand power chair. Now it gets him into a bit of a stand, but he still has, he's not as complete straight stand, so that we need to do a little bit more as well.
But yeah, I think it has been beneficial for him, obviously, now just his spine is he needs that full rotting done, which will give him that improvement in his stature. But yeah, I definitely feel it has been worth it. I think having the personal trainer was a really cool thing, because it was like he was cool. He's fit. He was good looking. Cooper established a really good friendship with him, something that made the training a lot better, because he wanted to prove he was good. He wanted to get big biceps and stuff like that that has come from being age appropriate kind of therapy all the way through and trying to accommodate his things to making it fun. Basketball was one thing that he loved to play, but obviously having that strength and stuff to we just had to make adaptions with balls and hoops being at the right height level and stuff like that.
Anna-Marie Reyes 26:23
Angie shared the importance of having peers around his son who shared his same interests, such as his wheelchair sports, especially power chair football. She felt her son is quite self assured and believed in his own skills, while balancing it out with a good mindset in managing pressure and holding a mental attitude that helped with his goals and plans for the future.
Angelina Pulini 26:48
It's the same for the other boys about they've got to train to be better and things like that. So he understands that we all do it, and we all hit on each other's cases about it, so he's not the only one, and yeah, and he does feel better for it, and the power to football thing was another thing that really helped him, I suppose, become who he is as well, because he's realised that he can play competitively. He's representing his country, and he probably never thought he'd be able to play a sport, so that's been a huge thing for him. He loves it. He wants to just play it all the time, and finding that truly amazing for him.
Power Chair Football is... you're not really required the strength as such, because you're pretty much controlling a powered sports chair, but he's got a very good mental like he's quite competitive, and he wants to be the best. That's what I'm quite impressed about, because he he that's a mindset, and that's something I've always hoped for with Cooper, is wanting to be good at something because he hasn't had the physical attributes to to be good at something so mentally, and whether that's come through us pushing him and just our family dynamics have all been about sport, and the kids get lectures after the games. Why didn't you do this? Why didn't you do that? You've got to.
So it's not just one person. Everybody hears it, and they will learn off each other as well. It's quite good, but it's no different for Cooper, because we just treat them like everybody else. It's, yeah, it's all about a mindset. And if you hear it, talk about anyone in the sports these days, yes, for those that play a physical sport, you have that, but it's more about how you can manage pressure, how you can your mental attitudes. That's the concentration. It's been able to maneuver your chair really well and just come off that wheel cup in Sydney and like, it's insane. It's just amazing how that they can use their chairs. And it's no different to seeing like able bodied athletes. You always have your really celebrity athletes, no different in powered football.
Anna-Marie Reyes 29:11
Angie also believed that the early rehab and exercises has greatly benefited her son's mental attitude about both his sports study and personal goals while going through the usual vulnerabilities in his teen years, she felt that the early preparation opened his mind to the benefits of self governance and what he thinks about himself as a person helping him through his teen years, especially that his son adopted a growth mindset along his own sense of self assuredness and confidence, which she taught prepares him for his life of independence.
Angelina Pulini 29:48
If he hadn't had that exposure or experience, he may not have been, as I suppose, in tune with himself, not probably known what capability. He could have, or how much he could have pushed himself, or had some feeling of feedback. You know, when he did something, he goes, Oh, I can do that. And I definitely saw a lot of gains with Cooper. I mean, albeit very slow gains, and that's always been the thing throughout his 15 years, is is the gains have always been very small. It's been a very slow progress. But when I look at his strength, from when he was young to now, if he hadn't have done those things, I don't know if he would have developed that movement and strength as well.
