1st Edition

Muscular Dystrophy and Other Neuromuscular Diseases Psychosocial Issues

    264 Pages
    by Routledge

    264 Pages
    by Routledge

    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 dystrophy, multiple sclerosis, amyotrophic lateral sclerosis, Friedeich’s ataxia, and Charcot-Marie-Tooth disease. The distinctive characteristics of each disease are examined with special attention given to the natural history, treatment, management, and psychosocial issues of the specific disorder.

    Beyond the clinical and research importance of Muscular Dystrophy and Other Neuromuscular Diseases, it also addresses the anxiety, doubts, and questions felt by patients with chronic progressive disabilities and their families. This helpful guide is unique in the way it features the interaction of professionals in the social services, psychology, religion, and various medical specialties in the care and treatment of these patients. Professionals in all of these disciplines, as well as the patients and families afflicted by these disorders, will benefit from this valuable resource.

    Contents Preface
    • Section I: Psychosocial Aspects of Neuromuscular Disorders
    • Impact of Illness on Lifestyle
    • Living with Amyotrophic Lateral Sclerosis (ALS)
    • Family Response to Duchenne Muscular Dystrophy
    • Psychosocial Issues and Case Management in Myotonic Muscular Dystrophy
    • Muscular Dystrophy: Assessing the Impact of a Diseased State
    • Emotional Stress and Multiple Sclerosis
    • Living with Multiple Sclerosis: The Gradual Transition
    • Depression and Adjustment in Friedreich’s Ataxia
    • Charcot-Marie-Tooth Disease, Disorder or Syndrome?
    • Psychosocial Aspects of Charcot-Marie-Tooth Disease in Childhood
    • Psychosocial Aspects of Charcot-Marie-Tooth Disease in the Adult Patient with Acute Loss of Neuromuscular Function
    • Grief Management by Spouses of Neuromuscular Disease Patients
    • Whose Hell Is Hotter--Yours or Mine?
    • Section II: Clinical and Research Considerations
    • Rehabilitation Concerns in Late-Stage, Ventilator-Dependent Muscular Dystrophy Patients
    • 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
    • Comprehensive Care for ALS Patients and Families
    • China’s Care of the Disabled
    • Hoping Strategies for the Amyotrophic Lateral Sclerosis Patient


    Charash, Leon I.; Lovelace, Robert E.; Claire, Leach F.; Austin, Kutscher H.; Jacob, Goldberg; David, Roye, P.