Life on Wheels (20 page)

Design exercises that do not stress tissues.

Reduce stress in your environment—the spring tension in doors, the weight of objects, an incorrect or poorly maintained wheelchair,

Adjust the wheelchair for optimal propulsion, keep tires inflated,

Visceral (deep) pain is equated with abdominal pain. It can be caused by bladder and kidney infections, bowel constipation and impaction, peptic ulcers, or gall bladder or kidney stones. Sweating, changes in blood pressure, or increased spasticity are often associated with visceral pain and pressure sores.

When control of the abdominal muscles is lost, internal organs have a weakened support structure. The lack of support can stress kidneys, bladder, stomach,
etc.
Initial sensations, such as spasticity, nausea, or fever, might not be perceived or could be mistaken for something else, such as a UTI. Dr. Roth writes that, “Acute abdominal catastrophes were responsible for up to 10% of deaths in patients with SCI” (in two reviewed studies).
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Spasticity in abdominal wall muscles can be very painful and possibly mistaken for problems in internal organs. As with spasticity in general, movement or sensory stimulation might evoke the spasm. Spasms localized to the abdomen could indicate a deeper, systemic problem. Your physician should first attempt to rule out spasticity as the cause of pain before settling on a diagnosis of a deeper organ disorder.

Most visceral pain involves constipation and impaction, which can be experienced as a feeling of fullness or bloatedness. Keeping a regular bowel program helps your doctor diagnose pain. Your doctor can more easily rule out the bowels and determine the source of your pain sooner, avoiding the chance of a problem escalating into a life-threatening emergency.

Many disabilities affect the nervous system. Pathways that generate and carry messages of pain are functionally impaired; pain signals can result from sensory confusion in the body. Spasticity is an example of how the nervous system gets caught in a loop, with muscle impulses bouncing around in muscles because the brain can’t turn them off. Sensory signals are thought to be capable of behaving in a similar way. “Phantom” pain, experienced by people with amputation, is a case in point. The limb is no longer there, but the sensory system still thinks it is and continues to generate sensations, which seem to come from the missing limb. Pain from brain and spinal cord conditions seem to share some of the mechanisms related to phantom pain.

Pain can signal that something is going on in the body that merits attention, just as muscle spasms can signal infection, a full bladder, or other conditions. Pain is your early warning system, and if you ignore the first alarms, they’ll get louder.

The same therapies used to manage muscle spasticity often help with pain, although doctors can’t always explain why. The drug 4-aminopyridine is presently in tests as a method of increasing function for people with SCI and MS. It helps amplifying nerve impulses past areas where myelin, the material that insulates nerves, is damaged. Researchers were surprised to find that a drug that increases nerve impulses also helped to temper muscle and sensory spasticity in some people.

Pain management demands a good working relationship with your physician to develop the best strategy. Physicians can’t magically identify the exact cause and make it go away. Dr. Roth, writing for other physicians who specialize in the treatment of SCIs, states:

The least invasive approach to manage pain is always preferred. Start with an active lifestyle—even if it is only performing regular range-ofmotion exercises with an assistant or alternating time in and out of your wheels as you’re able—and maintain a healthy diet. Avoid factors that cause pain, such as infections, sores, or bladder and bowel disorders. Don’t abuse alcohol, drugs, or tobacco. These things might seem like a source of relief from your pain, but, in the longterm, they only exacerbate it.

People are increasingly exploring what are called alternative (or complementary or holistic) measures to manage pain.

Emotions have a great impact on pain and don’t have to be treated with drugs. Dr. Roth writes:

Fostering friendships, having satisfying activities, getting out into the world, or watching a funny movie can play important roles in your health. They help keep you out of pain. They help you remain focused on the external rather than dwelling on the internal.

Biofeedback is a method in which electrodes are placed on your head to read brain waves. A readout of brain activity appears on a meter or a computer screen. By relaxing and noticing the effects of your thoughts and breathing on brain-wave activity, you can learn to control stress and muscle tension. Biofeedback training allows you to take these skills into your daily life, using what you learned while using the machine.

In the film
Mask
, a young man has a disfiguring disease that sometimes puts great pressure on his brain and spine, causing great pain. His solution is to visualize a beautiful place and describe it in detail, closing his eyes and breathing deeply. Although this example is fictional, visualization is a valid pain-management technique.

