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In many ways, the person most responsible for keeping you healthy is you. It's up to you to make good decisions about how long to stay up in your chair, what to eat, what level of exercise or activity you can handle, how much to sleep, whether to use alcohol or drugs, whether to stop smoking, and if and when you need help with your daily activities or your health care. In fact, medical research proves that people with spinal cord injury who follow a healthy lifestyle are much less likely to develop a pressure ulcer (which means the same thing as "pressure sore" or "bedsore") 5 or more years after their injury than people whose lifestyle habits are not as healthy 1. Studies even show that when you are active in helping to plan your own care, you can gain a sense of empowerment and self-reliance 2, and that kind of positive attitude and belief in your own abilities helps give you the confidence to form the habits you need to avoid pressure ulcers 3 4. Unfortunately, sometimes people are limited in the amount of freedom they have due to being hospitalized or living in a health care facility that has rules for patients to follow, or due to experiencing a health problem that takes priority over other considerations, such as when a person has pneumonia or cellulitis, or when someone is recovering from surgery. In most cases, however, you do have some control over deciding how you will take care of your health. That means that it is up to you to make pressure ulcer prevention practices a part of your daily or weekly schedule, whether you live on your own or with assistance. Which prevention practices you want to do, and how you choose to do them, is for you to decide.
One reason it is so important to put thought into pressure ulcer prevention practices is that relieving pressure is not an "automatic" action for most people with spinal cord injuries. When a person's sense of feeling, or sensation, is working well, they quickly become aware when there is too much pressure on a part of their body, because there is a feeling of discomfort or feelings people sometimes describe as "pins and needles," or "my arm (or hand or leg or foot) fell asleep." Other examples are when sunglasses start to press too hard on the nose or ears and a person needs to move them, or when jewelry that fits tightly, such as clip earrings, a ring or an arm cuff, starts to pinch or "dig in" to the skin and a person needs to adjust the jewelry or take it off. That uncomfortable or tingling feeling causes a person to move around into another position, which releases the pressure and restores a good flow of blood. Unfortunately, after a spinal cord injury, sensation is limited or even missing from the parts of a person's body below the location of their injury. The result is that there is no feeling of discomfort, and so people do not know when there is too much pressure on an area of skin or a bony prominence. Without sensation, a person might not move their body, and the pressure will continue; this creates pressure ulcers. To make up for not feeling the sensation that is a warning sign of too much pressure, people with spinal cord injuries need to come up with a list of pressure ulcer prevention methods that they will be sure to do, no matter what.
Some of the most important, and most commonly used, pressure ulcer prevention techniques include:
Bladder/bowel management. Keeping skin all over your body clean and dry is important 5, because bacteria or moisture can cause an infection that will start a pressure ulcer or make one you already have get worse. Urine or feces are especially dangerous to leave on your skin, not only because they have bacteria but also because they are acidic. In fact, studies show that bladder and bowel incontinence, or leakage, increases the risk of developing a pressure ulcer 5. Making sure you have a system to stay clean and dry, whether by yourself or with a reliable caregiver, is very important; Dave and Robert both had problems because they had to remain in their own urine at night, Chris had frequent breakdowns due to slipping of his condom catheter, and Rachel developed a Stage 4 ulcer because her care attendant did not clean her when she was soiled.
Clothing. Looking good is great, but make sure your clothes are not going to cause a pressure ulcer accidentally through friction, or rubbing 5. Odel, for example, had a favorite pair of dress shoes that didn't fit well and rubbed a pressure ulcer on his toe. The seams on the back pockets of Billy's jeans were so thick that sitting on them caused a pressure ulcer. Judy likes to wear loose-fitting dresses, but when a new care attendant didn't carefully smooth out the wrinkles under Judy's bottom, two pressure ulcers were the result. Also choose fabrics that "breathe," such as lightweight cotton and other natural fibers, so that your skin won't become overheated 5.
Moisturizer. Skin that is too dry is as likely to break down into a pressure ulcer as skin that is too moist 5. Dry or chapped skin often "cracks," which allows bacteria in. For example, Helen puts on lotion every day before she gets dressed.
Pressure reliefs. It's so important to change positions frequently, so that no one part of the body gets pressed on for too long, that it could be thought of as the Number One pressure ulcer prevention technique. (There is a separate page titled "Pressure reliefs" that describes the importance of pressure reliefs in more detail.) Although it is recommended to do a pressure relief every 15 to 30 minutes, realistically speaking most people don't do them that often; you will have to find the right timing for yourself. Many people with spinal cord injuries, including Helen and Ken, say they "listen to their bodies", getting a sense of when they've been sitting in one position for too long that reminds them it's time to move. Others, like Alley and Chris, move frequently as a natural part of being busy with their favorite activities, so their pressure reliefs come automatically. Special equipment can often help you with pressure reliefs, such as a reclining wheelchair, customized cushion or air mattress.
