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Q&A: What's your number-one day-to-day living problem?
Daily Challenges After a Spinal Cord Injury
People living with spinal cord injury have daily living problems specific to paralysis. Many report bowel and bladder management as an inconvenience, as well as skin inspections for pressure sores and dealing with neuropathic pain.
Others are concerned about finding reliable caregivers to help with activities of daily living such as personal hygiene, bathing, grooming, and for higher levels of injury, eating. Many get upset when faced with architectural barriers or frustrated over lack of access to adaptive transportation.
We asked 100 men and women to share their personal experiences about everyday life after paralysis. Here are their most common problems:
Number-one day-to-day living problem—pressure ulcers, a fear of. I lay in bed only because there’s, you know, you have to develop a sitting tolerance, and I’m always fearful of pressure ulcers. And if you don’t take care of something like that, I’ll tell you the reason why, I spent a year in bed because I had a stage two-stage three pressure ulcer, and it took me a year to get it healed. A year mind you. One day up a week, going back and forth to the doctor. So now I’ve vowed never to get another one again. And there were 15-16 years; I have not had a second pressure ulcer on my bottom side, only because I will not allow it to happen to me. I will not allow it to happen to me again.
I think we just have less time. Now, it’s getting better, now I call it our “new norm,” getting back to doing things. This summer, we actually went down and met my brother in Virginia Beach on the outer banks. And, the goal was to get him in the ocean, and we got him in the ocean.
Education. Well a lot of children where I'm from, they don't really see education as an option. I mean, they have no clue that it's about everything in today's society. Sooner or later, you're going to need a master's degree just to work at McDonalds, you know. But, as I, the lack of education that I got when I was a kid is affecting me now. And, I'm by no, by no means; I'm not stupid at all. The things is, certain things I didn't learn when I was a kid, like math. As I got older, and I wanted to go to college, English, I got straight through, but math, I had to take, like, eighth grade math, things like that. It was just, it was just more, more time than I really wanted to give it in, you know, at that point. And, I wanted to go to college, but it kind of setting me back knowing that I have to take all these extra classes just to get to a point that I'm already supposed to be if I would have just learned when I was a kid.
That he can’t change a diaper; his hand function doesn’t allow that right now!
You need to allot yourself more time and you need to plan ahead, and that’s really, really hard to do. And, when you are dependent on other people for assistance, that’s got to be part of the picture too. And so, just trying to figure how I’m going to get everything done in the allotted time that I have is probably my biggest challenge.
My spasticity has increased, my pain has increased. Energy level is still good. You know, going from manual to power chair, and power chair to power chair that has more features on it than I know what to do with to kind of compensate. I mean I can put this chair on a lot of different positions to reduce the pain. Because I’m one of these “I do not like taking anything kind” of guys. I do take something for urological reasons to help me pee because I am trying to avoid having to do anything invasive. So, I think my number-one every day, you know, it’s still that managing everything, it’s how long things take, or it’s the kind of help you need. If there’s one change, then it starts a series of domino things. So, it’s a constant management for me. Personally, every day you’re managing and sometimes that can be tiring, I mean, that takes a lot of energy. And you can’t let it, as you’re well aware, you can’t let it flow over, and into someone else’s life because they got their own series of things. And so, you can’t just let go, you still have to be responsible for yourself, but it’s hard. I mean sometimes I just want to say, “can you just handle this?” “Can you just do this because I don’t really want to do it anymore.” But to maintain my relationship, and the balance my wife and I have, or it’s something I have to do and sometimes it just sucks.
Yes, we need to make our home more accessible—like a roll in shower, just the widening of some doorways would be really wonderful. In the kitchen, just lower cabinetry, or just other ways in the kitchen where he would be able to act independently. There are certain things he can do on his own right now in there, but I know he would do more if our home was more accessible.
I struggle with my bladder incontinence and it’s probably the number-one thing that has always plagued me. I’ve gone through various medications and/or prescriptions to address that. It is managed now, it is manageable, but at the same time, it’s something that I’m constantly aware of, and constantly preparing to ensure that I stay prepared for.
