On Pressure Sores And Positioning

Success post-injury is about a cripple's ability to manage all of their newfound challenges. While there will always be challenges that are unique to every cripple's injury and circumstances, there are three common areas of concern that most of us, if not all, will have to deal with at some point as we age with paralysis: 1) lungs; 2) kidneys; and 3) skin. Infection represents the biggest threat to any cripple's pulmonary and renal health, but both of those issues can usually be managed through certain treatments and with proper suctioning and cathing techniques. But the care plan for those issues can be fairly nebulous and often have aspects that are specific to each injury. So while I plan to write about my experiences managing those issues at some point, I thought the issue of skin integrity would be the best place to start since it allows for a discussion on more concrete concepts that apply to the majority of cripples.

The primary threat to the integrity of my skin is pressure sores. These are wounds that are created whenever enough pressure is applied to an area of soft tissue that it either obstructs or partially obstructs the flow of blood to the area. They typically occur on or around bony prominences where the skin is the thinnest, like on the sacrum, coccyx and heels. Pressure sores are particularly troublesome for cripples with a high level of paralysis, because we can neither feel pressure nor physically shift our weight to relieve that pressure. And when it comes to managing the onset of pressure sores, there are only two real methods of prevention: 1) utilizing materials that can offload pressure; and 2) consistently changing a cripple's positioning.

Air is the most effective material for offloading pressure followed by materials like foam and gel. Every surface that my body contacts on both my mattress and my wheelchair, with the exception of my leg rests, utilize either air or foam or both. I use a Roho cushion on my wheelchair, which is pretty much the standard for anyone with a spinal cord injury, and it offloads a lot of the pressure on to a dozen or so individual air-filled cells. The back of my wheelchair has also been pressure mapped – a process that's used to identify any areas of excessive pressure – and sculpted out of foam to specifically relieve pressure on my shoulder blades. Then there are the custom pads that keep my legs in proper alignment and ensure that they do not roll out and place undue pressure on the outer prominences of my feet. While all of these modifications to my wheelchair provide a lot of pressure relief to my backside, I still have to make sure that I'm not sitting on any wrinkles created by my clothing. And even with all of these things working in concert with each other, I still occasionally run into issues with pressure.

Another reason why pressure sores are particularly troublesome for cripples like myself – and this one really scares the shit out of me – is because I can never tell if I'm putting too much pressure on a particular prominence until a warning sign appears. And those warning signs will always force me to alter my lifestyle until they've been resolved. The earliest and most common sign that too much pressure has been placed on a specific area is red marks on my skin that persist long after pressure on the area has been removed. Anytime a red mark shows up, I will try to offload as much pressure on that area as possible and may even stay off the area altogether by staying in bed for a few days and rolling up on my side. But staying in bed for any prolonged period of time can also lead to secondary complications like pneumonia. So every skin issue requires me to navigate a delicate balancing act where I will stay in bed to take pressure off the area but still get up frequently enough to avoid pneumonia. Or at least that's the hope anyways.

The mattress that I have also utilizes both air and foam to offload pressure. It houses several air-filled cells, much like my wheelchair cushion, inside a foam structure, and then circulates the air throughout those cells to provide further pressure relief. In fact, my mattress and its air exchange offload enough pressure that I can sleep in a single position all night long. I make sure to strategically place pillows and foam blocks under most of my bony prominences, like my knees and elbows, and I always alternate sides from night to night. While this approach admittedly flies in the face of the second method of pressure relief – consistently changing a cripple's positioning – a large part of life post-injury is knowing what you need to do and understanding what you can get away with. So even though the protocol in almost every facility is to change a cripple's positioning every two hours, the equipment I have in my home allows me to get away with a more accommodating lifestyle. There may come a time when I can no longer get away with certain things like I used to, but those adjustments are necessary for all of us as we age.

None of this, however, changes the fact that it is still absolutely imperative for a cripple to change their positioning. The only caveat is that when it's necessary to change positioning can often depend on the surface a cripple is resting on and their history with pressure sores. Unfortunately, when a pressure sore eventually heals, the integrity of the skin will never be as strong as it was originally. So any area that develops a pressure sore will automatically become more prone to developing a future pressure sore. While it isn't necessary for me to change my positioning in bed all that frequently, I do make sure to change my positioning often throughout the day while I'm in my wheelchair. I do this by tilting the entire seating of my wheelchair – this includes the seat, backrest, armrests and headrest – to such a degree that it causes my weight to shift slightly, and therefore changes my positioning in my chair.

I'm not the only one that needs to be cognizant of my positioning, though. All of my caregivers have to realize the danger that pressure sores represent and how quickly they can occur. They must be competent enough to know how to work safely with my body and how to position it appropriately. While proper training can teach the right person how to do those things, one of the things that all my caregivers must inherently possess is an attention to detail. I can't always see my positioning, and I need my caregivers to notice whenever my hands might be curled or my feet are not entirely in my foam boots that I wear in bed. I can keep track of when my positioning changes due to a spasm since my spasms are never confined to a single extremity – they're always full body expressions. But failing to position me correctly can lead to the start of a pressure sore in only a few hours. And what forms in just a few hours can sometimes take days to resolve.

I talk a lot about managing the issues that are under my control, and pressure sores, by and large, are an issue that is under my control. Managing the integrity of my skin often comes down to the decision that I make. I can choose to avoid sitting on wrinkles and to change my positioning when necessary. I can choose to let my caregivers know when I spasm and need to be repositioned. And I can choose to sacrifice my short-term plans for my long-term health when a red mark appears. But I haven't been completely successful at avoiding pressure sores. While I've been lucky enough to avoid developing any large and nagging sores, I've still done battle with their insidious brand of evil twice before – once on my right shoulder and the other on the outer pad of my right foot. Even though the latter was no larger than a pencil's eraser head when I caught it, it still ultimately led to a bone infection, surgical intervention, IV antibiotics, two separate five-day stints in the hospital and a six-week recovery where I kept my foot elevated above my heart the whole time. It also cost me a chunk of my fucking foot. So yeah, pressure sores are no joke.

– King Cripple