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PARALYSIS RESOURCE GUIDE PARALYSIS RESOURCE GUIDE FOURTH EDITION by Sam Maddox Paralysis Resource Guide | i PARALYSIS RESOURCE GUIDE FOURTH EDITION by Sam Maddox ©2017, Christopher & Dana Reeve Foundation, all rights reserved including the right to reproduce this book or portions thereof in any form whatsoever except as provided by United States Copyright Law. This project was supported, in part, by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy. Cover photograph by Timothy Greenfield-Sanders The material contained in this book is presented for the purpose of educating and informing readers about paralysis and its effects. Nothing contained herein should be construed as medical diagnosis or treatment advice. This information should not be used in place of the advice of a physician or other qualified healthcare provider. If any questions arise while reading this book, the PRC strongly recommends contacting a physician or the appropriate healthcare provider. ISBN 978-0-9960951-5-0 FOR INFORMATION OR TO REQUEST ADDITIONAL COPIES OF THIS BOOK: Paralysis Resource Center 636 Morris Turnpike, Suite 3A Short Hills, New Jersey 07078 Phone: 973-467-8270 Toll-free: 1-800-539-7309 Email: [email protected] www.ChristopherReeve.org ACKNOWLEDGEMENTS Welcome to the Fourth Edition of the Paralysis Resource Guide. We hope you find its content educational, practical and in some cases, life-changing. This publication would not have been possible without the steadfast leader- ship of the PRC Senior Director Sheila Fitzgibbon and our author Sam Maddox. Special thanks to my colleagues, Reeve Foundation staff members Rebecca Sultzbaugh, Donna Valente, Christopher Bontempo and Bea Torre as well as Patricia Correa, Beth Eisenbud and Kathy McArthur of the Information Specialist team, all of whom contributed to the editing, proofreading and bulletproofing of this revision. Very special thanks to Bernadette Mauro for her thorough editing skills and fact-checking. Sincere appreciation to Leslie McCullough for writing our profiles of individuals living with paralysis as well as to Brenda Patoine who updated Chapter 6. This book is made possible by the support of the Department of Health and Human Services (HHS), Administration for Community Living (ACL). Many orga- nizations in the disability community provided resources as we reach for the highest standards of verisimilitude. The Paralysis Resource Guide is dedicated to the memories of Christopher Reeve and Dana Morosini Reeve. They lived life fully and fearlessly, with purpose and passion. The spirit of Christopher and Dana is embodied in the pages of this book. “Look for ways to let your light shine, but don’t be afraid to occasionally be in the dark.” – Dana Reeve Maggie Goldberg Vice President, Policy and Programs Short Hills, NJ TABLE OF CONTENTS 1 BASICS BY CONDITIONS 1 Amyotrophic Lateral Sclerosis 2 Arteriovenous Malformation 6 Brachial Plexus Injury 8 Brain Injury 8 Cerebral Palsy 13 Friedreich’s Ataxia 16 Guillain-Barré Syndrome 18 Leukodystrophies 19 Lyme Disease 20 Multiple Sclerosis 21 Neurofibromatosis 26 Post Polio 27 Spina Bifida 30 Spinal Cord Injury 33 Spinal Cord Injury Research 38 NeuroRecovery Network 59 Spinal Muscular Atrophy 68 Spinal Tumors 69 Stroke 73 Transverse Myelitis 78 2 HEALTH MANAGEMENT 81 Autonomic Dysreflexia 82 Bladder Management 84 Bowel Management 89 Deep Vein Thrombosis 93 Depression 94 Fatigue 96 Chronic Pain 99 Respiratory Health 104 Skin Care 111 Spasticity 114 Syringomyelia | Tethered Cord 117 Coping & Adjustment 119 Peer & Family Support Program 125 Alternative Medicine 127 Fitness and Exercise 130 Nutrition 135 Sexual Health/Fertility 139 – For Men 139 – For Women 144 PROFILES: THE IMPACT OF THE REEVE FOUNDATION 149 3 ACUTE CARE AND REHABILITATION 173 4 ACTIVE LIVING 187 Recreation Sports 189 Team Sports 205 Arts and Creativity 210 5 TRAVEL 213 6 TOOLS AND TECHNOLOGY 229 Wheelchairs, Seating and Positioning 232 Assistive Tools & Technology 249 Environmental Control 255 Computing & Communicating/Wireless Connectivity 256 Home Modification & Accessibility 262 Adaptive Driving 267 Clothing 272 Service Animals 273 7 WORKING THE SYSTEM 275 Basics of the ADA 277 Social Security and Medicare 280 Getting Work 287 Financial Planning 294 8 MILITARY AND VETERANS 297 9 KIDS’ ZONE 327 10 CAREGIVING 339 RESOURCES 349 GLOSSARY 353 INDEX 371 PRC WELCOME HELLO AND WELCOME to the Paralysis Resource Guide. This book, created by the Christopher & Dana Reeve Foundation Paralysis Resource Center (PRC), offers comprehensive information and connections. Our goal is to help you find