Cerebral conversations episode 5 Neuroplasticity in action

Episode 5 | Neuroplasticity in action | Arran Keith’s Story

Neuroplasticity and therapy can help to improve movement and mobility, but the challenge is staying motivated to get the most out of it. The good news? Therapy can be a whole lot more fun than repetitive exercises.

Claire and avid RaceRunner and triathlete, Arran chat with us about technology, wheelchair races and all the other creative ideas and tools they use to help Arran smash his goals to smithereens (not least of which is competing at the 2024 Paralympics – watch this space!).

Listen to Episode 5 here:

Find out more about HABITILE and see Arran in action 

Read the 0-2 Early Childhood Intervention guide 0-2 ECI guide

Read the Guide to CP Interventions

Find out more about the incredible work by CPA’s research team

Sign the Window of Opportunity petition for national early screening of CP

Find out about Dr Hayley Smithers-Sheedy and her team’s work on preventing CMV in pregnancy

Find out about Dr Cathy Morgan and her team’s work on early detection of CP

Episode Transcript 

Ben McAlary: Hello and welcome to Cerebral Conversations. My name is Ben McAlary.

Andy McLean: and I’m Andy McLean. Hello. In this episode, we talk with the youngest guest in the podcast series, Arran Keith. Arran is a 12 year old force of nature. He’s a cyclist, he’s a swimmer. In fact, he’s a triathlete. He’s smart. He’s funny, he’s well travelled. And yep, he lives with cerebral palsy. But that doesn’t define him.

Ben McAlary: Absolutely not. Joining Arran, Andy and myself in this episode, we have Claire Smart, who is Arran’s physiotherapist from Cerebral Palsy Alliance. Like many physios and athletes, Arran and Claire have developed a very strong friendship, and in this episode we see how the two of them work together, how they set goals, and often in Arran’s case, how he smashes those goals to smithereens.

Andy McLean: Yeah, he absolutely does. And besides Arran’s kind of sheer force of, will, I think the thing that will stay with me from this episode is really just the amazing role that technology’s now playing in physiotherapy for people living with cerebral palsy.

Ben McAlary: Yeah. And for kids like Arran, physio exercises aren’t a daily grind. They’re flexible and they’re fun. And I think all of us can relate to that. If exercise is enjoyable and it’s so much easier to stick at it and keep making progress.

Andy McLean: OK. Without further ado, let’s dive straight into the conversation. Let’s start with you, Arran. Could you just tell us a little bit about the kind of cerebral palsy you have and how that affects your day to day life?

Arran Keith: Well, I have spastic dystonic quadriplegia and it affects my daily life, like getting dressed and stuff, so I do need a hand with a few things but other than that I’m quite independent.

Andy McLean: And Arran, how old are you at the moment?

Arran Keith: I’m 12.

Ben McAlary: Claire, tell us a little bit about what your job involves and perhaps your origin story when you first met Arran.

Claire Smart: Yes, I’m a physiotherapist. I work in Canberra and as part of my job, I assist people with many different types of disabilities, physical or neurological. So anyone that’s from infants and babies, up to adults and older people, and most of the therapy that I do is physical based. So anything that people have goals to working towards improving their mobility and their movement. And there’s many different ways that we carry out that therapy. So some the way that I met Arran was through an intervention program called HABITILE and HABITILE stands for hand by manual intensive therapy, including the lower extremity. And so HABITILE is a two week intensive program where we do sixty six hours of therapy in that time. And so when I travelled up to Sydney and it’s one on one therapy, so I was paired with Arran but there were also six other kids and six of the therapists that were doing this intensive program at the same time. So it was a whole lot of fun. Yeah, that’s I guess where our story started.

Andy McLean: So how did the two of you first meet? Did you meet in person?

Arran Keith: Oh yeah, we met in person at HABITILE.

Andy McLean: OK. Right. So Arran can you tell us w hat was it like when you first met Claire? Like, what were your first impressions? And you can be honest, even though Claire’s on the call.

