Spinal Cord Injury: Dom's Story

Everyone’s experience and prognosis after a spinal cord injury is different - no two injuries are the same! This can be extremely frustrating and confusing. But whether you have suffered a spinal cord injury, or have a friend or loved one who has, it may be helpful to hear the story and experiences of someone else.

Through our partnership with Northocott’s SpineCare Foundation, we met Dom Freestone, who tells the story of his C 5/6 spinal cord injury and life after, in his own words. Dom went from serving in the Royal Australian Air Force to being an advocate for himself and others living with disabilities - and he’s learned a lot along the way. There are 6 episodes, each focusing on a different aspect of life after a spinal cord injury diagnosis.

April 16, 2018

NARRATOR (BECCA): Hi there and welcome to In My Words, Jumo’s podcast series that brings the experiences of real patients directly to you. At Jumo we provide resources for children and families to understand, manage, and own their health.

For the next few In My Words episodes, we’ll be down in Sydney, Australia, where the Jumo Team has partnered with the SpineCare Foundation to focus on some very important topics around spinal cord injuries. Our local colleague, Kirstie, will be guiding us through these topics. Hi Kirstie!


NARRATOR (KIRSTY): Hi Rebecca!


NARRATOR (BECCA): Can you start off by telling us what a spinal cord injury is?


NARRATOR (KIRSTY): Sure - A spinal cord injury is damage to any part of the spinal cord or nerves at the end of the spinal cord. It often causes permanent changes in strength, sensation and other body functions below the site of the injury, and can sometimes result in paralysis.


NARRATOR (BECCA): Thanks, Kirstie. Now, we’re going to get into the experiences of one person, in particular, who was kind enough to share his story with us. I’ll let Kirstie take it from here...


NARRATOR (KIRSTY): Thanks, Rebecca.

Everyone’s experience and prognosis after a spinal cord injury is different - no two injuries are the same! This can be extremely frustrating and confusing. But whether you have suffered a spinal cord injury, or have a friend or loved one who has, it may be helpful to hear the story and experiences of someone else. Through our partnership with Northocott’s SpineCare Foundation, we were fortunate enough to be introduced to Dom, who tells the story of his C 5/6 spinal cord injury and life after, in his own words. He went from serving in the Royal Australian Air Force to being an advocate for himself and for others with disabilities - and he’s learned a lot along the way. Lucky for us, he’s going to share some of that with us!

 

DOM: Hi guys. My name is Dom Freestone, and I'm currently 34 years old. I have a C5/6 spinal cord injury, which I sustained when I was 23 years old and serving in the Royal Australian Air Force. So, at the time I was a diesel mechanic with the Air Force and I was down in Albury Wodonga doing my training to become a mechanic. It was a really hot day; me and my friends decided that we'd go to the Hume Weir dam and just have a bit of a swim and a relax, and we've been there all day having a barbecue and different things and it was getting late and getting a bit darker and I thought I'd go for one last swim just to wash off the sand off my legs. And I remember sort of jogging into the water, diving in, and then I hit something I didn't really know what it was. I don't really remember floating to the surface. I sort of came-to face down in the water and tried to turn myself over, but I couldn't actually flip my body over. So I knew I had done something pretty serious. My friends are on the beach at the time and they said they could see my shoulder twitching so they realized that I wasn't faking it, and they came and turned me over and kept me in the water. So luckily I was able to hold my breath that long. I think I did take in just a little bit of water in my lungs, which wasn't good later on.

They kept me still at the side of the water and didn't pull me around or move me too much, which is really important I guess--when you have a spinal cord injury that you don't move initially very much. I called an ambulance and the ambulance took a long time to turn up, so it was getting really dark and cold. Boats were going past and waves were washing past me and sort of hurting me a bit. Like, just the water movement was enough to give me a lot of pain. Then the ambulance turned up, put me in the back, and they closed the doors and tried to take off. But the ambulance was actually bogged in the sand, so my friends had to dig out the ambulance and push it out so they could actually get me to the hospital. And then I remember on the way to the hospital I had brand new board shorts on, which was my main concern at the time - I didn't really think it was as serious as it was. I remember them cutting off my brand new board shorts and I was devastated. And then I went into—I guess it was the Albury Wodonga Base Hospital. I don't know what it was called.

