ACKNOWLEDGMENTS

This book is a revision and expansion of ALS: Maintaining Mobility, A Guide to Physical Therapy and Occupational Therapy, which was published by the MDA/ALS Center at Baylor College of Medicine in Houston and MDA in the early 1980s. The authors were the late Vicki Appel, R.N., ALS Clinic Coordinator, along with Melinda Callendar, physical therapist, and Susan Sunter, occupational therapist.

Their pioneering work was an essential and solid foundation for the creation of this volume, and a significant number of the original illustrations from that book are found here, and are reprinted with permission.

We’re especially indebted to the Deana and Sheldon Katz Fund for an early grant that enabled MDA to inaugurate this project. DynaVox Technologies, J.H. Emerson Co. and Permobil also provided sponsorship, without which this book wouldn’t have been possible.

The contents were carefully reviewed by a number of ALS experts. Primary among them were Valerie Cwik, M.D., MDA’s Medical Director; Stanley Appel, M.D., director of the MDA/ALS Center at Methodist Hospital in Houston and a member of MDA’s Board of Directors; and Peggy Ingels Allred, physical therapist, clinical evaluator, Department of Neurology, Baylor College of Medicine, Houston.

The input of several other professional experts who work with MDA/ALS centers was also invaluable. We’re deeply grateful to: Jeff Edmiaston, M.S., CCC-SLP (speech-language pathologist), Barnes Jewish Hospital Rehab Department, St. Louis; Lyn Goldsmith, R.N., B.S.N., clinical research nurse/coordinator, Department of Neurology, Eleanor and Lou Gehrig MDA/ALS Research Center, Columbia University Medical Center, New York; Jackie Montes, M.A., P.T., clinical coordinator and physical therapist at the Gehrig center at Columbia; Jerold E. Reynolds, Ph.D., registered respiratory therapist and respiratory care practitioner, associate professor of neurology, Ohio State University, Columbus; Jeanine Schierbecker, M.H.S., P.T., Washington University School of Medicine, Department of Neurology, St. Louis; Laurie Sterling, M.S., CCC-SLP, Baylor; and Marilyn Trial, OTR, Baylor.

At MDA, special guidance was offered by Director of Health Care Services Michelle Morgan; and ALS Health Care Service Coordinators Debbie King in St. Louis; Kathy Peters in Shawnee Mission, Kan.; and Anne Swisher in Houston (thanks especially for the help checklist in Chapter 2).

We gratefully acknowledge Christopher and Reda Rice of Houston, 2004 and 2005 co-chairpersons of MDA’s ALS Division, and Paul and Helen Magoon and Sandra Hansen of Tucson, Ariz., for posing for photos. Those photos were taken by Bobby Bedient and James S. Wood.

All of the chapter opening photographs and many others in this book feature people with ALS. Other photos depict people who have other neuromuscular diseases in MDA’s programs.

Thanks also go to these companies for supplying photographs used here: Ableware by Maddak; Adrian’s Closet; Bruno; Diestco; Duralife; DynaVox; EZ Accessories; Forde’s Functional Fashions; Grabit; InterAct; Invacare; J.H. Emerson; Kensington; Keybowl; Liberty Motors; Lubidet; Madentec; Magitek; No Boundaries/Tzora; Open Sesame; Permobil; Prairie View Industries; Premier Bathrooms; Prentke Romich; Quickie by Sunrise Medical; R.D. Equipment; Respironics; Rolli-Moden; SafeTek International; Spec-L; Supracor; SureHands Lift & Care Systems; The Emergency Phone; TiLite; Touch Turner; United Security Products; and Völker.

Everyday Life With ALS: A Practical Guide
If you have ALS, or care for someone who does, this practical guide will answer many of your questions about equipment, therapies and accessibility that arise over the course of the disease.