Arran Keith: It was actually quite nice, we bonded quite quickly so yeah it was nice.

Andy McLean: And how would you describe HABITILE to somebody who’s never come across it before, Arran?

Arran Keith: So my first one, I didn’t really know what to expect. Yeah, it was it. It was really good. I got used to it after two days, which is nice. I wouldn’t describe it as fun but tough, and I’ve met a lot of friends there so yeah, it’s been really nice and I think they should enjoy it.

Claire Smart: So something that’s really unique about HABITILE is that you can work on a lot of goals at the same time, often in therapy, we know all of the evidence says that it’s most effective if you do one or two goals at the same time, we can’t learn to run a marathon and juggle and sometimes another skill at the same time. But during HABITILE, we worked on, I think, between 12 and 20 goals, and it was just incredible. I think by middle of week one, we were like, right we really need to come up with some more goals. It was just incredible to see Arran achieve, and all the other kids achieved so much in such a short amount of time as well. And yes, it’s something else about HABITILE is that you’re doing therapy the whole time from when you walk in the door. We make the schedule for the day and then you’re picking what activities you’re doing. And then once it’s morning tea time, you’ve got to cut up the fruit and hand out all the plates. And Arran had a goal on filling up a cup with water, so he was the water server to everybody. And then you have to do your own washing up as well because you needed to work on your upper limb skills of standing and washing and putting all the plates away. And then when it comes to lunchtime, it’s time to make lunch and we made pizzas and we made lamingtons and we made a smash cake as well.

Arran Keith: Oh yes, I remember that smash cake, that was good.

Claire Smart: There was no shortage of fun at HABITILE and no shortage of laughter as Arran and I were in stitches very often. Yeah, especially when it got to yoga at the end of the day, and,

Arran Keith: I never want to do yoga again.

Claire Smart: Well, it was exhausting because we’d just done a whole day of therapy and it was meant to be the wind down time. But some of the positions, like standing on one leg, we’re quite challenging for Arran. So I was having to do half the yoga as well.

Arran Keith: Standing on one leg , ah we don’t know her. So yeah that was quite funny.

Andy McLean: So Claire, in our last episode, we spoke with Professor Iona Novak about neuroplasticity. And as you were talking there about HABITILE , I couldn’t help but think that there must be some neuroplasticity at work there. So can you just tell us, are we in the right ballpark?

Claire Smart: Yeah, definitely. Neuroplasticity is a huge area that’s really underpinning a lot about evidence-based practice at the moment. And so HABITILE is an evidence -based program, and part of the title is that it involves intensive therapy. And so having sixty six hours of therapy all together really consolidates those neural pathways that, you know, sometimes you’ve just got to keep working and keep working and keep working at something. And we know that for people with cerebral palsy, often the some of those pathways are a lot harder to build or they may be damaged. And so an analogy that I really like is imagining that the brain is like a forest and to build pathways through the forest, you have to walk on them many times to clear the foundation and clear the scrub and walk through the trees. And but sometimes if we don’t walk those pathways for a long time or it gets cold in winter, those pathways get overgrown again. So that’s why we really need to keep up a lot of practice and repetition of things. And we know there are some areas in the forest that are a lot harder to break through the scrub or break through the bush. And so we know we need to work a bit harder at those pathways to make them solid and make those tasks easier for people to achieve.

Andy McLean: So Arran does Claire train you really hard?

Arran Keith: Yes, definitely.

Andy McLean: Well, speaking of training, I want to talk a little bit about some of your sports activities because you’re a pretty formidable athlete. Tell us a little bit about your your triathlon.

Arran Keith: Um, so yeah, basically a few years ago, I started doing like Summer triathlons with Cerebral Palsy Alliance and, yeah, I was quite good at them, except this one because I’m terrible at swimming, but yeah, and then triathlons for a while and I really enjoyed them. And that’s how it got me interested. That’s how I got into race running as well.

