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Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons

Part Three
OVERCOMING DIFFICULTIES WITH BODY
FUNCTION THAT RESULT FROM DAMAGE
TO THE NEROUS SYSTEM

Julio Uses His Spasticity to Prevent Pressure Sores

165

CHAPTER 28

Because Julio was the person with the least power physically at PROJIMO, he was given a job that gave him more power socially: recording the hours worked and wages earned by each worker. Here, he writes with a plastic pen-holder strapped to his hand.

JULIO was 15 years old when his six-year-old sister, playing with their father's pistol, accidentally shot him in the neck. From this injury Julio became quadriplegic (paralyzed in all 4 limbs). When he was taken to PROJIMO several months later, he had a deep, infected pressure sore over his sacrum (the bottom end of his backbone). The sore had already destroyed the end of his spine. It took months of treatment with bees' honey mixed with sugar for the sore to heal. (For information on treatment of pressure sores with honey and sugar see page 156.)

Preventing More Sores. After Julio's pressure sore had healed and he could sit in a wheelchair, the PROJIMO team wanted to make sure that further sores were prevented. They provided Julio with a good cushion, and helped him explore ways to take the pressure off hfs backside at frequent intervals. For Julio, this was not easy.

Using his arms to lift his buttocks off the seat every 10 or 15 minutes.

For a person with paraplegia (paralysis of the lower part of the body), pressure relief is easy. He simply uses his arms to lift his buttocks off the seat every 10 or 15 minutes. This allows blood to circulate in the skin and flesh of the backside, thus preventing sores.

But for someone with quadriplegia, whose arms, too, are partly or completely paralyzed, lifting the body to reduce pressure is more difficult. The following positions can relieve some pressure on the backside:

When doing this (moving side by side), one buttock lifts in the air. These positions (leaning back and forth) reduce pressure on both buttocks.

However, for a quadriplegic person, none of the above positions is simple or comfortable. Without great care and self-discipline, such persons often develop new pressure sores.

Spasticity: Hindrance or Help. Many spinal-cord injured persons have a lot of spasticity (involuntary tightening of muscles), especially in their lower body and legs. Spasticity can be very bothersome and make some actions more difficult, such as bending forward to tie shoes, or to relieve pressure on the backside while seated.

However, many spinal cord injured persons learn to use their spasticity to good advantage. For example, some persons use the spastic straightening of their legs to transfer from their wheelchair to a bed, a car, or a toilet. Others use it to stand or walk with crutches but without leg braces. Each spinal-cord injured person should be encouraged to experiment with new ways to move, position, and control their bodies, and to see if they can find ways to put their spasticity to good use.

166

USING SPASTICITY FOR LIVING INDEPENDENTLY.

Julio uses his spasticity to transfer to his bed. He shakes his thigh, which causes his knee to straighten stiffly so he can lift it onto the bed.

Through experimenting, Julio has learned to use his spasticity to be more self-reliant, despite his paralyzed hands and weak arms. (He has developed strong shoulder muscles, which help compensate for his weak arms.)

Julio shows how to use his spasticity to straighten his knee. And now he manages to "break the spasticity" and bend the knee.

Using spasticity for dressing. Lying on his back, Julio first bends one knee to his chest, and puts his pants over the foot. Then, he triggers spasticity by tensing his head and shoulder muscles and pushing the leg. His leg straightens stiffly, pushing it into the pants.

1. Julio bends his knee and positions his open pants in front of his foot. 2. On releasing his leg, his spasticity begins to push the leg into his pants.

3. As the leg stiffens, Julio does his best to pull up the top of the pants. 4. Sometimes he uses his mouth to pull up his pants.

167

USING SPASTICITY TO PREVENT SORES.

Julio discovered that he can use his spasticity to help prevent pressure sores. He does this by triggering the spastic straightening of his hips and knees. To do so, he leans backward and pushes with his hands against the hand-rims of the wheel (with the brakes on). As his body stiffens, his backside lifts up off the seat of the chair, relieving the pressure. Julio has found that for him this is the simplest and most effective way of weight-shifting to relieve pressure and prevent sores.

Julio sits normally in his wheelchair. On triggering his spasticity, his buttocks lift off the seat. To lift up higher, he uses his shoulders to push himself up.

USING FINGER CONTRACTURES FOR GRIPPING WITH PARALYZED HANDS

His four fingers cannot reach his thumb.

As with spasticity, some contractures can occasionally be put to good use. Like many persons with quadriplegia, Julio has learned to use the contractures in his paralyzed fingers to grip things. Persons with a lower neck injury (C-6 or lower) tend to have strong shoulders and some strength in arms and wrists, but complete paralysis of their hands. The fingers tend to develop contractures like this.

Normally, contractures should be prevented or corrected by range-of-motion exercises. But with quadriplegia, finger contractures should be allowed to develop to some extent, since the bent-fingered stiffness can be useful for picking things up.

To open his hand more, Julio bends his wrist forward. To close his hand around an object, Julio bends his wrist back. CAUTION: Do not let the fingers contract too much!

In this way, Julio can use his paralyzed hands to feed and dress himself independently, and even to propel his wheelchair.

Julio

Julio has learned how to make the best use of both his spasticity and his contractures. More important, he has become an excellent teacher and peer counselor, helping other spinal-cord injured persons experiment with new ways of listening to and learning from their bodies. He is especially caring with children who feel lonely and lost.

168

Julio teaches daily living skills to another quadriplegic youth:

ROMEO was working as an "illegal alien" in the United States to send money to his sick mother back home. Then he became quadriplegic in a car accident. After 3 months in a hospital, he was sent back to Mexico. When he arrived at PROJIMO, Julio soon became his friend, tutor, and role model.

In California, a nurse had given Romeo a "transfer board" for moving from wheelchair to bed. But within 2 days at PROJIMO, Julio showed Romeo to move to and from his wheelchair with no help and without a transfer board. Then Romeo followed Julio's example.

Julio (on right) also taught Romeo to dress himself. First came exercises for bending forward. Next, Julio demonstrated different dressing techniques, while Romeo watched.

Having a capable person with the same disability as a teacher made learning easier. Both Julio and Romeo benefited greatly.

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Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons
by David Werner

Published by
HealthWrights
Workgroup for People's Health and Rights
Post Office Box 1344
Palo Alto, CA 94302, USA