Sam Maddox - Paralysis Resource Guide

Third Edition

by Sam Maddox

Paralysis Resource Guide

Third Edition

by Sam Maddox

2013, 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 book was produced by the Paralysis Resource Center (PRC) through a cooperative agreement with the Centers for Disease Control and Prevention (award No. 1U59DD000838). The contents of this book are solely the responsibility of the PRC and do not necessarily represent the official views of the Centers for Disease Control and Prevention.

Cover photograph by Timothy Greenfield-Sanders

Book design by Michael Kellner

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 978-0-9726831-3-5

For information or to request additional copies of this book:

Paralysis Resource Center

636 Morris Turnpike, Suite 3A

Short Hills, New Jersey 07078

Toll-free 1-800-539-7309

email c/o infospecialist@ChristopherReeve.org

www.paralysis.org

W ELCOME TO THE THIRD EDITION of the Paralysis Resource Guideits up-to-date, bigger, deeper and heres hoping, more useful than ever. Allow me to recognize key people at the Christopher & Dana Reeve Foundation, including Executive VP/Director of Research Susan Howley and Senior VP, Marketing and Communications Maggie Goldberg, Niketa Sheth, Senior VP/Quality of Life, and Steve Coleman, VP for the Military & Veterans and the Peer & Family Support Programs. PRC Senior Director Sheila Fitzgibbon and Director of Special Initiatives Douglas Landsman helped fact-check and bulletproof the text. Foundation staffers Rebecca Sultzbaugh, Donna Valente, Jenn Hatfield, Beth Eisenbud, Kathy McArthur, Patricia Stush, Katie Spiegel, Bernadette Mauro and the PRC team of Information Specialists also helped with the revision.

Very special thanks and kudos to Christopher Voelker, whose portraits grace this edition with personality and purpose. Mr. V is indeed a master of light, shadow and stagecraft. And thanks to Melanie Manson, who is married to Chris, for the art and craft of hair and makeup.

Thanks very much to Michael Kellner for the coherent and accommodating book design. Thank you Kate Lapin for editorial services.

This book is made possible by the support of the Department of Health and Human Services (HHS), Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD). Many organizations 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 Chris and Dana is embodied in the pages of this book: Life is dear, choice is good, hope is irrepressible.

SM
Thousand Oaks, California

H ELLO, 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 of course loved ones and caregiverspeople 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 suddenly 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 1.25 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 its 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 recreation, specialized assistive equipment and automobiles, and key information to help navigate the healthcare and insurance systems.

Youll 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 numerous Quality of Life grants through the PRC and the Christopher & Dana Reeve Foundation to support such organizations around the country.

If you dont find what you need here in the book, be sure and visit the PRC Website, www.paralysis.org. If you prefer to speak to a trained information specialist, please contact us by phone (toll-free 1-800-539-7309) or email (infospecialist@ChristopherReeve.org) 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 convinced that they will succeed in developing treatments for acute and chronic paralysis. To learn even more about promising research, and how to support the Foundations mission, visit the website www.ChristopherReeve.org

THE PRC STAFF

W ELCOME 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 Christopher & Dana Reeve Foundation Paralysis 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.