Andy McLean: And for those who are uninitiated, tell us a bit about race running. What does that involve?

Arran Keith: And so race running is basically a three wheel bike that you stand up and run in and there’s an international competition that’s held in Denmark. And yeah, you would win medals, and so what’s really fun.

Andy McLean: Hang on, hang on, rewind. Denmark Yeah. So did you fly over to Denmark for it?

Arran Keith: Yeah. I’ve flown over to Denmark for the international competition each year, except for the past two years because of COVID. I also get to go on holidays with the international competition. So yeah, that’s really fun.

Andy McLean: So what was Denmark like?

Arran Keith: When I first went there in 2018 it was quite surreal. I’m like, oh my goodness, I’m getting into this sport and here I am now. And I broke a few a few world records and that was nuts .

Ben McAlary: So Arran, tell me, how many triathlons have you raced in?

Arran Keith: I’ve raced in like six basically.

Ben McAlary: Six triathlons. And how many sort of race running events have you participated in?

Arran Keith: I have competed in quite a lot of races, and they’ve been mostly demonstration races, apart from the international competition, one of my favourite races was when I raced at the Invictus Games, which was a demonstration race. Which was cool.

Ben McAlary: Tell me about the Invictus Games.

Arran Keith: So the Invictus Games was quite cool because they got a demonstration race, and it was very fitting since it was The Invictus Games, for like war veterans and disabled people, so that was good. And it really put race running on a large stage for Australia to watch and stuff, which was good for the sport’s growth.

Andy McLean: What would be your your proudest achievement so far on in the sporting field then Arran?

Arran Keith: Oh, probably. Well, starting race running was really good that I was in a 400 metre race and I beat one of my competitors by100th of a second, this was in Denmark.

Claire Smart: It would have been a photo finish.

Arran Keith: Yeah, it was a photo finish.

Ben McAlary: Give me some advice. I’ve never done a triathlon and I’m really interested in this race running. What’s the one piece of advice you would give me if I was just starting out in either of those sports?

Arran Keith: Just do your best and try, you know, as far as you want to go with either sport. I mean, it’s so open ended.

Andy McLean: Arran, can you just tell us, I understand that your coach at athletics is quite well known. Can you tell us who that is?

Arran Keith: Oh, yes. I’m coached by Louise Sauvage. Yeah, it was pretty cool to be coached by her. She’s a very, very hard coach. But she’s also very funny, which is nice.

Andy McLean: And for those who don’t know, tell us about Louise Sauvage, what’s her background?

Arran Keith: So basically, she was a very famous Australian Paralympian. She raced at ’92 Paralympic and ’92 Games, the ’96 Games, I think, and the 2000 Games. And so it’s pretty cool to be coached by her and also she’s won quite a lot of Paralympic gold.

Andy McLean: Has she shared any kind of insider advice or secrets with you in terms of, you know, managing the nerves and being a success on the track?

Arran Keith: Yes, I mean, she’s really helped my endurance, which is good ’cause with endurance y ou like running for those shorter races because you have more stamina and also the long duration between, you kind of enjoy the moment more in those longer races. Yeah, she just said to me, like, be calm and be focused on your end goal, and just walk out and block out all the other things in your mind and focus on that one thing that you really want to get in that race, which could easily be a gold medal or silver medal, or a bronze medal.

Ben McAlary: on the podium?

Arran Keith: Yes, or just get into the line in general, like you don’t even have to win a medal.

Andy McLean: And Claire, do all of the people that you give therapy to end up going on and competing internationally at sport. Is you the secret ingredient here or is Arran?

Claire Smart: Oh, I think Arran was competing internationally before he met me.

Andy McLean: Is there anything in particular, Claire, i f you think about the therapy that you do with Arran, that is sort of strategically trying to build up his muscles so that he can compete and participate in these kinds of activities?

