CHAPTER 43

Disabled Gangsters Help a Child
with Muscular Dystrophy

Creating an Environment That Brings Unexpected Improvement in Children with Muscular Dystrophy

Muscular dystrophy is a condition in which muscles gradually become weaker and weaker. Most specialists agree that nothing can be done to help the child regain lost strength. This may be true in the long run. But we have seen some children seem to get stronger, at least for a limited time.

ABEL, for example, is a boy with Duchenne's muscular dystrophy. His arms had grown so weak that he could not push his wheelchair more than a few inches on a flat surface. His parents wheeled him everywhere. While at PROJIMO, Abel gradually regained enough strength to wheel himself around the whole yard. In doing so, he gained a new sense of self-determination.

Over a period of 3 years, as his dystrophy slowly progressed, Abel again lost his capacity to propel his wheelchair. But for years he had achieved greater independence of movement - an ability which he, his parents, and his doctors had assumed was permanently lost.

Although a child with muscular dystrophy has slowly diminishing muscular potential, it appears that, at any stage of his condition, his strength and physical ability can be increased to more closely approach his potential at that stage.

Abel's increase in strength and ability at PROJIMO was probably the result of several factors: increased activity, increased motivation, and increased expectation by others. At home, his parents had done everything for him. They had kept him away from activities and adventures they feared might tire him. But at PROJIMO, Abel was encouraged to do as much as he could for himself. Also, he had excellent role models, including persons who were quadriplegic (paralyzed from the shoulders down), yet who were largely independent in self-care.

Creating an environment that brings unexpected improvement - in gangsters.

There is an old saying: "Poor Mexico, so far from God and so close to the United States!" Mexico's huge foreign debt, falling wages, growing unemployment, and pressure from the US to weaken Mexican laws protecting small farmers have all increased the hardships for most Mexicans.

Since the start of the North American Free Trade Agreement (NAFTA) in 1994, over 2 million peasants have been forced off their land to join the jobless multitudes in Mexico's swelling city slums. As the gap widens between rich and poor, millions of street children and youth struggle to survive through odd jobs, stealing, prostitution, and drug trafficking. Crime rates, violence, and police brutality have drastically increased. This growing "sub-culture of violence" has brought new difficulties and challenges to PROJIMO. The small village program has had to attend to over 400 spinal-cord injured youths, mostly disabled by bullet wounds, from all over Mexico.

It has not been easy. PROJIMO has set rules of behavior prohibiting alcohol, drugs, and violence within its grounds. Those who break the rules are threatened with expulsion. But it is not easy to throw out someone who has dangerous pressure sores or other life-threatening problems. Many have no home to return to. To send them back to the city streets can be a death sentence. One young quadriplegic man who was expelled from PROJIMO died from pressure sores 3 months later.

One of the worst acts of violence at PROJIMO was when two young men, who had been shot through the spine in gang fights, got high on drugs and booze. They attacked a retired, diabetic school teacher who was being fitted for an artificial leg. They tried to stab him as he lay on his bed. The terrified teacher shielded himself with an electric fan until help arrived.

To cope with this problem, PROJIMO sought help from an Alcoholics-and-Drugs-Anonymous program run by recovering addicts in the city of Guadalajara. On his return to PROJIMO, one of these two young offenders became a peer counselor for other young people hooked on drugs. He helped a lot of youths get control of their lives before he himself had a relapse, again became violent, and voluntarily left PROJIMO.

What has been wonderful, however, has been the apparent transformation within several of these young gangsters and drug-dealers during their stay at PROJIMO. Some of the young men, who seemed the most mean-spirited and aggressive when they came, have become among the most helpful and caring members of the PROJIMO team. In this book's Introduction (on page 3) we mentioned Quique, who was so supportive with José, a mentally handicapped little boy whom no one else was able to reach. Another example is Martín Pérez, who became one of PROJIMO's most gifted wheelchair and gurney designers (see Chapters 37 and 39). Martín showed heart-felt concern for those difficult children whose behavior sometimes led attendants to dislike or neglect them. When Martín, like Quique, was finally thrown out of PROJIMO for repeated drug use; one young girl, Tere, wept. "Martín was always the first to help me if my wheelchair broke, or when I needed somebody to talk to who really listened and cared," she said.

Seeing this kind of change from angry hoodlum to tender care-provider or creative craftsperson has given many of us more insight into human nature. It seems true that inside every person, however brutish their exterior, there is a hidden seed of goodness, a seed of compassion waiting for a chance to grow and flower. The longer that core remains dormant and unrealized, the more urgent is its need for fulfillment. Sometimes all it takes to start that seed sprouting is a friendly word, an expectation of good will, a recognition that the person has worth ... or a request for help when it is sorely needed. With the right word or touch, the toughest thug may suddenly shed his hard shell and offer heart-warming assistance and concern. And in the process, he discovers joy in doing something loving and lovable.

