Amyothropic Lateral Sclerosis: A Guide for Patients and Families

Since publication of the first edition of this book, the understanding and treatment of ALS have changed dramatically. The many puzzles of this disease are being steadily solved. One cause of familial ALS has been identified, and the mechanisms of motor neuron cell death are much better understood. The FDA has approved riluzole, the first drug available for the treatment of ALS. Additional drugs are being tested and others are on the horizon. This comprehensive guide covers every aspect of the management of ALS. Beginning with discussions of clinical features of the disease, diagnosis, and an overview of symptom management. Major sections deal with medical and rehabilitative management, living with ALS, managing advanced disease, end-of-life issues, and resources that can provide support and assistance. Regardless of their views about long-range events, everyone dealing with the reality of ALS wants to know what to do now. Issues that they have or will need to deal with include: * whether to participate in therapeutic trials * the role of rehabilitation treatments * the use of riluzole (Rilutek), as well as new experimental preparations and drugs that have been approved for some other disease and are being used in ALS

Table of Contents:
Amyotrophic Lateral Sclerosis: An Overview What is Amyotrophic Lateral Sclerosis?; The Clinical Features and Prognosis of ALS; The Diagnosis of ALS; Treating the Symptoms of ALS; The Medical and Rehabilitative Management of ALS; A Comprehensive Approach to Managing ALS; Rehabilitation Issues; Physical Therapy; Occupational Therapy; Wheelchair Selection; Managing Communication and Swallowing Difficulties; Maintaining Optimum Nutrition; Pulmonary Management; Life Support: Realities and Dilemmas; Clinical Therapeutic Trial for ALS; The Design of Clinical Trials; The ALS Patient Care Database; Living with the Reality of ALS; Cultural Effects on ALS; The Caregiver's Experience; Sharing the Experience of ALS: Patient and Family Support Groups; Meditation and ALS; Living with ALS: Quality of Life Issues; Psychological, Social, and Spiritual Factors; Quality of Life Issues and Treatment Goals; Managing Advanced Disease and End-of-Life Issues; Legal and Ethical Issues; Financial Realities; Home Care Agencies; Palliative Care: The Management of Advanced Disease; Hospice Care; Mourning; Where You Can Turn to For Help; The Role of the National Voluntary Health Organizations; Resources and Support Services; Index

Review :
"...well written and avoids jargon and highly technical language. It would serve as a useful introduction to clinicians who are dealing with ALS for the first time as well as a guide to patients and families." -- Physical Therapy, Elizabeth H. Littell, PT, PhD, January 2002