It's been said that everyone's life is worth a novel. Indeed, the stories we each live are marked by a wide variety of people, actions, circumstances, and themes. People come in and go out of our lives every day. When we are lucky, some of those we encounter become positive influences on how we experience life. For those of us at The UI Institute's HealthPlex Clinical Services, such an encounter began with a phone call on February 15, 1995.
HealthPlex, an outpatient treatment facility in Palm Beach Gardens, FL, was founded in 1985 by Dr. John E. UI to improve the quality of life for people with pain and dysfunction resulting from brain, spinal cord, or other central nervous system injuries. The staff is a diverse group of professionals, including osteopathic physicians, doctors of chiropractic, psychologists, psychotherapists, physical therapists, and massage therapists. All are highly trained in their specialties and are cross-trained in a myriad of complementary therapies using a body-mind approach.
The phone call came from the International Services of Hope (ISOH), a non-profit medical relief agency based in Waterville, OH, that specializes in bringing Third World children to the United States for medical treatment not available in their own country. The organization has had remarkable success in securing life-saving and life-enhancing surgical and medical care for physically impaired or compromised children, all donated. One of the patients in its Children's Medical Rehabilitation program was about to provide us with the opportunity to enhance his life through an intensive multi-disciplinary therapy program. In the process, out lives were equally enhanced by his and his mother's extraordinary sense of optimism, hope, playfulness, and gratitude.
Born as a premature infant in Moscow, Russia, on February 7, 1991, Onar Bargior suffered severe cerebral circulation impairment, intracranial hemorrhage, and encephalopathy. At age 1, Onar was diagnosed with infantile cerebral paralysis, spastic diplegia, and hypertension-hydrocephalic syndrome. In March 1992 he was registered as an invalid who could neither stand nor sit without assistance. Medical treatment for Onar was limited and sporadic, and he spent much of his life lying on a bed in a one-room apartment that he shared with his mother and grandparents.
Onar was identified by ISOH and brought for treatment at the Division of Pediatric Neurosurgery of New York University's Medical Center. During October 1994, he was evaluated by Dr. Rick Abbott, professor of pediatric Neurosurgery, and his clinical team. They determined that Onar was not an appropriate candidate for surgery and subsequent rehabilitative care because of the extreme degree of Onar's spasticity and his severe psychomotor delays. Onar's birth trauma and accompanying cerebral palsy had left his body too rigid for him to learn to crawl or walk; further, he had severely restricted use of his right hand.
Cerebral palsy is a broad term used to describe a number of motor disorders resulting from prenatal developmental abnormalities, or perinatal or postnatal central nervous system damage occurring before age 5 years, and characterized by impaired voluntary movement. The term is also used as a therapeutic classification for children with nonprogressive spasticity, ataxia, or involuntary movements who require complex training and therapy to attain their optimum potential.
Onar's mother's hopes were shattered when she learned that surgery was denied him. Acutely aware of his need for some treatment, ISOH began to explore the availability of other medical care for Onar. Their investigative efforts resulted in consultation with another New York physician who suggested the innovative multi-disciplinary care of HealthPlex. On February 15, Linda Greene, R.N., an administrator at ISOH Impact, contacted HealthPlex with the plea that it was the "last resort" before returning Onar and his mother to Moscow without assistance.
Thus began a relationship of shared fortune. With experience in treating other patients with brain and spinal cord dysfunction, HealthPlex accepted Onar into two-week intensive therapy program that began on March 13, 1995. Designed for patients with brain and spinal cord disease, dysfunction or injury, this treatment program is built around craniosacral therapy and includes physical therapy, visceral manipulation, acupuncture, massage therapy, family counseling, and education.
The primal modality, craniosacral therapy, is a gentle, non-invasive method of enhancing the functions of the physiological body unit called the craniosacral system. It involves all of the bones of the skull, face and mouth-which make up the cranium-and extends to the lower end of the spine (the sacrum). Manual therapy has proven effective in treating a wide range of medical problems associated with pain and dysfunction.
This system influences the development and function of the brain and spinal cord. An imbalance or dysfunction in the craniosacral system could cause sensory, motor, or neurological disabilities and cause problems such as chronic pain, eye difficulties, scoliosis, motor-coordination impairments, and learning disabilities.
The brain and spinal cord suffer when there is an imbalance in the craniosacral system. Treatment to correct this imbalance is aimed at improving the conditions or the environment in which the brain and spinal cord must do their work. Using a light touch equivalent to the weight of a nickel, the craniosacral-therapy practitioner tests for restrictions in various parts of the craniosacral system that impair the natural movement of fluid within the system. The initial diagnosis and the medical history of Onar's problems suggested an organic etiology with major central nervous system involvement that could benefit from the craniosacral therapy.
Onar and his mother didn't know what to expect when they arrived at HealthPlex. A local agency located a translator. After meeting the other program participants and the staff, Onar was evaluated. Francine Hammond, LMT, L.P.N., one of the therapists who worked with Onar, recalls finding severe restrictions in the dural membrane system-the falx cerecri, falx cerebelli, and tentorium cerebelli membranes inside his skull and dural tube. Hammond also found a sphenoid/basilar compression with a right sheer, ethmoid/frontal restriction and maxillae impaction, restriction in the right temporal, parietal suture, as well as in the coronal suture. There were fascial restrictions in the cervical area including the hyoid, sternocleidomastoid, and the suboccipital triangle muscles. Other fascial restrictions were found in the thoracic inlet, as was rigidity of the entire rib cage. There were respiratory diaphragm restrictions with a visceral component into the stomach and pelvic diaphragm restrictions with compression at L5-S1.
