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There are several excellent books for family caretakers and healthcare professionals on managing pediatric neuromuscular disease as well as the lifelong, progressive needs of adults with NMD. Guide to the Evaluation and Management of Neuromuscular Disease (Hanley & Belfus, Inc., 1999), by John R. Bach, M.D., is one, as are Raising a Handicapped Child: A Helpful Guide for the Parents of the Physically Disabled (Ballantine, 1991) and Raising a Child with a Neuromuscular Disorder (Oxford University Press, 1999), by pediatrician Charlotte Thompson, MD, director of the Center for Handicapped Children and Teenagers in San Francisco, CA.
Pain is a side-effect of NMD that often goes untreated. The American Chronic Pain Association (ACPA) is an international non-profit, self-help organization that offers educational materials and peer support groups to help individuals live fuller lives in spite of chronic pain. http://www.theacpa.org/
COPD on medline plus - Information about Chronic Obstructive Pulmonary Disease. Contents include: General/Overviews, Anatomy/Physiology, Clinical Trials, Coping, Diagnosis/Symptoms, Disease Management, Nutrition, Rehabilitation Research, Specific Conditions/Aspects and Treatment.
