Spinal Cord Injury: Self-Care and Independence
Dom, who suffered a C5/6 spinal cord injury when he was 23 years old, and Dr. Adrienne Epps, Senior Staff Specialist and Head of Rehab2Kids at Sydney Children’s Hospital Randwick, talk to us about self-care and independence. Though taking good care of yourself may often require the help and assistance of others, it’s important to take an active role in your care and do what you can to regain some of the independence that may have diminished since experiencing an injury.
Listen in as Dom tells us about a day in his life and the routine he follows with the help of his care team.
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.
NARRATOR (KIRSTY): Hi there! It’s Kirstie, back here in Sydney, Australia, and for those who haven’t listened to our previous episodes, we’re talking about spinal cord injuries. We’ve had the pleasure of hearing from Dom, who suffered a C5/6 spinal cord injury when he was 23 years old, and Dr. Adrienne Epps, Senior Staff Specialist and Head of Rehab2Kids at Sydney Children’s Hospital Randwick.
In the last few episodes, Dom shared with us his story and his experiences with health and lifestyle, mental health and relationships since his spinal cord injury. In this episode, we’re going to be focusing on self-care and independence. Though taking good care of yourself may often require the help and assistance of others, it’s important to take an active role in your care and do what you can to regain some of the independence that may have diminished since experiencing an injury. That’s what we’re going to talk about today.
Listen in as Dom tells us about a day in his life and the routine he follows with the help of his care team.
DOM: I would describe the health care that I now get as...it's really routine. So it really dictates how my life goes and functions. So, every morning I have two nurses turn up. One turns up at 7:15 and she'll go and make me a coffee, because coffee is good for your bowel - to get your bowel moving. So she'll turn up earlier than the registered nurse and give me a coffee. I'll drink that and then 15 minutes later at 7:30 the RN turns up. She'll disconnect the urine bottle, which is attached to me, like an overnight bottle.
And then from there she'll go and empty that out and sterilize it and then come back into the room and hopefully I've finished the coffee. They'll take the wedge out from underneath my legs, which is there to stop pressure sores and things like that on my ankles, and also the bolster at the foot of the bed which stops foot drop. So those two things are really important. And I also have a... it's like a surfboard strap, a surfboard leg rope, that's attached to the bed which I strap onto one of my legs because it's quite jumpy at night time, and it keeps me awake, and it just jumps around like crazy if it's not strapped down. So I have to get them to undo that as well. And then they will put the sling behind me, hoist me out of bed into the commode, I'll go into the commode and then into the bathroom and they'll give me an enema, and then hopefully that enema works.
I find that that's one of the most frustrating things, is trying to get a good result every morning and it sounds really bad but it's just such a pleasure when you get a good result and you know that you're not going to have an accident during the day or at night time, sort of thing. So that again is where diet and watching what you eat and drinking enough water; I know the nurses tell you a lot to drink plenty of water, but it is really important to drink plenty of water and eat the right foods because you need your bowels working properly if you're going to live a proper life.
So then once my bowels have gone I'll go into the shower by myself and I'll start showering myself. I'll shower, like, my arms, my upper body, under my arms, my legs or the tops of my legs that I can, and anything that I can sort of reach. Do my hair and my face, and then I'll have to call out one of the nurses and they'll come in and wash the lower parts of my legs, my feet, in my groin area, genitals, underneath on my bum. They have to wash that, as well, fairly well. Then after that they help me get dried, and then I go back into the bedroom where I am hoisted out of the commode into bed. And they will grab, like, a blow dryer - I use a blowdryer to dry off, like, in my groin and anywhere water could sort of build up. Because I find that in your groin and in skin folds and things like that you can get really red and irritated skin and the blow dryer seems to help that a lot. But sometimes I still get, sort of, areas that do get quite red and sort of infected and fungus-y. I guess it's fungus or bacteria, and I find that Papaw cream is really good for getting rid of that. But yeah, keeping it really dry and making sure that the nurses dry those sorts of areas is really, really important and something I didn't learn until I sort of was in the community for a little while.
After that they'll clean the catheter site. So I have suprapubic catheter, which is a catheter that is above your pubic area that goes straight into your bladder. That was quite confronting, to actually get that done when I was in hospital, because I had a indwelling catheter that just goes through a penis when I was in hospital, but that's not a long term solution. So I remember when they suggested that I get a suprapubic catheter, I remember Googling it and being horrified and thinking I'm not getting one of those things, and even asking the doctor, can it be reversed if I get better? Then I can reverse this thing? And he was like, "Oh, yeah."
