A Teacher's Guide To Duchenne Muscular Dystrophy by Patricia B. Porter, Ph.D Colin D. Hall, M.D. Faye Williams, M.A.

The Team Approach to Medical Care

In order to provide quality treatment and care of the individual with Duchenne muscular dystrophy, a comprehensive and individualized approach is required. The health care team may include physicians (neurologist and orthopedist, nurse, social worker, rehabilitation counselor, clinic-school liaison, physical therapist and occupational therapist. Roles may overlap according to the needs of each student and situation. Health care should be a coordinated effort. Communication among team members is vital. The roles of health care team members are described below.

Physician

Responsibilities of a physician on a health care team are many: providing direct patient care and educating medical colleagues, allied health professionals, the lay public and, most importantly, individuals affected by Duchenne muscular dystrophy and their families. One of the most significant roles of the physician is as coordinator, to obtain and utilize information and services from various allied health professionals.

The physician is responsible for diagnosis and medical management. The physician works with the nurse to direct patient care, the physical and occupational therapists to develop an individualized muscle care and adaptive living skills program, and the psychosocial staff to ensure the individual's and family's emotional well-being at home and in the community.

Nurse

The nurse has a central role in coordinating daily operation of the health care team. Because the nurse provides a critical element of continuity between outpatient and inpatient services when hospitalization is required, a close relationship often develops between the nurse, the individual affected by Duchenne muscular dystrophy and the family. As a result of such close relationships, the nurse can often recognize and inform other team members about psychological, social and economic conditions that could affect overall management.

The nurse can provide support for an individual affected by Duchenne muscular dystrophy and his family during significant events such as diagnosis, alterations in treatment and death. Experience with health care problems that frequently occur in the disease, plus personal knowledge of each individual treated in clinic, can allow the nurse to facilitate the organization of care provided.

The nurse is also an educator -- to the individual with Duchenne muscular dystrophy and his family as well as to public health nurses and other professionals. The nurse can ensure that reasons for hospitalization and other modes of medical management are understood.

Psychosocial Staff (Social Worker, Rehabilitation Counselor, Psychologist)

Duchenne muscular dystrophy has significant psychosocial implications, particularly during potential developmental crises such as diagnosis, alterations in therapy, adolescence and death. The psychosocial members of a health care team can evaluate each family's and individual's ability to cope with issues related to Duchenne muscular dystrophy and determine appropriate therapeutic intervention when needed. Referral to a professional therapist outside of clinic or to support services available in the community may be helpful.

In addition to reinforcing the importance of medical care, psychosocial team members can help the family and individual with Duchenne muscular dystrophy function at an optimum emotional level. Because of the extensive amount of attention required by the disease and its effects upon a growing child and adolescent, relationships among siblings and parents can be affected. By providing education, support and assistance in locating community resources, problems can be reduced for the entire family.

The psychosocial staff members also assist the family and those with Duchenne muscular dystrophy in obtaining financial assistance through appropriate state and other programs. By providing guidance in education, community involvement and planning for the future, the psychosocial team members help those with Duchenne dystrophy prepare for the greatest possible degree of independent living.

Clinic-School Liaison

The majority of individuals with Duchenne muscular dystrophy are adolescents or younger and should be involved in some type of educational program. A trained professional familiar with general and special education programs, school law and teaching methods can be an invaluable asset to a family and to the school. By helping to educate school staff and student peers, teachers can encourage understanding and healthy adaptations that keep the student with Duchenne muscular dystrophy involved in school activities.

As liaison between clinic and school, the teacher can encourage appropriate annual educational evaluations and adequate school placement with consideration of the student's continually changing abilities as the disease progresses.

Physical Therapist

There is currently no treatment that can stop or reverse the progression of muscle degeneration in Duchenne muscular dystrophy. However, maintenance of muscle strength through physical therapy can allow individuals to function at an optimum physical level and avoid premature contractures and joint stiffening. Regular evaluations are necessary to provide information for development of an individualized physical therapy program.

In addition to direct care, physical therapists instruct family members, young adults with Duchenne muscular dystrophy, health care providers and school personnel in proper techniques for daily physical therapy exercises.

Occupational Therapist

As Duchenne muscular dystrophy progresses, adaptive equipment becomes increasingly valuable in maintaining an individual's independent functioning. Assistance with activities and recreation can be provided by the occupational therapist.

Occupational and physical therapists work closely in evaluating muscle strength, abilities and limitations. The physical therapist can recommend exercises that will continue to maintain flexibility and strength while taking into consideration adaptive equipment recommended by the occupational therapist.

The need for adaptive equipment may cause the patient to be more aware of his decreasing physical abilities. The emotional support of the occupational therapist, while encouraging the use of equipment, can greatly enhance the overall success of medical management.

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