Life on Wheels (23 page)

Users of mechanical ventilators run some risk of developing skin breakdown at the tracheal opening in the neck. The tracheal opening is already an open wound and so can attract bacteria. When using a cuffed tracheostomy tube to create a more effective vacuum for air flow, the covered area should be inspected daily. It is usually the goal to wean such a user from the cuff, since it also interferes with the ability to speak.

You’ll also want to look in those narrow places where the sun doesn’t shine, as they say. Locations such as in the groin on either side of your genitals are places that easily become moist. They don’t get much opportunity to breathe because you’re sitting down most, if not all, of the time. After bathing or showering, you want to make a special point of drying these areas well, even using a hair dryer on cool setting if needed.

The presence of moisture invites the growth of fungus and bacteria that can cause a rash. This is essentially the same as athlete’s foot, so the spaces between your toes—easily ignored because they seem so far away and may not be easy for you to reach—also need your special attention.

Use of baby powder is a good preventive strategy, helping to absorb moisture from the surface of the skin. If a rash develops, an over-the-counter treatment such as Tinactin
^®
spray can help manage it. If the condition persists, see your doctor. And be careful not to mistake the redness of a pending skin breakdown for a rash. If this occurs in an area where you have no sensation, you will not be able to judge the difference, since a rash tends to itch in a way that a pressure sore does not.

The design of wheelchair cushions to minimize sores has become very advanced. It is critical for people who sit for long periods of time or who have reduced ischial muscle mass to sit on an appropriate surface that properly spreads and reduces pressure and to practice good pressure-relief habits. The basic types of cushions are air flotation, gel, foam, urethane, and alternating pressure. Cushions are described in more detail in Chapter 4, Wheelchair Selection.

For people less mobile in their chair, cushioning is also important for wheelchair backs. Continuous contact with the back of the chair can lead to scapular sores in the shoulder area. There are wheelchair back options with scapular cutouts to prevent this from happening.

Your bed is another important place to ensure even pressure distribution as a way to prevent sores. Spending more time in bed than in your chair—for example, after surgery or during an extended illness—is a highrisk period when you need to be extra vigilant. “Eggcrate” pads for the bed are commonly used in hospitals and are moderately priced for home use; the foam surface spreads and reduces pressure by means of peaks and valleys. Some sophisticated bed-cushioning products include an air or water pump that maintains pressure throughout the pad, or alters it gradually, alternating pressure changes across the body to provide relief to one part while the other is more supported.

Sheepskins are also popular bed cushioning. The wool is trimmed and the sheepskins are laid under the bottom sheet. They are soft and comfortable and minimize pressure points, particularly on the hips, elbows, and knee joints, which tend to get the most contact while lying down. Some sheepskins cannot be laundered; the skin becomes hard and brittle.

Excessive curvature of the spine is a serious problem. The spine supports you and allows you to bend and twist. The spine is meant to work in cooperation with the muscles of your trunk, the job of which is to balance and move us and to maintain the intended, optimal functional shape of the spine.

The spine’s gently curving shape is part of its flexibility. Because the curves are gentle, the spine’s structural capacity remains strong. When the curves become severe—or when the spine curves to the side, out of its natural symmetry—the spine’s ability to do its job of structural support is compromised. Muscles must start to do more of the work of carrying us, leading to fatigue, back pain, and continuing degradation of the spine. The further curvature and degradation progresses, the faster the damage happens.

Some people with disabilities have limited use of trunk muscles, particularly with high-level quadriplegia from SCI and those with CP, progressive stages of certain muscular dystrophies, MS, and ALS. Such people are at greater risk of spinal curvature because muscles are too weak or paralyzed to help keep the spine in alignment.

The spine—and the body in general—learns from how it is used. If you spend enough time in slumped and twisted postures, your body learns this state. Muscles, ligaments, and bones will begin to adapt, changing shape and adopting the curvature as normal. Your sitting habits—in or out of the wheelchair—and sleeping positions can either support the proper shape of the spine or teach it to go out of line.

Many chair users hook an arm behind them on a push handle to support the upper body while they reach with the other hand. If you have limited upper-body balance, you are at risk of falling over unless you anchor yourself somehow. There is a tendency to reach with your dominant hand and always twist in the same direction, thus teaching the spine to adopt a curve in that direction.

For some people without sufficient upper-body strength and balance, pushing a manual wheelchair puts deforming strains on the spine. This man with spinal cord quadriplegia in his early 30s found that using a manual wheelchair was not really appropriate for him:

The proper specification of wheelchair and positioning systems— backs, cushions, stabilization accessories, and so on—along with vigilant posture management are crucial to preventing spinal curvature. Therapists often do not teach people enough about posture during the rehabilitation process. In the attempt to get comfortable, you might establish poor habits that can contribute to scoliosis. If spinal curvature has not progressed too far, it can be corrected by changing those habits. This man changed habits when he began to see a chiropractor:

Wheelchair riders need a variety of postures because the body needs movement and comfort. Good posture is a matter of being conscious of how you hold your body, spending more time comfortably supported upright, and spending brief amounts of time in nonneutral postures. When you slouch to the right, next time do it to the left.