Claire Smart: Yeah, I guess a lot of our therapy took place during HABITILE , so I really had a huge focus on the goals that we were working towards. And I think a lot of it came into that fun and motivation because we know that when you’re motivated and you’re having fun, you’re much more likely to achieve your goals than if I just said that we were going to do 100 squats and walk to the end of the corridor and back.

Arran Keith: And also be willing to do your exercises.

Claire Smart: Yeah, I don’t think we would have got on as if I hadn’t of made things a bit more fun or a bit more competitive. So we definitely had some really nice task specific training. We definitely did a lot of race running, and Arran was practicing some wheelchair sports as well. So I had a sports wheelchair and Arran had a sports wheelchair and we were doing races around the corridors. Aaron had some fantastic, nice functional goals as well, like he one of his goals was to open his AirPods and put them in by himself so that he could face time with friends without mom knowing it. So, yeah, I think definitely including fun in it and really being able to track Arran’s progress. We had personal bests that we tried to beat every single day and plan for our therapy and what we were going to achieve. I think that was a really, really important to Arran’s success.

Andy McLean: Arran, your your achievements are pretty formidable. What’s next for you, dare I ask?

Arran Keith: Well definitely competing in some more international competitions because I really want to get to the Paralympics and how I do that is by training and going to the international competitions.

Claire Smart: I think what Arran’s taught me is being so determined and set towards your goals. I remember we were doing therapy, and Arran’s goal was to be able to get up from the floor by himself, which is a really challenging goal, and we were sitting in this therapy room for at least an hour. And Arran was just practicing over and over and over again and I said, Are you ready for lunch? No, no, I haven’t got it yet. We need to keep going until I get it. And we had some amazing volunteers that said, Arran, can I give you a hand? And he said, No, this is HABITILE . I need to do it myself. So I would just have put it to such a credit to Aaron’s determination and his will to keep working hard until he achieved something.

Ben McAlary: Claire, thinking about those goals that Arran shared with us. How might physiotherapy support Arran in the future?

Claire Smart: Yeah, I think I’ve really got my work cut out for me, supporting a world champion. So definitely supporting Arran to keeping his training fresh and keeping things changing and evolving. We know, especially with our neuroplasticity, that we need to keep repetition and intensity and keep building things up and changing them and keeping them fresh. If I kept lifting two kilos at the gym, I’m probably not going to get stronger. See, I think that’s been a really big part and Tele practice being so fantastic because we can do so many different things over it and keep changing things and and supporting technology in that as well . Things that couldn’t be in person, a nd I can just send Arran some therabands in the mail and send him his programs. So yeah, it’s definitely continuing to change and evolve to suit what Arran’s goals are and to suit his increasing and improving strength as well.

Ben McAlary: Claire, just thinking about COVID and the pandemic that we’ve lived through. Do you think telehealth and virtual health as a whole has sort of improved thanks to the pandemic?

Claire Smart: Yeah, I think there’s a lot of things that we’ve learned, and in some way there has been some things that we’ve been forced to learn, but other things that have just been so fantastic that have come out of the time in lockdown and the things that we’ve realised, actually, we can do this over the computer. I don’t have to drive to therapy. I can do it in my own home because we know that the best outcomes happen in someone’s home environment and when they’re doing lots of practice at home. So being able to see into people’s environments where they’re doing the activity, so when I Tele practice Arran I say, are they some stairs over there, how about we go do some step up? Or, have you go t a step you can bring over. No, it’s the wrong height. Let’s go find something else. So it’s been really great to get creative with what we’re doing and realise that it doesn’t need to be a barrier. And it’s actually a huge enabler for some people, especially people that live far away from their access to services. Now they’re on the same playing field as everyone else. So definitely learning how creative we can be.

Ben McAlary: So Arran, you’ve shared some of your goals in regards to sport, but I’m really interested to hear what’s your goals regarding your professional side of your life? So tell me what’s what’s school like at the moment?