Any stimulation during Onar's first session caused muscle spasms that made his legs rigid and scissored and caused hypertension of his trunk and neck. His arms became rigid with his fists clenched in front of his body. He looked very uncomfortable in the stroller in which his mother transported him. Having almost no hip flexion, it was difficult for him to assume a seated position.
Onar's individualized treatment program involved two or more therapists. Treatment modalities included CranioSacral Therapy, Somato-Emotional Release, physical therapy, counseling, acupuncture, and massage.
At the beginning of the second day of this 10-day program, Onar's mother reported that he had slept well and soundly, whereas before he would awaken three to four times a night. He continued to show tremendous improvement daily, including such changes as increased appetite, decreased spasticity, awakening without crying each morning, and increased range of movement of all joints.
Onar's psychomotor delays were described by professional staffs in Moscow and New York as suggesting Onar had mental retardation. Quite the contrary; Onar was impressive from the very beginning and could communicate through smiles, laughter, and emotional engagement.
At completion of the therapy program, he was able to open his right hand, sit cross-legged, and get up on his hands and knees. The decrease in spasticity also made it easier for him to speak and to eat. As he became more comfortable, he spoke more. It was Russian peppered with English words and phrases.
On entering therapy, Onar moved by log-rolling across the floor. The day that he struggled to push himself up on his knees was a great milestone. He then began reaching for toys and developed the skills he needed to play with stickers, little cars, and trucks.
A clinical psychologist and psychotherapist were on hand to help him and his mother deal with the emotional aspects of his condition and recovery. Psychotherapist Lee Nugan, M.A., says that Maiga, a single mother, was surprised at the support she found in America. In Russia, a woman with a handicapped child is not permitted to work and her child is not allowed to attend school. A teacher would come to their apartment for two hours a week. Their lives were very limited without the opportunity to work or to attend school.
Onar used his toys to play out stories that reflected his life in Russia. One story indicates what Onar had been through in has short life. He spoke about a dog who was locked in a cage. The dog was very hungry. There was killing going on outside, and the dog's life was very grim. He was, in fact, the dog; his experience was all in a small apartment.
The difference between a conventional approach and this course of treatment of cerebral palsy lies in the goal of therapy. Conventional treatment focuses on helping the individual overcome the symptoms of cerebral palsy. These children are usually followed in a hospital setting or a specialty medical center focused on cerebral palsy patients. HealthPlex's goals are to uncover the root causes of the affliction, lessen or remove them, and encourage the body's natural healing process to take over. Patients usually are seen by therapists and physicians up to six times a year for assessment on their progress. Patients who can afford it, or have insurance that will provide it, may receive ongoing therapy, up to three times a week, by a combination of physical, occupational, and speech therapists. Orthopedic surgery and bracing are options.
Physical therapy generally focuses on increasing gross motor activities, decreasing tone, and increasing functional movement through the developmental sequence and home education including handling, exercise, and range-of-motion activities. Fine motor activities, hand-eye coordination, and a home exercise program concentrating on the activities of daily living such as eating, sitting, and bathing are some of the components of an occupational therapy program. Speech therapy assists the patient with language development, reading, speech, and computer-aided communication.
After Onar's second two-week session, he could use his right hand for reaching and grasping objects and, with minimal assistance, was able to get into sitting, quadruped (kneeling), and high-kneeling positions-none of which he was able to perform before coming to the U.S.
Onar continued to receive outpatient cranio-sacral therapy weekly and, during the first week of August, participated in a one-week intensive program for learning-disabled and developmentally delayed youngsters. Overall, his contracted musculature of spasticity has greatly relaxed. His cranial system is moving with greater amplitude and symmetry, which means that Onar's system is operating more efficiently and fluidly, without many of the restrictions within and outside his central nervous system. He is able to sit for longer periods of time, crawl with reciprocal movement, crawl in high kneeling position with moderate assistance, and use his right hand without verbal prompting. He also speaks more clearly and has less spasticity throughout his body. Further, he displays clarity of emotion and obvious projection of love, traits which most children have.
Onar's future depends to a large degree on whether he and his mother can stay in the U.S. Even though Maiga knows that there is less than a 50 percent chance that they'll be allowed to stay permanently, she wants to take the chance and will accept whatever happens. During their time in Florida, they have lived with several families while others have helped by providing food, clothing, and transportation to HealthPlex, which has underwritten his treatment, while individual therapists have donated their time.
Maiga had worried that Onar might not be intelligent enough to get along in the world, but tests have shown that Onar has a fine mind. With opportunities for education, there is no telling what that child can do. He already has contributed in a very special way to the lives of his therapists and friends.
Russell A. Bourne, Jr., Ph.D., is Chief of Staff at The UI Institute HealthPlex Clinical Services, Palm Beach Gardens, FL. He has published and presented internationally in the areas of developmental psychology, hypnotherapy, and mind-body medicine.
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