Angel - a Six-Year-Old Boy with Muscular Dystrophy

ANGEL was brought to PROJIMO by his mother from the village of San Augustine, 40 kilometers away. Mari and Conchita did their best to get the boy to relax and to win his trust. They talked to him in a friendly way and offered him toys to play with. But Angel clung fearfully to his mother and would burst into tears when asked a question or when gently touched.

Angel's mother said the boy had difficulty walking and that his condition was getting worse. She said she had taken him to doctors in the city, who had prescribed everything from painkillers (although he had no pain) to vitamins, calcium, hormones, and injectable antibiotics. But his walking kept getting worse.

Mari and Conchita asked Angel's mother to walk across the room. She did so, and Angel followed her. He had a waddling gait, throwing his weight from side to side, a sign of weakness at the sides of the hips. His calf muscles were unusually large for his thin body, and he walked slightly on tip-toe. He had trouble lifting his arms over his head. In order to stand up from the floor, he climbed up his body using his arms. Although there was apparently no famify history (no relatives with a similar condition), Mari recognized Angel's gradually increasing muscle weakness as typical of Duchenne's muscular dystrophy.

Conchita was also concerned about Angel's emotional and social development. He was very insecure and fearful of strangers. His mother explained that he was not used to strangers. He did not go to school, she said, because other children teased him and said he "walked like a goose." (This made me recall how I was teased as a child, see page 83.)

Possible Actions: The PROJIMO team gently explained to Angel's mother that muscular dystrophy is a condition in which the boy's muscles gradually get weaker. To date, no medical cure has been found. But they helped her to realize that certain things could be done to help her son live a fuller, happier life.

They also discussed with her different forms of "therapy." They stressed that therapy - if used at all - should be approached in ways that help, rather than block, the child's social, emotional, and mental development. They told her about the exciting and rewarding life of the Peraza family, in which 4 children with muscular dystrophy became leaders and teachers in a program for disabled children (see Chapter 48).

Mari also told Angel's mother something about experimental alternatives, including intensive "massage therapy." The PROJIMO team had learned about this from a visiting massage therapist, Marybetts Sinclair. Although they could not promise improvement and the therapy was described as controversial, Angel's mother was eager to try it. Because Marybetts would be visiting again in a few weeks, they invited Angel and his mother to return at that time.

Innovative management of muscular dystrophy: massage therapy combined with physical therapy. The controversial new treatment for muscular dystrophy mentioned above has been promoted by a self-made therapist named Meir Schneider, who now practices in San Francisco, California. Schneider claims that an intensive program of massage therapy can halt the progression of muscular dystrophy and help to return lost muscle strength. Although many medical professionals are skeptical of Schneider's claims, Marybetts Sinclair, the massage therapist who occasionally volunteers at PROJIMO, has shown the team documents and films supporting his approach. Everyone agreed that perhaps it was worth a try.

A flexible schedule was developed combining therapeutic massage and physical therapy. They began with brief sessions and planned to gradually build up to several hours a day. The challenge was to make the experimental approach interesting, varied, and fun enough for Angel to accept and enjoy it. Sessions of massage followed by exercise games were followed with play on the swings, rocking horses, and other equipment on the outdoor Playground for All Children. To encourage interaction with a variety of people (and to divide up the work), nearly a dozen disabled and non-disabled persons were recruited to help.

The therapeutic massage, in keeping with Schneider's recommendations, consisted of gentle circular motions with the finger-tips over the whole body, concentrating on the most important and affected muscles. At first - as predicted - the boy was fearful of being touched by anyone but his mother. But his helpers were gentle and his mother also took part. The massage was so soothing that the boy gradually relaxed and began to enjoy it. By the third day he was eager for more.

Exercise activities, mostly through play, were combined with and followed the massage. These were designed to encourage a full range of motion, as much as possible through active muscle use, yet without causing fatigue. Simple games were devised, inviting the boy to touch or hit another person's hand or to kick a ball with his outstretched foot. Each time, he was encouraged to stretch a little farther or reach a little higher. He would proudly count how many times he could repeat each action. (Thus, his counting skills increased along with his physical skills.)

Gangsters as therapists.

Although at first many persons at PROJIMO assisted with Angel's therapy, after a few days fewer people arrived to take part. Among those who showed greatest persistence and concern were some of the "gangsters" and street youth who had been disabled in gun fights. Day after day, three paraplegic young men would circle the couch on which Angel lay, gently providing massage and playful exercise. Angel gradually grew comfortable with them, laughing with delight at the games.

These young men clearly took pride and joy in helping little Angel, and in seeing him respond so enthusiastically to their efforts. It was good therapy for everyone.

MARIO had grown up as a street child and, since boyhood, had trafficked in and used drugs. In his 20s he decided to turn over a new leaf. He married and settled down on a ranch. But old gang rivalry caught up with him in the form of a drive-by shooting. The same bullet which left Mario paraplegic passed through his baby daughter in his arms. Weeks later, in revenge, his brothers captured the culprits. From his wheelchair, Mario watched as his bothers tortured them to death.