And in the end I can see the real benefits; it's so much cleaner and easier to keep clean and things, than the other sort of catheter was. As well as it drains a lot better. It's just a better option and, you know, it took me a while to come to the realization that the other way was just not an option for me. I even tried self-catheterization, which was completely unrealistic to think that I could do something like that, but I guess when you're in rehab they have to let you try these things out to know that they're not realistic. So I couldn't even get my pants undone enough to do something like that, so yeah it was just not an option for me to do self-catheterization at all either. So they'll clean it with an alcohol wipe and then blow dry it just to keep it nice and clean because I have had a few really bad infections that have sent me to hospital with that, with blood infections. And yeah, I had a temperature one time there of over 40 with a blood infection from the catheter side. So really important to keep that as clean as possible and stop people touching it.
Then they'll strap the catheter onto my leg and then put on my stockings. I have compression stockings in wintertime, anyway, just to keep the swelling in my feet down because I have oedema in the legs so my feet swell up really big. Or not really big, but big enough that it's an issue. So I wear the TEDs in wintertime and then they'll strap the leg back onto my leg and get my underpants - pull my underpants up as high as I can get them, roll me over, blow dry my bottom again (so keeping those areas nice and dry), pull my underpants up. And then they'll go and get my jeans, put my jeans on for me and then I normally sit the bed up, put the bed down on the ground and then my dog will hop up and I'll cuddle my dog for about five minutes and then they get the hoist and the wheelchair in the room and hoist me out of bed into the wheelchair. And then from there the RN leaves and the AIN stays and she'll make me breakfast and lunch and help clean up the mess that's been made from the morning.
NARRATOR (KIRSTY): So this is a typical morning for Dom - a structured care routine with a mix of self-care and care by his nurses.
DOM: And then at nighttime the AIN will come back, maybe not the same one, but from the same agency. The AIN will come back, clean up the mess I've made during the day, help with, like, dinner if I need them to, and then she'll help me into bed. And so at nighttime I slide transfer into bed, I don't use the hoist. So I just slide across on a slide sheet and slide board into bed. They'll do the reverse: I take off my shirt and jumper, my pants and underpants and then they'll clean the catheter site, put the wedge underneath my legs, strap my leg down, bring in my CPAP machine. So that's another thing that I've found since my accident (it's probably related to weight, as well) is that I need a CPAP machine every night to get a good night's sleep, because I just... I don't breathe well enough at nighttime in my sleep. I was waking up really tired and I had a sleep test and they found that my oxygen levels were dropping down to 56% at night time in my sleep and I actually stopped breathing around 60 times a night when I don't have the CPAP machine. So really severe sleep apnea is what I had and it took me years to get around to actually getting those tests done and figuring out that is what I had. That actually causes another thing which I think is called nail clubbing, which I found out later, which is your fingernails sort of round off. I was wondering once upon a time what happened to my fingernails and that's apparently from oxygen deprivation.
So yeah, they'll put the CPAP machine there and then also a camel pack so that I can have a drink during the night. A camel pack is one of those things that you might see people who are running or walking have on their back just to have water on the go. So I find that's really useful to have stuck onto the rail of the bed so when I'm lying down I can just reach for the tube and suck on it rather than having to sit up and hold up a bottle to myself. And then they'll leave. Oh, I connect the urine bottle up and then they'll leave for the night and I'm on my own from 10:00 at night until 7:15 the next morning.
So it's really a very routine lifestyle that I have to live by. I can go out and see things, but it takes a lot of organisation to have to organise nurses to come and visit you. And also the next morning it's not really convenient for me to say, "Oh, I don't want to get up until 10," because my bowels get into a routine and they want to go to the toilet at 7:15 or 7:30 every day. So you can't just change your routine. You have to live a pretty routine lifestyle, which is not all bad. I sort of I love my routine now - I'm a very routine person, but it's really difficult to get used to. And not being able to really nap during the day is hard. Like, if you can't get into bed on your own just having to sit in a wheelchair all day is really difficult. It's a really difficult skill to master - sitting all day. I don't think people who walk around realise how hard it is to sit all day until they go on a car trip somewhere and then they realise it's not easy to sit all day. Yeah so it's really, really difficult, I guess, living a normal life and having all of those care requirements.
NARRATOR (KIRSTY): From the time of his injury, Dom has learned a lot of things about what he needs in his day-to-day routine and things that are helpful for him - for example, his camel pack water bottle at night. It can take time to figure out what works best for you, and as Dom experienced, it can be difficult to get used to at first. Now, Dom is very used to his routine and quite likes it; but this is his routine, and the routine of someone else with a spinal cord injury might be a bit different. We asked Dr. Epps - what are typical care requirements for someone with a spinal cord injury, and what is important to keep in mind?