This woman found benefits in acupressure, a form of massage therapy that uses some of the same theories as Chinese acupuncture:

There has been much interest in electrical stimulation as a means of pain management. TENS—transcutaneous electrical nerve stimulation— stimulates peripheral nerves and has the effect of diminishing pain. A TENS unit can be used at home without skilled assistance, after it has been set up by a therapist or trained professional and explained to you. It is a small unit—the size of a transistor radio—with electrodes that are applied to the surface of the skin. Its effect is temporary, but a 1977 study of seven quadriplegic and 32 paraplegic subjects showed that half of them found complete or nearly complete relief with TENS. Another 41% had moderate relief. TENS was more effective with musculoskeletal pain. Pain rooted closer to the spinal cord or brain did not respond as well.
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Strong pain elicits strong emotions, and, at some point, you need a break. If you are disabled by pain, if it interrupts your sleep cycle, if it prevents you from being able to maintain your health with exercise and activity, then it might make sense to cautiously and carefully employ drugs to manage your pain.

Many drugs are used to manage pain. Some of them have significant side effects, such as reducing your sexual impulses. Many pain drugs are also sedatives, which will affect your clarity, cause constipation, or affect your appetite. A pain medication could interact badly with a drug you are taking for another reason. Drugs should be used only when their value outweighs the side effects. Any prescribing physician should know all of the drugs you take.

The body has a way of adapting to drugs. After a while, you might need a larger dose or the drug might not work at all. Some drugs entail a risk of physical or psychological addiction.

The last resort to treating pain is surgery. Dorsal rhizotomy is a procedure to cut nerves to simply turn off the pain impulse. More extreme is surgery to cut the spinal cord below the level of injury. This procedure is known as a cordotomy. Since it obviously can’t be reversed, it is performed in only the most severe cases. If injury to the spinal cord was not complete before the surgery, some function or useful sensation could be lost after the surgery.

Success rates are not high with these surgical procedures. Studies have found only half of people who underwent cordotomy experienced permanent relief. The percentage was 65% for people who had dorsal rhizotomy.
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For manual chair wheelers, the shoulders are especially prone to overstrain, as they bear the greatest burden of making up for what your legs used to do to carry you through space. Doing your own transfers gives your shoulders extra duty. You can protect your shoulders from chronic pain and eventual shutdown through a combination of being in shape, maintaining your chair, and refining your wheeling style.

The more strength your shoulders have, the more they can weather the demands placed on them by full-time wheeling. Gentle but regular exercise will help maintain optimal strength. You don’t need to be “bulked up” in order for your shoulders to be up to the task at hand. In fact, too much bulk can begin to limit the range of motion of your arms at the shoulders, ironically making muscles work even harder. An exercise approach based on bulking up also means working with heavier free weights or higher settings on machines, which forces you to exert greater force with your hands and wrists, putting them at risk as well. Go easy on the weight, and you’ll still get and stay strong with a regular exercise routine and active lifestyle.

Muscle strength is directly related to how far your muscles can shorten during a contraction. Our muscles tighten with overuse, so stretching to help them maintain this elasticity is another important component of proactive safety for your shoulders. See the section below on yoga and stretching.

Having your chair in good shape helps keep you in good shape. As the tires go soft, if the frame gets loose, if your joystick is in a poor location, or if your wheel rims are in the wrong relationship to your hands and arms, then you will be unnecessarily straining your shoulders. The right chair properly maintained and adjusted (see Chapter 4, Wheelchair Selection) will put the least demand on your shoulders.

Even the perfect chair doesn’t get you all the way to shoulder safety if you don’t learn how to use it well. Coast whenever you get the chance, go easy on the speed, and let somebody who knows what they’re doing give you a push on the major slopes rather than push yourself to your limits.

Perhaps the greatest scourge of full-time wheelchair users is developing pressure sores from sitting for long periods of time or from being in bed. Sores— or decubitus ulcers—can take months to heal or may require surgery or hospitalization, though typically only if they are not treated early. If the sores are allowed to advance far enough, you are likely to find yourself spending a lot of time in bed—or worse, in a nursing facility.

Pressure sores form when oxygen and blood are restricted in skin tissue by the weight of the body pressed continuously on a small area of skin. For people unable to use the gluteus maximus muscles of the buttocks, pressure is increased as those muscles atrophy (thin from disuse). The skin comes in closer contact with the bone, limiting circulation further. Two bony areas are of particular concern: the ischial bones of the pelvis upon which we directly sit, which are somewhat pointed and apply direct pressure to a small area, and the sacrum at the base of the spine.