And they basically sedated me and I was out until I sort of came to the next day, when they were flying me from there to the Austin in Melbourne, where I was operated on and given a spinal fusion, which involved them taking a piece of my hip and fusing it with my spine and taking in all the bits of broken bone and fusing the bone and steel back together so that now I think the C4 to 7 is fused together. So I sort of have a limited neck movement and things like that.

And then I spent the next week in the ICU sort of recovering. It was pretty bad in the ICU so I spent a lot of time trying to cough up the fluid that was in my lungs and things. But because I had a neck brace on, I just had a spinal cord injury and couldn't move any part of my body it's quite hard to cough on your back when you can't move and you have really reduced lung capacity. So I had to get assisted coughs from the physios which was really hard. And then they had to use suctioning to sort of stick down your throat and suck out the mucus and things like that, so that was really difficult. But there were some really good staff that worked there. And I think I spent about a week on life support and about two weeks in the ICU, and then I was moved to the ward where I sort of just started. I guess that was the first steps to getting better.

That's where I first sat up in bed, in the ward, which is quite daunting after being on your back and having a spinal cord injury - to be sitting up again, because you know how fragile your neck is. It was the first time I'd had a wash so that was two weeks later and I can remember the nurse. I was on a bed still lying flat and the nurse took me into the shower and was showering me and I was talking away to her and she was quite attractive and young and I was talking to her thinking I was killing it and then I was like… it dawned on me and I said, “Am I naked lying here talking to you?” and she's like, “yeah,” I was like “Oh”. That's really off-putting. That was the first time that it ever happened to me. So that was really confronting, to have someone else washing you, like yeah it was normal for them, I guess, but for me it was completely alien, so that was really difficult for a long time to get used to being washed. And I do remember my Air Force friends turning up there one day, and I guess they were all very young so they were like 18 or 19. They turned up and they looked in the bathroom and I think there was a bit feces or something on the ground in the bathroom and they came out laughing and you know, just young kids. And I remember thinking that it wasn't very funny, but I guess people at that age don't really think about that sort of stuff.

So yeah, a lot of really harsh realities come to light when you have a spinal cord injury, and things that you might find funny before aren't so funny anymore. And then I remember another visit, so I was only in Austin for about three weeks. I think I was only in the wards for a week, but I remember a doctor coming into the room and he brought with him a group of students. They asked me first--they said is it OK if this doctor comes in with the students and talks to them about you when I was like yeah, that's fine. The doctor came in and he brought the students and they said oh you know this is patient Dominic or whatever and then he started to tell them about “He has a C5/6 spinal cord injury, this and that… Dominic won't walk again, Dominic won't do this again, Dominic won't do that again. You know, he probably would do this…” And he was really negative about the whole thing and I remember when they left, the students and the doctor, I just broke down, because that was the first time I'd really heard anyone saying this is a permanent thing. You always think that you'll get better from things--Even if other people haven't gotten better from a spinal cord injury, you're different and you'll get better. You’ll work hard and they don't know who you are so you'll get better, but hearing it from a doctor… I don't know. It just made it more real.

I did sort of fight it for a little bit trying to think, no, he doesn't know what he's talking about, but I think at some point you realise that it is permanent and you know, some people do get better, but they're really fortunate and it depends on the injury - it's not a matter of willpower or desire because everyone who has a spinal cord injury designs to get better and tries the hardest they can at that start.

And so from the Austin… my brother lived in Newcastle so I asked to be flown to Sydney to Royal North Shore Hospital to be closer to him so he could come and visit me more easily. They flew me out of the Austin in Victoria and to the north shore where I began sort of more therapy. It wasn't like rehab, but it was just more strength stuff. So at that stage when I moved to the Royal North Shore I still couldn't move any part of my body. So I worked a lot with the OTs there and the physios on trying to get movement in my arms, and I remember after being there for about a week I finally got enough movement to slide my hand up to my nose in bed and scratch my nose. I couldn't push it away from my nose but just to get my hand to my nose to scratch it was amazing. You don't know how satisfying that is to be able to scratch your nose after not being able to do it for three weeks. Yeah it's really great. And then I slowly got enough movement in my arms to change the television channel which is great instead of having to yell at the nurses all the time to change the television channel. And then I slowly gained enough strength to be able to feed myself. But the hospital food wasn't great. So I actually lost a lot of weight in that first month so I went from 103 kilos the day of the accident (and I was pretty fit because I was in the air force) to 78 kilos the first time I was weighed when I was at the Royal North Shore, which was quite a shock to me. I didn't realise that I'd lost so much weight. But you just lose weight from everywhere. I remember looking at my hands and even my hands had lost the muscle out of them and things like that, and you don't think there's much muscle in your hands. But when you look at it after you've had spinal cord injury it's amazing how much muscle you lose.