The number-one problem I have day-to-day is with bladder management. I have a suprapubic catheter that empties into a light bag, and I get assistance emptying it out when it gets full. And being able to do the emptying of it on my own is something I’ve been practicing, but not—I don’t have it quite nailed down yet, so I do need assistance with that. So, I feel like that kind of keeps me on a short leash sometimes if I don’t have someone around to help me out with that, but it is not an impossible thing to surmount. It doesn’t limit me too terribly and I am practicing on being able to do it on my own. So, I say at least for that problem, it isn’t detrimental to my lifestyle.
Time, there's never enough of it. You know, it takes me a good two hours to get ready in the morning, and then it's working all day and then I come home and usually work some more. So probably time, I could always use a couple more hours a day.
Stairs, in one word stairs. I keep trying to figure out how to do them and it just doesn’t ever seem to work. Other than that, I really don’t have a lot of problems with much of anything.
Having enough time in the day. It’s definitely harder because it does take Ryan longer to do things, and so everything that we want to do together is just going to take a little bit longer. So, we just have to be better time managers basically. And then give ourselves space to, if that doesn’t work out the way we want to, or we’re late, just kind of be like, “okay, well, I guess that’s just how that’s going to be.” And it’s setting expectations for ourselves too, that just helps us kind of navigate the time constrains of having a spinal cord injury and having a spouse with a spinal cord injury.
Maybe getting around and getting in places, or, like, having to check, like, every website to make sure something is accessible, that when I go there, you know. Or, not being able to go to my friend's apartment, not being able, to yeah, to just, you know, the—accessibility concerns, really. Like, I just can't take the train, so I have to leave an extra 45 minutes to get somewhere. So, planning would be my big thing, I guess.
Well, my husband mostly says, you know, like a big treat is going to a movie, just he and I going to a movie. It used to be that wasn’t that big of a deal, but it is now. Our Tuesday nights are our date night to watch a certain series on TV.
He does not like for me to control everything. He also tells me that I have to stop babying him so much, and I tell him that’s my job. That’s what I’m here for is to literally control life. And he does not like that. I tell him “well, get over it. I’m going to control everything.” That’s it. We make jokes of it.
Spasms, spasms, spasms. I take my medication like I’m supposed to, I watch what I eat, but no matter what, every night I still get woken up, or get shaken up at, like, 3:00 or 4:00 am in the morning with spasms, and there’s nothing I can do about it. I can take more drugs, or I can have a baclofen pump put into me—I don’t want to have any of that machinery in there because it’s just another hassle, and you can get infected, and all that stuff. So, it’s just a major inconvenience if I have to get up in the morning to, like, stretch your legs out, put them straight, and hearing the hips pop, too. That just kind of makes my skin crawl when it happens. I can’t feel it, thank God, but when I hear it, it’s like, “ugh.”
I think that I have adapted to the wheelchair. Getting from here to there, sitting, doing weight shifts, and taking good care of my skin. I’m okay with that. The way that I manage my bladder and all of that, I’m okay with that. I still don’t like digital stimulation to empty my bowels, but I stay healthy, so I do it.
I had different dreams for the future, for my wife and for myself, for my child, and, you know, those dreams have all changed; it's different now. I had to, so I had to let go of a lot of things I know are never going to happen for me again, you know, and it's hard.
Not being able to get up and out the door on my own and always having to rely on someone. If I could eliminate that and somehow manage that care on my own, that would be a big relief.
I get angry when I’m reminded that I have a disability—that makes me angry. The reminders are when I can’t go to just any place in the city, that there’s limits, there’s physical architectural barriers. The other barrier is when my disability kicks in, when I have accidents; we call them “accidents.” And that’s a code amongst us, “If I had an accident.” We don’t need details; go home; shower; come back; take care of your stuff; and we know what happened. I need more control; I need more control in certain things. That’s what angers me.
My day-to-day living problem is getting him to pick up after himself. Not leave 1,000 glasses behind and act as though he’s 28, and not 18 again.
Getting up the stairs. That would probably be it, that's the only thing that I can't do by myself is going up the stairs.
