Anna-Marie: (0:03 - 0:33)
Hello and welcome to SpineCare's 40 Voices, a series of podcasts sharing stories about spinal cord injury and how each one living with it and their families and communities celebrate and experience their best lives. You'll hear myself, Anna-Marie Reyes as executive producer, Marlene Even and Oscar Byrne as audio producers from radio 2SER-FM speaking to people living with spinal cord injury on behalf of SpineCare Foundation in Australia.
Oscar: (0:37 - 1:37)
Hello, welcome to SpineCare's 40 Voices for 40 years podcast, a podcast about childhood acquired spinal cord injury and dysfunction produced by 2SCR Radio for the SpineCare Foundation. We'll have families to join us to swap tips and share their experiences on plenty of topics such as preparing for school, childhood rehabilitation, bowel and bladder management, moving out of home, exploring sexuality and physical and mental health, just to name a few. So lots of big topics but also the everyday things.
I'm your host, Oscar Byrne. I'm an audio producer at the community radio station 2SER 107.3. In this episode, we'll be learning about what you can expect from this podcast series and hear from the parent of Callan who had a spinal cord injured at the very start of his childhood. To start this podcast series, we're going to hear a chat that producer Marlene Even had with SpineCare chairperson, Sam Frane. Hi, Sam.
Sam:
Hello.
Oscar:
Now, SpineCare Foundation have teamed up with 2SCR Radio for this series to mark the 40th anniversary of the SpineCare Foundation. Firstly, congratulations.
Sam:
Thank you.
Oscar:
Sam, did you want to tell us a little bit about SpineCare and why you wanted to create this series?
Sam:
Yes, of course. So the SpineCare Foundation focuses on research and education that supports children with spinal cord injury or dysfunction and their families. We wanted to do the podcast series as a way of celebrating 40 years and what better way to celebrate than sharing 40 stories from our community to reflect the work that we do.
Oscar:
You mentioned their spinal cord injury and spinal cord dysfunction. What are the differences between these two terms? We're going to hear a lot of these two terms throughout the podcast.
Sam:
So a spinal cord injury is a term that people in the community use all the time to indicate damage that's happened to the spinal cord as a result of an accident, an incident, or an event. Spinal cord dysfunction is the same outcome, so it's damage to the spinal cord, but it happens through disease or surgery or other causes. We are going to be covering a lot of topics and I did want to take a moment to acknowledge all the families and the SpineCare community that contributed to this podcast by letting us know what you are interested in talking about.
Oscar:
Sam, are there any topics that you want to highlight or subjects that a lot of people suggested we unpack? Yes, the vast majority of people were really interested in hearing about the clinical trials and the research in this space. So I think those episodes of the podcast are going to be really, really interesting and exciting.
Sam:
I think other people also spoke about wanting to hear about families and what it's like going on holidays with a loved one with a spinal cord injury. And I think that's probably because of the year we've had in the pandemic. People are just keen to learn more so they can get out and about visiting new and exciting places.
Oscar:
Absolutely. And there's nothing better than getting that feedback from community and from people who know exactly what the experience is. So there is going to be plenty of topics that we'll be chatting about with young people with spinal cord injuries, their families, as well as hearing from academic and medical experts. So I think the richness of the podcast series comes from having a voice from every part of the community. So it doesn't matter what touch point you have with spinal cord injury and dysfunction, your voice is captured and it's being heard and shared through the podcast. Thank you so much, Sam, for joining us.
Sam:
You're welcome.
Marlene:
We are joined now by Gillian Morland. How are you?
Gillian:
Hi, good. Thanks, Marlene. Thanks for having me on your podcast.
Marlene:
Now, before we chat today about spinal cord injuries, could you tell us a little bit about yourself?
Gillian:
I'm the mother of a spinal cord injury son, Callum, who's now 18 years old. And he sustained his injury at a bar just before his fourth birthday. And I have two other older kids as well.
Marlene:
And we just spoke with Sam, who's a spine care chairperson. And we were talking about all the various topics that we're going to go through in this podcast series from starting school to rehabilitation, health, physical health and mental health, dating, family holidays is set to be a really popular one as well. Could you share with us a challenging moment that you experienced as a family?
Gillian:
I think for me, challenging would be everything from the minute of diagnosis through to just everything else that goes with it. I guess the biggest challenge I had for us as a family was actually when Callum was diagnosed and just not knowing which way to turn and what comes next. That was very challenging. Not knowing the unknown, not having been in that situation before, and just not knowing what to do next. And just as him and the family as well.
Marlene:
So many challenges along the way, as you said, just from booking a holiday to attending school, lots of little things add up. There's no one particular massive challenging time, just lots of little challenging times that builds up over time. And just not having resources or support available, particularly in the early years of Callum's life. Thank you for sharing that. And you mentioned there sort of all the information that comes at the beginning of the diagnosis. Because from the moment of diagnosis of a spinal cord injury, throughout all the milestones of a young person's life, there's so much information that you need to navigate. Medical advice, financial advice, rehabilitation, the bureaucracy, personal advice, all this information coming from different angles. How do you navigate that as a family?
Gillian:
It's a very lonely time. And it's a very scary time. And it's a time of a lot of unknowns. And for us, with Callum, it wasn't just the spinal cord injury, but he was also diagnosed with a spinal cord tumor, which was very unknown to the medical industry at the time. And so it was trying to navigate that diagnosis together with the spinal cord injury. So it was really complex for us at the beginning. I would say, though, the North Coast Disability Team made a huge difference and an impact in our lives in trying to help with that. And I just wish that there was more of that available and more support. We kind of needed someone to hold our hand to navigate the journey for us ahead of time.
Callum went to an independent school. He was the only kid in a wheelchair with a spinal cord injury. So that was really challenging for us as well. The school didn't know how to deal with him. He had a lot of needs that needed to be met. He was mainstream. We found that there was a lot of support for kids in wheelchairs, but with mental disabilities as well as spinal cord injuries, but where they were in wheelchairs. Whereas with Callum, he was mainstream. So there wasn't a specific setup for him at a specific school. And there was not a lot at the time for his age around other families that we could connect to or any information like your podcast and things like that, which would have been really helpful at the time.
Marlene:
And for families listening, what's some advice you'd like to pass on?
Gillian:
Definitely get support. If it's possible, get involved with another family, find another family, families that are going through the same thing. Information, get as much information, listen to podcasts and just information so that you're able to understand what's going on better. But my number one thing would be support with other families for sure.
Marlene:
Thank you, Gillian, so much for joining us and sharing your personal experience.
Gillian:
I thank you for having me, and I hope that it can help just one other family.
Oscar: (9:06 - 9:40)
You've been listening to SpineCare's 40 Voices for 40 Years, produced by 2SCR Radio. 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. Our next topic will be about understanding your spinal cord injury and ways that parents and carers can support children to understand the injury. I'm your host, Oscar Byrne. Thanks for your company.
Anna-Marie: (9:47 - 10:04)
In this week's podcast, you just heard the voices of guests Sam Frayne and Gillian Moreland speaking to radio 2SER's audio producers Marlon Evan and Oscar Byrne, and ending this week's podcasts. I'm executive producer Anna-Marie Reyes, and see you in the next podcast.