And then from there I started getting hoisted into commodes and they started showering me in commodes rather than on flat beds. And that was sort of confronting too - sitting up looking at someone and they were also brushing my teeth because I didn't have enough strength to brush my teeth. And that's also really hard, I find, having people brush your teeth because they don't do a very good job. It must be hard to do on someone else but you just find that yeah they don't do a great job, which is quite frustrating. Yeah, and then, like I said, it's really embarrassing and I remember I actually had a nurse looking after me one day, and I remember looking at her and like she looks so familiar to me and she's in the shower with me showering me and then she's like, “Did you go to Woolgoolga high school?” And I was like, “Yes, I did go to Woolgoolga high school,” and she's like, “Oh I was like two years lower than you.”

And I'm like oh my gosh. And then yeah she was actually living in Sydney with another girl that I knew so that was at first quite confronting but then she used to bring me dinners and they brought me a little TV to watch and things like that so it really ended up quite nice knowing someone in hospital. But yeah first it was really confronting. And then from there I went I guess into how to transfer onto a plinth in the hospital, which was great--to be able to transfer again--because that was the beginning of being able to transfer into cars, which is something I've learned later on. But yeah, to get that strength in that initial first three months is just learning to get that strength in your arms and be as fit as you can possibly be and stable before you go off to rehab.

So then I got to rehab at Royal North, I mean not a North - rehab was a Royal Ryde Rehabilitation (Moorong, they call it). And I remember going there and it was quite daunting again being changed from one place to another because you just get used to everyone. And I went straight into a room with four people again, so that was hard being in a room with four people. But we were all fairly young so I think the other three guys--there was a twenty two year old who had an accident on their slip and slide. So, he had a slip and slide, he was from a country, had a slip and slide that he'd built going into a dam. And he did a big Superman dive onto the slip and slide and just the force of him hitting the ground snapped his neck and left him the same level as me: C5/6. And there was another guy, Mark, who was 17 and had been playing rugby and a rugby scrum collapsed on him and he broke his neck. And another guy called Mick who had a motorbike accident which left him in a wheelchair. So he was higher than all of us but had sort of a bit more movement in places, like he could actually stand up a little bit which is interesting because I guess every spinal cord injury is different. So just because you’re injured at C5/6 doesn’t mean you'll have the same movement as someone else who's injured at C5/6. So there are other people, like I met a guy there who was C2 I think he was. So he wasn't able to breathe on his own, but he was able to, with assistance, stand up and walk a few steps. So he couldn't move anything, but he could stand up and walk which was shocking to me that it could work like that.

And I met another girl who was in there from when she had a UTI, which she must have let get out of control or somehow it got out of control and ended up infecting her spine and she woke up one morning with a spinal cord injury from a UTI. So there's so many different ways it can happen and you just, you never know when it's going to happen and it seems to be I would say that 80 or 90% of the people in those rehab places were young - from the ages of 18 to 23, 24. There's just so many young people in there. I remember talking to one of the nurses about it and asking her, “Why are there so many young people in here?” And she said it's because when you're young you take risks and you're just more likely to have an accident like that. And even more so than the girls, boys take a lot more risk so there’s, I think, for spinal cord injuries, I think it's around 80% of the people who have spinal cord injuries who are boys which is really scary. It's just because we take silly risks. So then after that first sort of couple of weeks of getting used to the rehab place, I ended up going to physio as much as I possibly could. So I was there whenever I had an appointment; I was also hanging around there if no one else had an appointment so I could take their appointment and just try and get as strong as I could get so that I was able to do as much as I could. And then working with the OTs on things like tenodesis grip.

So a tenodesis grip is something that C5 quads use to pick things up. So I can't actually move my fingers, so when I try to pick something up I have to actually move my wrist up and that pulls the tendons in my finger towards my palm, which I can use as a loose grip. So that's something I thought at first when I heard “Oh you you've got wrist movement.” I was sort of a bit angry, like, oh wow - wrist movement - that’s great. But you know, when it came a few months later, when I realized how important that was--that wrist movement, the difference between not having it and having it--I was so thankful to have that movement to be able to pick up things and feed myself and do different things that, you know, I would have struggled with without aids and things, if I didn't have that movement. So yeah that was massive, to be able to get that every little bit of movement. And I worked with the OTs on frustrating little tasks, like trying to pick marbles up out of bowls of rice. When you don't have any grip trying to do that, it’s quite frustrating. Playing Jenga. Doing jigsaw puzzles. Anything that you were sort of interested in just to try and get you moving and using those things was really good at the start there. You really make big progress in rehab and I think it's really encouraging when you make progress, because you're not just stagnant sitting there not going anywhere. So that was amazing in rehab and the staff there were so good in helping me move along and develop all of those things.

