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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.
Table of Contents
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
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