Successfully Surviving a Brain Injury: A Family Guidebook, From the Emergency Room to Selecting a Rehabilitation Facility

What Others Are Saying about Successfully Surviving a Brain Injury

A brain injury is a devastating, life-altering experience for the patient and the family. As a trauma surgeon for the last thirty years, I see distraught families desperate for comprehensive and easy-to-read information about what the future holds. Successfully Surviving a Brain Injury answers most of their questions in a compassionate and thorough manner. This book is a must read for everyone who wants to confront, understand and overcome the challenges of living with a brain injury.

Lawrence Lottenberg, M.D., Associate Professor of Surgery and Anesthesiology, Trauma Medical Director, University of Florida College of Medicine

Written in a personable style that will make the author’s experience relatable to many readers, Prowe’s book will be a comfort for caregivers seeking to understand their loved ones’ behavior during the recovery process.

Library Journal

Successfully Surviving a Brain Injury is essential reading for family members and friends. The book nicely covers the ups and downs of recovery with a positive and helpful perspective. The very knowledgeable author has done his homework and offers practical information on a broad range of topics, including the emotional aspects of recovery, an important topic which is often neglected.

Jeffrey Kreutzer, Ph.D., Professor of Physical Medicine and Rehabilitation, Neurosurgery and Psychiatry, Virginia Commonwealth University

Successfully Surviving a Brain Injury is a strongly recommended read for anyone dealing with another's brain trauma.

Midwest Book Review

Every family experiencing brain injury should have Successfully Surviving a Brain Injury. It’s written in such a personal way. It’s so comforting and extremely informative.

Tracy Porter, Executive Director of Mothers Against Brain Injury

Following a traumatic brain injury, family members are in a state of shock and confusion. They are immediately immersed in a medical emergency and emotional crisis that will change their lives forever. This is a much needed book for caregivers as they travel the long complicated and uncertain journey toward recovery with their loved ones.

Susan Hansen, COO, San Diego Brain Injury Foundation

This book is a story of love and devotion and a most helpful guide for the families of a brain injury survivor.

Chuck McLafferty, Former President of the Brain Injury Association of South Carolina

This book is a Godsend to families whose lives have suddenly been affected by a brain injury. The author guides readers through the challenges of recovery, shares valuable information, and provides comfort all at the same time.

Deborah D. Palmer, Founder, Brain Injury Connection

I have worked with hundreds of individuals with traumatic brain injury and family members, and I know that Successfully Surviving a Brain Injury represents a reality that so many people face.

Deborah Delgado, Traumatic Brain Injury Project Director for the Disability Rights Network of Pennsylvania

I wish this book had been available when my husband was injured. Having the term brain injury thrown at me with nothing to explain it was terrifying. Garry Prowe spoke with many survivors and caregivers. He tells the story of all of us, and he tells it well.

Cindy Reed, Tampa, Florida

The world of brain injury is foreign and scary. I wish we had Successfully Surviving a Brain Injury after our son’s injury. There are many books on the medical aspects of brain injury, but few about the emotions that accompany it. The assurance that these feelings are normal is so helpful! I hope every critical care hospital has copies of this book.

Deanna Kritch, Elmira, Oregon

My son sustained a brain injury and we were numb as we walked in the fog. Successfully Surviving a Brain Injury would have made such a huge difference in our understanding of brain injury. Most important of all, it would have given us some very much needed hope. The doctors and nurses do not have the time to even come close to imparting the information contained in this book.

Judith Hacks, Ontario, Canada

We have undergone the heartache, stress, hope, and discouragement of our son’s brain injury for nearly six years. Garry Prowe truly understands brain injury. Not only has he lived it, but he has interviewed many others who shared their stories with him.

Dee Strickland Johnson, Phoenix, Arizona

I would have given anything to have a book like Successfully Surviving a Brain Injury when we were stumbling our way through the days, weeks, and months of dealing with my son’s traumatic brain injury. It is so complete and easy to understand.

Joan Dunham, St. Petersburg, Florida

Successfully Surviving a Brain Injury gives hope to survivors by providing answers to questions we either can't get out due to our injury or don't even know to ask. The most important thing I learned is that the survivor is never going to be the person he was before his injury. But that doesn't mean he still can’t be a contributing member of society.

Dave McGuire, 3-year survivor, Vancouver, Canada

Successfully Surviving a Brain Injury deals so well with the emotional issues of living with a brain injury that other books skim over or ignore completely. Even the darkest clouds have a silver lining. But it takes exceptional people like Garry Prowe to help others look beyond the darkness.