So, yeah, yeah. I remember when Cooper was on the floor. He could never roll. He can get around in a manual wheelchair, although he uses power chairs more because it's just it's easier. He can squish himself up in his power chair and adjust himself and all of that. I just don't think he would have grown and himself as well, if we hadn't had done whilst he's been compliant in his younger years, as soon as he's hit a bit of puberty and teenage years, he starts to think about how he looks and what he's wearing and his hairstyles, that has created a bit more vulnerability, and he's worried what people think of him, and as much as you try and help him assist with that, and I think he is pretty he is reasonably self assured, but it's just getting in those teenage years and hormones. It's just wanting to be like the boys and, you know, feeling confident about who he is, and just that he is different.
When he was younger, it wasn't such a big deal. They didn't really worry about him, and to be fair, they don't either now, like they're very good at his age, but it's him that they get a little bit more self conscious, and I think it's just those typical teenage years. And I have conversations all the time about how he feels and what he thinks of himself. And he actually is quite strong. He loves who he is. I think mentally, he's reasonably self assured, and he's coping OK, even though he doesn't love school, he's got a good group of mates that he likes to hang out with, and it's just now, I think it's really about looking forward to the future and what opportunities he can do once he leaves school. I think that's a work in progress. He's not sure what he wants to do, but I think, you know, it's still very much about that independence and how we can give him that confidence with not so much support.
Anna-Marie Reyes 32:42
Angie observed that having a network of people around him and his peers is critical in developing the person he wanted to be, especially that he's also tuned in to where he may be able to benefit from external assistance through public and private support services with living with spinal cord injury, and this is where Angie suggested parents should not forget about as many services now can be made receptive and tailored towards particular needs of children and young people living with spinal cord injury while planning for their future independent lives, her son now finds inspiration from his own peers on how to plan his next goals of living on his own, studying at uni and having his own lifestyle.
Angelina Pulini 33:28
He's come across one hurdle, and there's another one, and it's always continual. The good thing is, when he's in amongst a group of people like power chair football, that have really challenging conditions. It's been really inspirational for him to see how some of these people are living on their own. Australia obviously have very good facilities. They've got, like these apartment buildings all catered for people with disabilities. Even though you've got carers that come in and help you, they have a concierge or as like a nurse, and they can just press a button and come in and help them if they need it. Cooper's seen how people like him, and probably worse off than him, can live relatively independently, and that's what we're trying to encourage for him, and that's always going to be our goals for the next few years, about how he can plan for that you have to apply a mental strength to want to do it as well.
Whilst Cooper may not always enjoy doing therapy, having the discipline to keep doing it creates a mental strength. That's the thing. For example, if you're lifting weights, I don't think anyone really enjoys lifting weights, right? But it's a mental strength to apply yourself to keep doing it that then not. Only gets you strong, but then feeds back into that mental strength of going, I see the benefits, so I'm going to keep doing it. And that's a discipline. So you get the discipline, and then you get that feedback of, oh, I need to push myself. So that's, it's motivation, that's, it's all of those things that contribute to you being a stronger minded person, because you could just go, Nah, I don't want to do it. And that's like a fixed mindset rather than a growth mindset.
Anna-Marie Reyes 35:31
You just heard from Angela Pulini there, whose son sustained a C5 spinal cord injury when he was a year old. Angela remained a tireless advocate and support throughout her middle son's journey, exploring and engaging in a wide range of exercise and rehabilitation approaches to foster his physical health and overall well being beyond his teen years, Angela is involved in the disability sports community, serving as the president of New Zealand power chair football, where she's passionate about promoting the sport and celebrating the achievements of his athletes.
In this week's episode, you also heard from Adrian Byak, with over 25 years of specialised experiences of physiotherapist to hear about and find out more about this week's guests. Visit the SpineCare 40 voices foundation online, and that ends this week's episode. You've been listening to SpineCare 40 Voices for 40 Years, produced by radio 2SER-FM. You can subscribe wherever you get your podcasts. This series is recorded in Sydney. We acknowledge the Gadigal people of the Eora nation as the traditional owners and ongoing custodians of the land. Where we record this podcast, we extend our respect to the traditional owners of the lands that you and our guests join us from. I'm Executive Producer Anna-Marie Reyes. See you in the next podcast.
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