Cover; Half Title; Title Page; Copyright Page; Table of Contents; Preface; SECTION I: PSYCHOSOCIAL ASPECTS OF NEUROMUSCULAR DISORDERS; Impact of Illness on Lifestyle; Methods; Results; Discussion; Conclusion; Living with Amyotrophic Lateral Sclerosis (ALS); Clinical Material; Results; Discussion; Summary; Family Response to Duchenne Muscular Dystrophy; Diagnosis; Cessation of Ambulation; Adolescence; Late Stage of the Disease; Tasks for Adjustment; Challenges; Psychosocial Issues and Case Management in Myotonic Muscular Dystrophy; Muscular Dystrophy: Assessing the Impact of a Diseased State
Human InteractionsThe Impact of Disease on the Individual; The Impact of Illness on "Significant Others"; The Impact of Illness on Health Care Personnel; Responding to the Total Needs of the Patient; Epilogue; Emotional Stress and Multiple Sclerosis; Literature Review; Case Illustrations; Discussion; Living with Multiple Sclerosis: The Gradual Transition; Subjects; Life Transition Theory; Getting the Diagnosis; Living with the Disease; Uncertainty; Managing the Disease; Comparative Testing; Making Meaning; Depression and Adjustment in Friedreich's Ataxia
Charcot-Marie-Tooth Disease: Disorder or Syndrome?What Is It?; The Name; How Disabling?; Age of Onset; How is CMT Inherited?; Diagnosis; Treatment and Cure; Research; Psychosocial Aspects of Charcot-Marie-Tooth Disease in Childhood; Psychosocial Aspects of Charcot-Marie-Tooth Disease in the Adult Patient; Charcot-Marie-Tooth Disease and the Family: Psychosocial Aspects; The Parent; The Child; Concerns of Parents; Impact on the Family; Encouraging Children to Develop Other Abilities; Thoughts of Not Having Children or Limiting the Family; Expenses; Relationship with Spouse
Talking About CMT Within the FamilyLack of Information About CMT; Feelings of Loss; Family Adjustment to CMT; Discussion; Helping Patients Cope with Acute Loss of Neuromuscular Function; Stressors Associated with Neuromuscular Dysfunction; How Patients Can Be Helped to Cope; Case Illustrations; Grief Management by Spouses of Neuromuscular Disease Patients; Variations in Grief Management; The Couple as a System; Whose Hell Is Hotter-Yours or Mine?; SECTION II: CLINICAL AND RESEARCH CONSIDERATIONS; Rehabilitation Concerns in Late-Stage, Ventilator-Dependent Muscular Dystrophy Patients
Onset of Respiratory FailureClinical Course; Other Medical Complications; Functional Considerations in Seating and Mobility; Conclusion; The Ventilator Support of Patients with Neuromuscular Disorders; A Note on Researcher Bias in Working with Terminally Ill Children; Seated Thanks to William Carlos Williams; SECTION III: IMPORTANCE OF SOCIAL SUPPORT; ALS Support Groups: An Update; Sponsorship; Using the Network; Choosing the Variables; Formats: What Do They Look Like?; Summary; Conclusion; Comprehensive Care for ALS Patients and Families; China's Care of the Disabled
Summary
Here is a thoughtful new book for professionals who assist persons afflicted with neuromuscular disorders to help them and their families adapt to lifestyle changes accompanying the onset of these disorders. Health care professionals provide strategies to maintain the psychosocial well-being of children and adults with neuromuscular disorders which, in addition to physical damage, also assault the sense of self and challenge the individual's ability to move and communicate. Chapters describe the psychosocial aspects of a variety of neuromuscular diseases such as Duchenne and myotonic muscular
Bibliography
Includes bibliographical references
Notes
Hoping Strategies for the Amyotrophic Lateral Sclerosis Patient
