ALS is not a curable disease, but it is a treatable one. Treatments are now available that can make a major difference in prolonging life and enhancing the quality of life for people with the disease and there are treatments for many of the symptoms of ALS that can help ease its burden. Multidisciplinary teams in specialised ALS centres are providing top quality care and comprehensive rehabilitation for persons with ALS. In spite of the progressive nature of this disease and its clear tendency to shorten life, the momentum of research in this disease is expanding dramatically and numerous clinical trials are testing promising new therapies. Our understanding of the basic causes of ALS is expanding gradually. The substantial resources of patient advocacy groups such as the Amyotrophic Lateral Sclerosis Association and Muscular Dystrophy Association provide tremendous help and support for people with ALS and their families. Although the diagnosis of ALS can initially be devastating, the vast majority of people discovering new courage from within to battle this disease and live life with vigour and enthusiasm.
The information in this book will prove useful to people with ALS and their families both in managing the disease and living within its limitations.
Robert G. Miller, MD - Dr. Robert G. Miller is Director of the Forbes Norris MDA/ALS Research Center at the California Pacific Medical Center in San Francisco; Clinical Professor of Neurology in the Department of Neurology at the University of California, San Francisco; Clinical Professor of Neurology and Neurological Sciences in the Department of Neurology at Stanford University Medical School; and Director of Neuromuscular Research and Chairman of the Department of Neurosciences at California Pacific Medical Center (CPMC) in San Francisco. He is the author of nearly 200 scientific articles on neuromuscular disease and ALS, and chairs the Medical Advisory Board of the ALS CARE program, a North American ALS patient database project designed to enhance the standard of care for people with ALS.||Dr. Deborah Gelinas is the Clinical Director of the Forbes Norris MDA/ALS Research Center. She is the principal investigator for several ongoing clinical drug trials in ALS, sponsored by both federally funded agencies and pharmaceutical companies. She has received numerous awards throughout her career that include the Outstanding Physician Scientist Award of the California Pacific Medical Center and an Army Meritous Service Medal.|Patricia O'Connor, RN graduated from the City College of New York with a Bachelor of Science in Nursing. She is the nurse case manager and coordinator of the Multidisciplinary Clinic at the Forbes Norris MDA/ALS Research Center in San Francisco, CA. Ms. O'Connor has extensive experience in the fields of rehabilitation and case management and has specialized in the care of ALS patients since 1997
Foreword; Acknowledgements, Preface; Section 1: Introduction 1. What is Amyotrophic Lateral Sclerosis?; 2. The Diagnosis of ALS; 3. Clinical Trials and Finding New Drugs for ALS; Section 2: Managing the Symptoms of ALS; 4. A Multidisciplinary Approach to Care; 5. Quality of Life and Psychosocial Issues; 6. Treating the Symptoms of ALS; 7. Nutrition and Swallowing; 8. Speech, Communication, and Computer Access; 9. Staying Mobile; 10. Breathing and Sleeping; 11. Thinking and Behavioral Changes; 12. Palliative Care; Section 3: Resources; 13. Finding a Cure and Improving Living with ALS: How the ALS Association Helps Patients and Families; 14. The Muscular Dystrophy Association (MDA), ALS Division; 15. Negotiating the Insurance Maze; Section 4: Appendix Resources, Index.
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