Arran Keith: Erm school is well, it’s definitely interesting with like home learning. But yeah, it’s been really good. And the school they’re really welcoming, like, oh, and really accommodating for my needs and stuff. So that’s been really good and now and last year I also got elected as school vice president. And em, yeah, I think it’s really good that the younger kids to get to see me up there with my walker and stuff and disability, because that normalises it, so yeah, and I also want to become Australia’s first disabled Prime Minister.

Ben McAlary: Can’t get a better goal than that. That sounds awesome.

Andy McLean: Arran, let me say you’ve got my vote when the time comes.

Ben McAlary: So, Arran, tell me, where do you go to school?

Arran Keith: So I go to a local primary school and an out of area high school that I got into and yeah, they’re both really accessible and they consult me. So my primary school , like I got a bathroom put in near my classroom and they consulted me about like what rails to put in, where to put them in, where to put accessible and go od things, in the bathroom, and I think it’s really good that they consult me, not like my parents which is cool.

Andy McLean: And if you think about it Arran, you’re leaving a legacy at the school, there right. So the changes that the school has made will help the kids that follow on after you with their accessibility needs as well.

Arran Keith: Yeah, that makes me really proud because I just want to make the world a better place for, like physically disabled and neurologically challenged kids like there are a few neurologically challenged kids at my school. But nobody physically disabled me, I’m the only one, so.

Andy McLean: So I’ve got a question for both of you. And it will require you to sort of cast your mind back over the last couple of years that you’ve been working together. How do you feel looking at where you are now and looking back at where you started, like how does that make you feel? I might ask you that first Arran.

Arran Keith: Yeah, definitely a lot of things have changed, but I think that I’ve definitely improved. Like, for example, it used to take me up to an hour to get to school and now it basically take 15 minutes, which is good because I’ve increased that strength.

Andy McLean: How do you feel when you think about the last couple of years with Arran?

Claire Smart: It’s just been amazing I mean, there’s some things that you can just never imagine in your wildest dreams. At the start of my working career, I probably never would have imagined working with Arran and seeing him achieve some amazing variety of things. It’s been really exciting to see so much progress as well, and really rewarding as well to see the pride that Arran has when he achieves his goals.

Andy McLean: So how do you feel you are perhaps stronger because of your cerebral palsy?

Arran Keith: I guess dealing with like bullies and things that bring me down about my disability, like there was one in year four that my teachers, they was really happy about the way I dealt with it. And also, another example about creative thinking is I play rugby league with my friends at school . And so I had to find out a way to kind of put the ball under my arm and put my elbow on the walker handle and then be able to run and score tries. And so really cool in a really good way to kind of figure out how I can do that.

Andy McLean: That’s really interesting, Arran, because we’ve done a few episodes in this series and so many people talk about the problem solving skills and the resourcefulness of people with disability. It just comes up again and again. Is that something that you think is particularly strong amongst people who live with a disability?

Arran Keith: Yeah, I definitely think so, because it’s like. As young kids, we watch our kids like our friends and stuff doing things that we think we can’t do. But I think people with disabilities, as you grow older, you can kind of find ways around things you can’t do to make them things you can do.

Andy McLean: It’s great, Arran. Thank you so much. And Claire, too. Thank you both so much. We’ve really, really enjoyed it.

Ben McAlary: Thank you. You’ve been listening to Cerebral Conversations, a podcast produced by Cerebral Palsy Alliance.

Andy McLean: To learn more, check out the show notes to this episode. Over at cerebralpalsy.org.au/ cerebral conversations.

Ben McAlary: And if you enjoyed the show, please rate or review on your favourite podcast platform.

Andy McLean: And to join the conversation, follow us on Facebook and Instagram.

Ben McAlary: Thanks again for listening!

The music for this podcast was kindly supplied by Ocean Alley. Check out the band’s music on Bandcamp or visit Ocean Alley

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