Bowel and bladder accidents—big time, big time concerns; they don't happen very often, but they're big concerns—and I would wager, that for most people with a spinal cord injury, not all but most, especially the higher level spinal cord injury, it's a concern. And it's a concern for two reasons: one, it's difficult to manage, and two, it's embarrassing. You know, we learn to take care of our bowel and bladder functions during infancy or as toddlers; you don't expect to have to think about that as an adult. So to always be confronted by the thought, is an annoyance. It's manageable, but it's an annoyance.
Number-one day-to-day living problem, I'm still, I get a little afraid when I do my transfers. I'm afraid, deathly afraid, of falling, and I guess that's because I live alone and I don't want to call somebody, "oh help me up." So, when I do my transfers morning and night, I'm like, okay, be extra careful. So, it's just those transfers are a little tricky.
Bowel program, without a doubt. I heard somebody, they did a study and they asked, I don’t know, a gazillion spinal cord injury people, “if you could be given the gift to be able to walk again, or to have your bowels and bladder work normally, which would you pick?” And the vast majority said bowels and bladder. So, life would be perfect if that didn’t have to happen on a regular basis.
I would say time is my biggest living problem. Specifically, it takes me a long time to do just everyday tasks. It takes me a while to get out of bed and get ready for school. It takes me a while to use the bathroom, it takes me a long time to shower. Everything takes a little bit longer. And I feel like over the course of the day, that adds up and I end up losing kind of a lot of time. So I think time management is my biggest issue. And then knowing at what points do I need to take out to just cut some of that time loss off and at what points is it worth it.
Going to the bathroom is the biggest pain in the butt. So, one, just, like, for lack of better labels, just peeing is a pain in the butt. It’s like a schedule, you got to deal with it every six hours, right, so I don’t care if you go out, and have a great night, and you’re up late, got to wake up and go to the bathroom in the morning. Then it’s like when you’re out and about, “Where do we go to the bathroom?”—“Do we take care of business in the van, or do we go out?”— You know, “Is there a restroom we can use if we’re out?” If I’m at work it’s, “Do they have a bathroom we can use?” Number one, for sure. And, I don’t care how many years you’ve been in a chair, like, bowel program is disgusting, it’s demeaning, and it’s horrible. And, it’s awful. Period.
Honestly, the number-one day-to-day problem is making myself sit up, and put my legs over the bed and get in my wheelchair. Like not because I’m scared of it or I know it’s going to be difficult, it’s just that the bed feels better. Because once I’m up in my wheelchair, I don’t stop until 11:00, 11:30 at night. And I go, go, go, and I take care, and I do this, and I do that but it’s like, “I want to just stay right here.” But I make myself do it, and it’s fine once I’m doing it. But that’s the number-one day-to-day, I just don’t want to get in my wheelchair.
You know, clearly it's, it's, you know, being in an environment that isn't necessarily hospitable to people who use wheelchairs. As a parent, you know, being able to do the things with my child that every parent should be able to do with their child, and having that sort of challenged on a regular basis. I mean you have, you know, things like curb cuts seem so, logical, you know, but they're not always there. Stairs, attitudes of people who just say well, you know, it's not worth it, you know, there're not enough people like you to make these changes.
One of the things that I hate, if I can use the word 'hate', in all sense of the word, is having to go to the bathroom in the middle of the night and cath because I can't half-ass it. I have to be alert to be able to transfer and that means I have to be awake. And then, you know, I don't turn the lights on because I am so good at it now because I know where stuff is, but I hate that. That's one thing that I will always hate, I think. And spontaneity is sometimes is out of the picture for me, you know, I have to over-process things. Like, when I travel, you know, I have to say, "Okay, if this happens to me, you know, I have to pre-plan things.” So, I don't like that as much. You know, I am not as spontaneous as I would like to be.
Living in Chicago, the weather; if it's not too cold, it's too hot. You know, for me I can be neither, either I'm dehydrated or I get sick right away, so that very inconvenient. I love the city, but the weather's not the best. From there, I would say my transportation service. I mean, I wish I could just get up, get in the car, and go to where I need to go, but I'm working on it, but it's still not there, so that's a pain in the butt. Other than that, I mean, I pretty much make the best of it, so you know, weather we cannot control, and driving, hopefully I'm working towards that, so you know.