Jode Webster, 18-year survivor, Gisborne, New Zealand

Successfully Surviving a Brain Injury

A Family Guidebook

From the Emergency Room to

Selecting a Rehabilitation Facility

Garry Prowe

Foreword by

Susan H. Connors

President & CEO

Brain Injury Association of America

Published by Brain Injury Success Books at Smashwords

Copyright 2011 Garry Prowe

This book is available in print at

http://www.BrainInjurySuccess.org

Smashwords Edition, License Notes

This ebook is licensed for your personal use only. It may not be re-sold or given to others. If you would like to share this book, please purchase an additional copy for each recipient. If you're reading this book and it was not purchased, please return to http://www.smashwords.com and buy your own copy. Thank you for respecting the hard work of this author.

All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form without the prior written consent of the publisher except for brief quotations in articles and reviews. For permission, contact the publisher at Brain Injury Success Books, 7025 NW 52nd Drive, Gainesville, FL 32653.

ISBN: 978-0-9841974-2-2

Note: The contents of this book are, to the best of our knowledge, true, complete, and current. However, certain statements may be outdated or inaccurate. This book is presented as a general starting point for addressing the myriad issues related to a brain injury. It should not replace or conflict with the advice of medical, legal, financial, insurance, and other professionals. The information is offered with no guarantees on the part of the author or Brain Injury Success Books. The author and publisher disclaim all liability in connection with the use of this book.

This book is available at a special discount to organizations that support survivors of a brain injury and their families. For more information, email Info@BrainInjurySuccess.org or call 352-672-6672.

To my sisters Barbara

Barbara Prowe

&

Barbara First

Thank you.

Table of Contents

Foreword

Acknowledgements

1. Introduction

2. How to Use This Book

3. A Momentary Lapse of Attention

4. Brain Injury Basics #1

The Healthy Brain

The Injured Brain

The Healing Brain

5. The Litany of Uncertainty

6. Brain Injury Basics #2

Dealing with Doctors

The Glasgow Coma Scale

What Is a Coma?

The Rancho Los Amigos Scale

Checklist #1 - The First Few Days

7. A Tsunami of Emotions

8. How to Succeed as a Caregiver

Take Care of Yourself

Faith

Ask for Help

The Family and Medical Leave Act

Case Managers

How Well Will My Survivor Recover?

Checklist #2 - Focus on What You Can Control

9. Waiting, Watching, Hoping

10. Paying the Bills

Health Insurance

Disability Pay

Disability Pay & Health Insurance for Children

Do We Need an Attorney?

Checklist #3 - Paying the Bills

11. Trapped in the Fog

12. Life with a Brain Injury

Physical Impairments

Cognitive Impairments

Communication Impairments

Emotional Impairments

Behavioral Impairments

Social Impairments

Spasticity

Seizures

The Impact of Brain Injury on the Family

Checklist #4 - Preparing Yourself and Your Family

13. In Limbo

14. An Introduction to Rehabilitation

Post-Traumatic Amnesia

Rehabilitation Basics

Selecting a Rehabilitation Facility

Nursing Homes

Checklist #5 - Planning for Rehabilitation

15. Eleven Years Later

Glossary

List of Essential Resources

State Brain Injury Associations

Foreword

Traumatic brain injury statistics in the United States are staggering: 1.4 million people sustain an injury each year; 50,000 people die. The economic cost is a whopping $60 billion annually. These numbers indicate the scope of the issue, but they don’t tell the real story. The real stories are both heartwarming and heart-wrenching. Once told, they forever change how we view brain injury and the issues that surround it.

Most people don’t understand brain injury. If they are familiar with the term at all, they think of brain injury as an event—often an accident—for which the victim is treated in a hospital and then released home to live his or her life. This is far from the real story.

Many people who sustain brain injuries never go to the hospital; when they eventually seek medical care, the injury is often misdiagnosed. Those who are admitted to the hospital, often with moderate to severe injuries, may be slow to recover or may not recover fully. For some, brain injury is a disease causative or a disease-accelerative, ushering an onslaught of neurologic and neuroendocrine disorders, bowel, bladder and sexual dysfunction, and sometimes psychiatric disease.

Just as every individual is different, every brain injury is different. But every injury affects the entire family. Understanding brain injury is the first step to regaining control over the many challenges brain injury presents. Understanding brain injury is also crucial to becoming an effective caregiver and advocate. This book offers useful insights into the challenges families face along with helpful advice. The Brain Injury Association of America is grateful to people like Garry and Jessica, who have faced this life-changing event and are willing to share their experience with others.

Founded in 1980, the Brain Injury Association of America (BIAA) is the voice of brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury through advocacy, education, and research. With a nationwide network of more than forty chartered state affiliates, as well as hundreds of local chapters and support groups across the country, the Brain Injury Association of America provides help, hope, and healing for individuals who live with brain injury, their families, and the professionals who serve them. To learn more about brain injury, please visit our Web site at http://www.biausa.org or call our National Brain Injury Information Center at 800-444-6443.

Susan H. Connors, President/CEO

Brain Injury Association of America

September 2009

Acknowledgements

To Joanne Lozar Glenn, thank you for giving me invaluable advice and the confidence to write this book.