Resting in bed. If you notice redness on your skin, it is probably a very good idea to skip the activities you do in your chair for a day or two and simply rest in bed in a position that relieves pressure in the problem area. Keeping pressure off your bottom, which is a very common place for ulcers to start, can be enough to stop a pressure ulcer before it grows. Some people, like Helen, take a day or two to rest in bed even when they don't see a red spot, just to give their body a chance to regain strength.
Skin checks. Remember that when a person has limits in their sense of feeling, they may not be aware that there is a problem with pressure on their body. For that reason, people with spinal cord injuries must look for other clues that a pressure ulcer might be forming; checking your skin by touching it or, probably better still, looking at your skin is a good way to make up for not feeling discomfort or pain. Whether you do it yourself (maybe with help from a hand mirror) or whether you do it with a care attendant or a partner, or a friend or family member, checking your skin every day is probably the Number Two most important key to preventing pressure ulcers; our study participant Odel checks his skin twice a day, morning and evening. Unless you look carefully at your skin, you won't know you're developing a pressure ulcer until it's too late. Seeing a red spot gives you a chance to rest in bed or take pressure off that area, which can stop it from turning into an open ulcer. You can also check your skin by touching it; signs of danger include skin that feels unusually warm, wet, hard or soft 5. When you find a spot that is extremely red, feels strange to the touch or is already starting to open, it is the signal to go to a doctor immediately, because the longer you wait to do something about an ulcer, the worse it gets, and the harder it is to heal 6. As one of the participants in our study, Brenda, talked about the importance of skin checks:
People really have to watch it. Your skin can change in a minute. As soon as you see redness or skin discoloration, you have to really watch it. It's important to watch it and jump right on it. Go to the doctor right away so you can have it assessed. I would tell anybody, as soon as you see redness or change of color, make an appointment with the doctor if it doesn't go away. Do as he advises; it's the way to go. You can't just lay around and hope it's going to go away. Don't just try to use lotion or repellent and think that it's gonna [work]... You really have to see the doctor and do what he says. It's important. I've learned my lesson in that.
You may find some particular or different way of doing some of these techniques above that fits your lifestyle best. You may come up with other ways to prevent pressure ulcers altogether. The most important thing is that you do something, and do it often.
For more information about pressure ulcer prevention practices you can do yourself or with your care attendants at home, along with illustrations of pressure ulcers and links to more Internet sites that may help you, we refer you to an excellent ad-free website maintained by the University Health Care System, in Augusta, Georgia. The information on that website is provided by Healthwise, which also supplies information to WebMD, a website run by the publicly-traded company WebMD Corporation, which displays ads along with health information. Another page with pictures and suggestions for pressure reliefs while sitting or lying in bed is Skin Care: Relieving Pressure on the Skin, on the website of the LIFE Center of the Rehabilitation Institute of Chicago; the same website also has Skin Care: Preventing Pressure Sores, a simple list of things to do, and not to do, to prevent pressure ulcers.
Other valuable suggestions of pressure ulcer prevention techniques can be found on Prevention of Pressure Sores through Skin Care, on the Spinal Cord Injury Model System, maintained by the University of Alabama at Birmingham, or at Maintaining Healthy Skin: What is healthy skin?, on the Northwest Regional Spinal Cord Injury System (NWRSCIS), maintained by the University of Washington. The NWRSCIS has a second page, Maintaining Healthy Skin: Skin inspection, which has other pressure ulcer prevention advice and illustrations useful for doing skin checks.
If you are interested in information that is in the same style you might see in a hospital or rehabilitation facility, an excellent resource is Pressure Ulcers: What You Should Know, created by the Consortium for Spinal Cord Medicine, which is supported financially by the Paralyzed Veterans of America (PVA). This 45-page guide is easy to read and to use. You can also download a free copy in PDF format. Úlceras por Decúbito: Lo Que Usted Debe Saber Una Guía para Personas con Lesiones Medulares ha sido producida en Español de parte del PVA por el Consorcio de Medicina de la Médula Espinal. Usted puede llamar a 1-888-860-7244.
You can also try a Spinal Cord Injury Manual. The manual was prepared for consumers by the Regional Spinal Cord Injury Center of the Delaware Valley, which is part of Thomas Jefferson University Hospital in Philadelphia, PA.
1 (2004). Patterns of recurrent pressure ulcers after spinal cord injury: Identification of risk and protective factors 5 or more years after onset. Archives of Physical Medicine and Rehabilitation, 85, 1257-1264.