what you need to stay as healthy, as active and as independent as possible. The book serves the full community of people affected by paralysis, including loved ones and caregivers—people who know how paralysis can be a family issue. Our founders, Christopher and Dana, understood how frightening it is to suddenly become paralyzed. Being active one day and immobile the next thrusts you into an entirely new existence. The changes are enormous and often overwhelming. First, let us assure you that you are not alone. In the United States, there are 1.4 million people living with paralysis caused by spinal cord injury, and hundreds of thousands of others with paralysis caused by other types of trauma or disease. Although it’s a club no one would choose to join, there are people who have gone through similar situations who are eager to help you maximize your health and well-being. The PRC was created to provide information services and resources on the full range of topics related to paralysis, including specific health and clinical information on the various conditions that cause paralysis, whether by stroke, trauma or disease. We have strong ties with many national organizations to make sure you get the most relevant and reliable information. Paralysis is much more than a medical issue, of course. The PRC hopes to encourage you to be active and to participate in your community as much on your own terms as possible. We have resources available on travel and recre- ation, specialized assistive equipment and automobiles, and key information to help navigate the healthcare and insurance systems. You’ll also find information on a multitude of organizations around the country that offer programs to promote independent living for children and adults with paralysis. You will find numerous listings in this book devoted to accessibility, health promotion, advocacy, research, and more. We have funded thousands of Quality of Life grants through the PRC and the Christopher & Dana Reeve Foundation to support such organizations around the country. vi | Christopher & Dana Reeve Foundation KEN REGAN/CAMERA 5 If you don’t find what you need here in the book, be sure and visit the website, www.ChristopherReeve.org. If you prefer to speak to a trained Information Specialist, please contact us by phone (toll-free 1-800-539-7309) or email ([email protected]) and we will research your question for you. Finally, and perhaps most importantly, we want you to know that paralysis is not a hopeless condition. Scientists are making steady progress in deciphering the complexities of diseases and injuries to the brain and spinal cord; we are con- vinced that they will succeed in developing treatments for acute and chronic paralysis. To learn even more about promising research, and how to support the Foundation’s mission, visit the website www.ChristopherReeve.org — The PRC Staff Paralysis Resource Guide | vii MESSAGES Message from the President & CEO Welcome to the Paralysis Resource Guide, a one-stop handbook to help you and your loved ones through the often bewildering world of paralysis. The goals of this book and of the Christo- pher & Dana Reeve Foundation Paraly- sis Resource Center are to improve the lives of millions of people living with paralysis. We offer information you can trust in order to make the best choices for a fulfilling and active life. The Reeve Foundation has over the years invested millions of dollars to support research to restore function in the damaged spinal cord. While we expect the long-term payoff of treatments and cures, we understand the day-to-day challenges of living with paralysis. That’s why we offer tools, services and resources, here and now, through our Quality of Life grants and the Paralysis Resource Center. We also advocate for the rights of people with disabilities; we want you to be armed with the information and knowledge you need to face the world of paralysis with the fierce determination and courage of our namesakes. We have a wonderful, dedicated team here at the Foundation carrying on Christopher and Dana’s vision and keeping their legacy of hope and perseverance alive. But we all know there is much work ahead of us; we have yet to reach our goal of mobility, full participation and independence for all citizens. Until that day, we will continue to pursue today’s care and tomorrow’s cure. Peter Wilderotter President and CEO Christopher & Dana Reeve Foundation viii | Christopher & Dana Reeve Foundation Message from the PRC Director The Paralysis Resource Center was created to provide a comprehensive, national resource to
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