And then I ended up leaving Murong after I was in the hospital in rehab for a year. So Murong: I was there for about 10 months or so. Then I moved back to Newcastle to be closer to my brother. I thought that life when I moved back to Newcastle would be a lot like life before I had the accident, so I thought my friends would be coming around all the time, and we'd be going out to pubs, and it would just be like old times. But I remember the first night getting back to Newcastle and thinking there'd be some sort of surprise party or dinner or something for me, and I got back to Newcastle to the apartment that I was moving into and there was no one there. It was just me in an empty apartment that was already furnished which was really difficult. I can understand because you know people are working and doing things, but yeah, it was really disheartening to get back to an apartment and just be sitting there on your own and realise that this may be what my life is going to be now. And then I spent a while just doing nothing—going to appointments in Newcastle, doctor's appointments and different things like that and physio appointments.

I started doing a TAFE course just to try and keep myself busy, but I found the taxis impossibly hard in Newcastle to be relied upon - like they'd sometimes turn up 40 minutes late and I'd say to the taxi driver, “Well it's no good now because my class is half over,” and they'd sort of get annoyed with you and you’re like, you know it's not my fault you're here late, sort of thing. So that sort of put me off going to TAFE for a bit. Plus it was really hard in that early stage because I wasn't strong enough really to get around in my manual chair yet. I found that I didn't like to hop in my power chair - I felt like there was a stigma around the power chair and how people treated me when I was in it. I felt like in my manual chair people were treating me like just my legs didn't work, whereas in the power chair my brain didn't work—[that] sort of thing. So it was really a big difference between the manual chair and a power chair. So when I’d go to TAFE in my manual chair I would wait out front on the footpath, the taxi driver would come push me into the taxi. And then at the TAFE there was actually someone who the TAFE organised to help me, and they'd meet me at the taxi, push me to class and I’d do the class and they’d push me back again. So I really was not very functional but I just didn't like being in a power chair at all.

So I think if I could pass on some advice to people that were going through that early stage of getting home and recovering from rehab, I would say it would be to take your time. Don't let people pressure you into doing things if you don't feel ready to do stuff. You'll know when it's time for you to move on and start doing things, and don't feel like you need to straight away start doing courses or start living your life again. It takes a long time to get better from something like this. It took me I think six or seven years to go to the shops on my own after my spinal cord injury to buy something for myself because I was so panicky about getting things out of my bag, and that's fine. But yeah it's just a long process and some people might do that in the first year, but for me it was just something I wasn't quite comfortable doing. I think a lot of people have an expectation of what you should be doing and how quickly you should be getting better from things, and I just think that they don't know what it's like. Just take as much time as you need to settle in and get used to life again.

 

NARRATOR (KIRSTY): Thanks to Dom for being so open and honest about his experiences, feelings and struggles after his spinal cord injury. Life can change in an instant. You may feel like the world has ended, like you’ve been dealt the absolute worst hand, but life has a way of taking you by surprise, and showing you how strong you can really be. Dom is a perfect example of how this realization can take a lot of time.

Dom decided to become an advocate and use his experience to help others. For some, this may never be the case - and that’s ok. Everyone copes differently, but one thing that will always remain important is educating yourself. A great place to start is with Northcott’s SpineCare Foundation. They provide resources and support for children and families impacted by a spinal cord injury. Visit www.northcott.com.au to learn more.

Over the next 5 episodes, we’ll be talking with Dom and Dr. Adrienne Epps, Senior Staff Specialist and Head of Rehab2Kids at Sydney Children’s Hospital Randwick about health and lifestyle, relationships, self-care, mental health and independence. Stay tuned!

NARRATOR (BECCA): Thanks for listening! Interested in hearing something special - or want us to help share your story? Reach out to us, we’d love to hear from you! See you next time!

The health information contained in this Podcast is provided for educational purposes only and is not intended to replace discussions with a health care provider.

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