Everyday Life with ALS: A Practical Guide Everyday Life with ALS: A Practical Guide Published and distributed by the MDA ALS Division MDA Publications Department © 2005, 2010 Muscular Dystrophy Association Inc. Everyday Life with ALS: A Practical Guide 3 Everyday Life with ALS: A Practical Guide Published by MDA ALS Division 3300 E. Sunrise Drive Tucson, AZ 85718 R. Rodney Howell, M.D., Chairman of the Board Gerald C. Weinberg, President & CEO als.mda.org Copyright © 2005, 2010 Muscular Dystrophy Association Inc. All rights reserved No part of this book may be reproduced in any form or by any means without the prior written permission of the publisher, excepting brief quotes used in connection with reviews written specifically for inclusion in a magazine or newspaper. Free to families of those with ALS who are registered with MDA. $15 for others and $20 for international orders (includes Canada). Contact
[email protected]. 4 ACKNOWLEDGMENTS This book is a revision and expan- experts who work with MDA/ALS centers sion of ALS: Maintaining Mobility, was also invaluable. We’re deeply grate- A Guide to Physical Therapy and ful to: Jeff Edmiaston, M.S., CCC-SLP Occupational Therapy, which was pub- (speech-language pathologist), Barnes lished by the MDA/ALS Center at Baylor Jewish Hospital Rehab Department, College of Medicine in Houston and St. Louis; Lyn Goldsmith, R.N., B.S.N., MDA in the early 1980s. The authors clinical research nurse/coordinator, were the late Vicki Appel, R.N., ALS Department of Neurology, Eleanor and Clinic Coordinator, along with Melinda Lou Gehrig MDA/ALS Research Center, Callendar, physical therapist, and Susan Columbia University Medical Center, New Sunter, occupational therapist.