To Susan H. Connors, Harvey Jacobs PhD, Marilyn Lash, Bob Cluett, Jeffrey Kreutzer PhD, Suzanne Minnich, Dorothy Worrell, June O’Donal, Deborah Delgado, John Kumpf, Howard Barkin PhD, Scott LaPoint, Kenneth Kolpan, and Lawrence Lottenberg MD, for supporting my work just when I needed a boost.

Thank you to the 300 members of my panel of survivors, caregivers, and professionals. Without your participation, this project would not exist.

While I hesitate to name names due to the certainty of my overlooking someone on the panel who worked especially hard to support this project, I’ll do it anyway. The folks listed below deserve a special note of gratitude. To those particularly diligent panel members who I have unconscionably omitted, I ask for your forgiveness.

The survivors on the panel who were exceptionally helpful include Anne Forrest, Alison Schiebelhut, John Onorato, Ann Boriskie, Ann Carter, Barbara de Catanzano, Jenny Ayers, Bernie Goggins, Bettina Rose Hughes, Deborah Palmer, Bruce Traub, Sandy Archer, Celeste Palmer, Candy Gustafson, Dave McGuire, Christy Marcondes, Melissa Baker, David Moore, Diane Quimby, Tracy Tarvers, Paul Harpin, Iadora Kelley, Jack Sisson, Jason Ferguson, Joseph Dilullo, Jamie Crawford, Jode Webster, Jessica Baldwin, Jennifer Hannah, Jim Eastman, Julia Pratt, Jan Zbynski, Kathy Hay, Kim Winter, Elizabeth Merkley, Louise Matthewson, Thomas Kelley, Marilou Fallis, Les Paul Morgan, Dick Ohmart, Laurie Deptula, Nadia Nadiak, Georgia Pritchard, Pam Hayes, Alicia Payne, Jennifer Pilon, Rebekah Vandergriff, David Dermer, Richard De Pol, Shane Becker, Ryan Holland, Sarah Rose Stewart, Janet Blair, Vicki Cote, and Vycki Fleming.

The caregivers who contributed the most include Carole Thorpe, Bonnie Slager, Christine Ritchie, Tracy Porter, Denise Bryant, Dodie Sullivan, Frances Bloch, Gail Groninger, Helen Cloud, Jan Verrinder, Kathie Sell, Donna Lewis, Cindy Reed, Chuck McClafferty, Monika Ellis, Pat Moss, Martha Burnham, Susan Hansen, Sharon Huey, Tracey Clothier, Chris Wales, Dee Strickland Johnson, Olga Sowchuk, Connie Koebke, Deanna Kritch, Debra Gordon, Dorothy Mathers, Judith Hacks, Sue Stauffer, Joan Dunham, Kathie Stroehlein, Tanya Ison, Anne Zusselman, and Marguerite McKinney.

While these panel members have been a tremendous help, answering my many questions and reviewing early drafts of this book, I alone am responsible for any errors.

Many thanks to family and friends who reviewed and commented upon the manuscript, especially Barbara Prowe, Don Helin, Elliot Yasmer, and Kathy Stevens.

Thank you, Jennifer Prowe for the cover artwork and for your enthusiastic support from beginning to end.

My gratitude to my copy editor Starlyn First, who rescued me from some embarrassing punctuation, grammar, and typos.

Finally, thank you Jessica, for showing me every day how to live successfully with adversity.

Chapter 1

Introduction

You are reading this book because someone you love has suffered a brain injury. The form, extent, and consequences of the damage are yet unknown. Her doctors are unable to make a prognosis. Every brain injury is unique and unpredictable, they say. It will be months before we know for sure. A hospital social worker has advised you to hope for the best, but prepare for the worst.

This news is incomprehensible. What does the social worker mean by the worst? What must you do to be prepared? When will your spouse emerge from her coma? How badly will she be impaired by her brain injury? How soon will her doctors speak with some certainty? How will this misfortune impact your family and your future?

In 1997, I was in your place. My wife, Jessica, suffered a serious brain injury in an automobile accident. Like you, I was relieved to hear that she would survive her near-death experience. Like you, I was devastated to learn that she would acquire any number of lifelong impairments. And, like you, I had many questions and few answers. Only time will tell, her doctors repeated over and over. Confusion, panic, grief, and fatigue were my constant companions every hour of every day for weeks.

I longed for some cause to be hopeful. I had to believe that survivors of traumas like Jessica’s recover well. I craved examples of people with serious brain injuries living full and happy lives.

You should be comforted to know that people do recover successfully from a brain injury, and neither a miracle nor a superhuman effort is required. Jessica and countless others are living proof of this. Despite her considerable disabilities, my wife has created a new life that is full of love and joy, challenges and rewards, family and friends.

To Succeed, You Must Change Your Mind

First and foremost, you must understand that a successful recovery from a serious brain injury is not a full recovery. All but a handful of charmed survivors