To the degree that you still have sufficient upper-body balance and control, the risk of spinal curvature can be prevented by having the right equipment and knowing how you use your body. Being active, maintaining range of motion, having properly-specified, well-maintained equipment, and being aware of your posture are key to maintaining the health of your spine and avoiding the daunting impact of scoliosis.

A number of undesirable things happen when the spine goes out of shape. The muscles and ligaments around the spine get stretched out of shape, compromising their ability to support the spine and causing discomfort and pain. In the long term, it becomes difficult to sit for more than brief periods of time.

When the spine deforms, the rib cage also deforms; the lungs are compressed, compromising the ability to breathe fully and provide the oxygen your muscles and metabolism require.

As the spine deforms, the discs between the vertebrae get squeezed. Discs are gelatinous cushions, key to the flexibility of the spine. When the discs get compressed, they change their shape, get pushed out of position, and begin to lose some of their gelatinous fluid. It is very difficult for the discs to regain their shape, and, once fluid is lost, it cannot be replaced. Damage is permanent.

Discs also help maintain the space where nerves extend from the spinal cord to the rest of the body. When the space between vertebrae gets smaller, nerves are pressed, causing damage and pain. This compression might cost you the ability to use parts of the body previously unaffected by your disability. Ultimately, neighboring vertebrae come into contact and begin to fuse. The flexibility of that “joint” in the spine is lost. If the curvature is severe enough, the spinal cord itself can be at risk of a compression injury.

When scoliosis is allowed to progress, surgery becomes necessary. The typical approach is the installation of Harrington rods, steel bars attached to the straightened spine. Harrington rods maintain the shape of the spine without relying on muscles of the back. The surgery is very involved, and the rods limit the freedom of the spine to move, imposing a rigid upright posture on the person. In rare instances, there is a risk of injury to the spinal cord from the surgery.

When scoliosis has become progressive, the surgery can be lifesaving. Many people feel a great relief to have an upright, symmetrical posture again, despite the rigidity. For people born with CP, certain muscular dystrophies, or other childhood disabilities that affect the back, this surgery is often necessary early in life and can make a significant difference in their quality of life.

Spasticity is an issue for people with spastic CP, SCIs in the thoracic and cervical regions, MS, ALS, and other conditions involving the spinal cord and brain. Spasticity can be a daily event—painful and significant enough to interfere with daily activities. How seriously spasms affect someone’s life varies widely. They can be extremely painful and severely limit your ability to function. Or they can be an aggravating, occasional event, as this woman with an SCI reports:

Contracting a muscle is not a simple, one-way communication, where the brain sends a message and the muscle contracts. Instead, the communication between brain and muscle is two way and more complex. The brain is getting immediate feedback from the muscle, about how much it has contracted, whether it is fatigued, and if there is pain, for instance. The communication is a loop of nerve impulses going back and forth.

Not all impulses to a muscle originate in the brain. Direct stimulation of the muscle causes a reflex response. This is what happens when a doctor taps you on the elbow with that little rubber hammer. The muscle responds with a contraction. With a central nervous system disruption, this loop of communication between brain and muscle can get interrupted. Reflexes run amuck, resulting in spasms; the brain is unable to sense the muscle contracting and then send the appropriate messages to the muscle to calm the reflex. Spasms could be a brief episode in which parts of your body suddenly move, sometimes in a repetitive, vibrating manner.

Spasticity can also be chronic, pulling the body into positions, which can lead to scoliosis, digestive problems, or limited range of motion.

Spasticity is not always a bad thing. Spasms exercise your muscles, since they are contracting and maintaining some degree of muscle bulk; the only other way to exercise paralyzed muscles is with direct electrical stimulation. By maintaining muscle tone, you can be protected from pressure sores that are more likely to develop with atrophied muscles. With quadriplegia, this muscle tone can help maintain postural integrity—the increased muscle bulk provides better trunk support. Many people find they are able to wear shorts, being less self-conscious of their legs, which remain muscular. Some who are counting on the future results of spinal cord cure research feel that keeping muscle tone improves their chances of being able to benefit from possible advances.

Increases in spasticity can serve as an early warning system for other changes in health, such as infections, an over-full bladder, a pressure sore, the presence of an injury you cannot feel, or more serious conditions such as the development of a spinal cyst (known as syringomyelia), spinal tumors, transverse myelitis, or Guillain-Barré syndrome, for example. Any changes in the general pattern of your spasticity should not be ignored—it might be an important sign.