Probably cleaning up probably, because I hate cleaning up. I do it, but it’s like—the two parts that I hate the most are cleaning the bathroom and washing dishes. Everything else I’m okay with, it’s just those two things. I even vacuum the floor, but just washing dishes and cleaning the bathroom is like all-time-worst for me. And so, everything else I am okay, I can manage.
I get very angry when someone doesn't want to accommodate him. This just really, this brings out the venom in me. It kills me when, like at a restaurant when they want to sit you in a bad situation, you know by the kitchen or something, because he's in the way, otherwise, it bothers me. Anyway, I've just learned you say, "No, I just won't sit there," you know, especially if the place is empty. "No not here, over there." And you just let people know, "no, this is just not the way it's going to be." And I'm old enough that I can do that now. I've learned that you don't do something you don't want to do just because somebody else says do that. No, no!
Probably programs because dealing with the UTIs and stuff I have been dealing with lately, it’s like I can’t catch one single program without peeing, or messing up the chair, my outfit. That’s probably my main concern, just trying to stay clean.
The confinement right now, and the depending on other people when I need to do something or go somewhere. It’s still like, it’s been a year-and-half now, and I want to be able to come and go as I please. And not being able to do that, sometimes really you just want to pull your hair out and just scream. It’s really difficult depending on other people when you know you can do these things. So, that’s a challenge for me still.
The wheelchair is not the problem. Being in a wheelchair and rolling around, it’s just another way of transportation. So, that’s not a problem. It’s some of the other things that you have to deal with from a wheelchair in the paralysis side of things that are, you know—if I just had a decent bowel movement once would be great, a decent you know, I just don’t want to leak and pee in my pants. That’s more important to me than—I don’t have to walk, I just don’t want to have to change clothes all the time. Being in a wheelchair is not a big deal.
I don't think I have any problems other than, you know, than any other person. You know, the economy is tough, you know, gas keeps rising, you know, the streets of Chicago suck. So, I think I, I have the same problem as somebody without a disability.
Probably nerve pain. I do have a Baclofen pump also for spasms. So, probably between those two things, spasms and nerve pain, really are the biggest issues. I’ve learned to breathe through a lot of my pain, so I take very little pain medication. I don’t like pain medication, so I take as little as possible. I really only take it at night before I go to bed and I just deal with the pain during the day. As far as spasm goes, the Baclofen pump works pretty well. When I do have a spasm I just stop, let the spasm do what it’s going to do. You can’t really control them. You just wait for it to get over and then move on.
Well unfortunately, and I think a lot people this happens with, I guess because of the type of injury I had in a car accident, and all the other type of injuries, I have a lot of pain. And, unfortunately, it kind of seems like when you’re spinal-cord-injured—and I guess this happens to people that are able-bodied as well—but when you’re in pain, the doctors don’t handle that real well. A lot of doctors just don’t know what to do with pain. Usually pain’s caused by something, they fix it, it goes away. Well I guess with this chronic pain that I’ve got, they don’t know how to make it go away. And, we’ve tried several different things. The type of pain, it’s kind of like, a band that goes around, it’s kind of this neuropathic pain, they don’t seem to have something that actually gets rid of it. And I’ve tried different things. I’ve been on everything from Hydrocodone, to OxyContin, to the Fentanyl patches. But, I was doing the patches and some Hydrocodone together, and then, of course, you’re kind of a little foggy, and so that wasn’t good either. So, I just ended up stopping the Hydrocodone, and just strictly doing the patches, and then the patches became completely, pretty much ineffective. And, we’ve tried, we’ve gone through the surgery trying to implant maybe electrodes, we’ve tried to implant like a pain pump, and because of all the scar tissue and such, that’s not worked out. And, that’s been very frustrating because, you know, there’s times I’ve said, you know, “I can deal with being in a wheelchair, but sometimes the pain is what really holds me back from doing things.”
Having good-quality reliable caregivers, so that I do not need to worry what’s going to happen tomorrow or what’s going to happen next week. If I had that reliable everyday basis that would make the rest of life easier to handle logistically.