In retrospect, Mario does not try to justify this action, but sadly explains: "They killed my baby."

For all that, Mario has a gentle side, a depth of caring that is sometimes born of pain. At PROJIMO, where he stayed for a long time while his deep pressure sores gradually healed, Mario learned carpentry skills and began to help in the wood-working shop.

In time, Mario became a skilled craftsperson, making special seating and personalized equipment for children with special needs. He was quite creative. But the main reason that his innovations often turned out well was because he worked so closely with the child and his parents. Children liked him because he listened to them and related to them on their terms. He no longer had interest in maintaining the macho (manly) distance and toughness so typical of grown-up males. He'd had enough of all that.

With Angel, Mario was both imaginative and creative - and playful in a non-threatening way. He was constantly coming up with new ideas to turn Angel's therapy into games. Angel loved it, and became very attached to Mario.

Here are some of the ideas that Mario and his co-workers came up with to motivate Angel and to turn his therapy into play.

The leaf-on-a-stick balancing act, to improve gait.

Although part of Angel's side-to-side pendulum-like gait was due to reduced muscle strength at the sides of his hips, the weakness and outward (varus) collapse of his ankles also was a factor. After Raymundo custom-fitted him with light-weight plastic ankle-braces (AFOs, see page 86), his gait improved. When prompted, Angel could walk without lurching as much from side to side. But, partly due to habit, he would quickly fall back into the old wobbly pattern.

To help him learn to walk without lurching so much from side to side, Mario invented a simple game.

Angel would hold a thin pole upright with a mango leaf bent over its tip. The boy would then try to walk across the room without the leaf falling. To do this, he had to walk smoothly, keep his body steady, and not lurch sideways. When he succeeded (as he did more and more often) everyone clapped. After a few days, Angel's gait showed noticeable improvement, even when he was not playing the game. He also held his head higher.

The truck-under-the-bridge game - to exercise the belly and back.

To help him use his stomach and back muscles, the PROJIMO team asked Angel to lie first on his belly, then on his back, and arch his body upwards. To turn this into a game, Mario asked a group of school children in the toy shop to make a toy truck loaded with brightly colored blocks of different heights.

Angel at once fell in love with the truck ... and the exercises that came with it. As Angel lay on his back, Mario or another one of the therapy helpers would drive the truck in circles around Angel. They would toot loudly as the truck approached his mid-section. At the toot, Angel would arch his body upwards to let the truck pass under the "bridge" formed by his body. When this game began, Mario started with shorter blocks so that Angel would not have to lift very high. But as his ability to lift his body increased, Angel helped Mario to load the truck with taller blocks. This gave the boy more of a challenge. Angel enjoyed the game and did his best to "lift the bridge" for the tallest truck-load of blocks.

RESULTS:

On evaluating the therapeutic activities that were used with Angel, it is important to consider their effect on the whole child - physically, emotionally, and socially - not just the specific objectives that the activities were designed to meet.

Physically, the combination of Angel's massage therapy, exercise, and increased activity appeared to have a limited but positive effect. During two weeks at PROJIMO, the boy's gait improved visibly. There were also gains in his capacity to do things that involve lifting and moving different parts of his body.

After Angel returned to his home, his mother continued with the massage and exercise games. When Angel came back to PROJIMO 3 months later, many people commented that his walking had improved even more.

We still do not know the long-term outcome. Despite apparent short-term improvements, we can not presume that progressive muscle loss has been reversed or halted. Rather, we suspect that the plentiful stimulation and modest (non-fatiguing) use of under-used muscles helped put his body in more optimal condition, within its given stage of deterioration. It stands to reason that, as the dystrophy advances, reduced activity will add to the degenerative process. By contrast, keeping the body in its best possible physical shape may slow muscle loss and bring at least temporary improvement in body function.

Emotionally and socially, Angel improved enormously. During his stay at PROJIMO, he changed from a whiny, clinging little boy who feared everyone but his mother, into a playful child who enjoyed the closeness and attention of other people.

Angel's physical condition will probably continue to deteriorate, possibly more slowly than it might have otherwise. But his mind and spirit will continue to develop - perhaps more openly, fully, and happily than they might have without the warm, friendly touch of folks like Mario at PROJIMO.

In the last analysis, perhaps the best indicator of an activity's success is the smile factor. Certainly, Angel smiles more than he used to!

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WARNING: Though the boy in this photo is smiling now, his poorly adjusted crutches may cause more disability later. With his elbows so bent, he cannot support his weight on his hands, and so he supports himself under his arm-pits. This can damage nerves and gradually paralyze his hands. See the suggestions on pages 12 and 117 ... THE SMILE MUST NOT BE THE ONLY MEASURE OF SUCCESS.