DR. EPPS: Common care requirements are very important to consider day-to-day, and these cover things like bladder and bowel management to establish regular emptying of the bladder and bowel; staying dry and avoiding accidents during the day or at night and when out and about; management of pain and spasticity might require medication or positioning; pressure care and skin care are really important.
As Dom said, it's important to avoid having moisture staying on the skin, which can result in breakdown of the skin or infections. People with a higher-level spinal cord injury may have respiratory care requirements. They may have breathing problems and require a CPAP, particularly at night, or cough assist devices to help them maintain good respiratory health. Other care requirements, medications that might be needed, and of course nutritional needs as we've already discussed.
Health maintenance is incredibly important for avoidance of complications related to the spinal cord injury.
NARRATOR (KIRSTY): What are some examples of these complications?
DR. EPPS: Developing pressure ulcers, urinary tract infections, kidney problems which may result in the need for hospitalization (and we really want to try and avoid that as much as possible). Effective management of continence of bladder and bowel is important to be able to feel confident participating socially and getting out of the house and getting out and about.
NARRATOR (KIRSTY): Though there are a lot of daily steps to take when it comes to self-care, all being done at home, it’s important not to forget the aspects of self-care that are not so medical; not part of a daily routine. For Dom, self-care is also about getting out of the house and into the world, and realising that the world is still there and you can be a part of it.
DOM: So taking care of yourself, for me, is about (because I can't exercise a great deal) it's a lot about eating right, exercising as much as you can and trying to be motivated to do that. But also, it's about getting out of the house. It's about trying to interact with people, getting off the computer, getting off the phone and getting out into the world and realising that it's still there, still moving along and you can be part of it. You don't have to be locked up in your little room like some sort of freak. You can get out into the world and still contribute and be part of it. And that's really important for your health, is to contribute whether it be volunteering somewhere or actually doing paid work - it doesn't really matter for me anymore. It's just so important for your mental health and your physical health that you just don't realise the benefits of getting out and interacting with people until you've been isolated from them for years.
NARRATOR (KIRSTY): This feeling of isolation can make it hard to want to get back out there, but maintaining independence was and is key to Dom’s mental health and happiness. Doctors agree that keeping social is essential.
DR. EPPS: The other thing that's really important in terms of self-care and independence is what we call social capital. That's the importance of social networks and maintaining those networks with peers, school, work, workplace, family, and friends. This is important because it helps with opportunities for providing meaningful participation. Opportunities for work, opportunities for leisure and recreation, getting out of the house and being involved in meaningful activities - this has a really big impact on long term quality of life and general outcomes after spinal cord injury.
NARRATOR (KIRSTY): So not only is maintaining your social life important for happiness, it has an effect on overall health outcomes following a spinal cord injury.
If you’re wanting to gain more independence, or going through the process of becoming more independent, here’s Dom’s advice:
Dom: I think if you're if you're going through the process of looking to become more independent, I think you've got to be wary that it is a process and it does take a long time. It's not something that happens overnight; like, all the things I've spoken about have happened over an 11-year period. They didn't happen very quickly and it's extremely frustrating sometimes and things move so slowly. And, you know, you'll have times where you might fail or you might go to TAFE, like I did, and think that you're a failure because you haven't been able to succeed and pass the course or do anything. But I think the fact that you are putting yourself out there to do those things is really positive.
Like I remember hearing a doctor talk about parenting books and there was a parent who rang up and said, "I've bought all these parenting books, do you think they'll help me to raise a better child?" And the doctor said, "I don't think the books will help you at all, but the fact that you care enough to go out and buy parenting books means that you're going to be a good parent." So I think that's the same with someone who is in a wheelchair - if you're motivated enough to get out and start doing things, I think that's enough to tell you that you're going to be okay and that you're going to be able to progress with your life and you're going to be able to contribute. You are able to do things - you'll be able to go back to work. You just need to find that self-confidence and it just takes time to get back.
NARRATOR (KIRSTY): When it comes to self-care and independence - there is a balance. A balance of relying on others for help and of being independent. As with Dom’s experience, it can take a lot of time to figure out the right balance for you and to identify all of the things you need to customize your day-to-day routine appropriately.
For resources and support around self-care, please visit the SpineCare Foundation page on Northcott’s website - you can find the link in today’s show notes.
Thanks, as always, to Dom for allowing us to taking us through a day in his life. And thank you to Dr. Epps for her insight and suggestions around self-care and maintaining independence after a spinal cord injury.
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.
In My Words is produced in New York City and distributed worldwide.
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