Okun The Dystonia Patient Michael S. Okun A Guide to Practical Management The Dystonia Patient The Michael S. Okun The First Practical and Complete Guide to the Integrated Management of the Dystonia Patient “[This book] focuses on treatment, stressing the whole body, not just medications or surgery...Health Dystonia professionals from physicians and surgeons to nurses, physical, occupational and speech therapists will gain insight into how to help those with dystonia.” Stanley Fahn, MD, H. Houston Merritt Professor of Neurology and Director of the Center for Parkinson’s Disease and Other Movement Disorders, Columbia University A Guide to Practical Management “This is a much needed book that, in one place, addresses comprehensively the questions and concerns of patients, families, physicians and other healthcare providers. I recommend it strongly to all of the Patient members of the dystonia care team.” Mahlon DeLong, MD, William P. Timmie Professor of Neurology, Emory University School of Medicine; Scientific Director, Dystonia Medical Research Foundation A Guide to Practical Management The Dystonia Patient: A Guide to Practical Management provides a current understanding of this common but often poorly appreciated condition and a framework for delivering comprehensive multi- and intra-disciplinary care. From medical and surgical strategies and botulinum toxin therapy to the role each member of the professional team plays across the continuum of care, this go-to resource contains everything physicians need to know to direct a successful long-term management program. Key features include: • Promotes and supports a Total Care Concept • Dedicated recommendations for every member of the professional team • Pearls and practical points within each chapter inform treatment and guide the practitioner • State-of-the art information on the use of botulinum toxin and DBS • Lists of resources and referral information for patients, families, and medical teams Michael S. Okun, MD, Co-director of the Movement Disorders Center at the McKnight Brain Institute and Adelaide Lackner Associate Professor of Neurology, University of Florida College of Medicine. ISBN-13: 978-1933864624 90000 386 Park Avenue South, Suite 301 New York, NY 10016 9 781933 864624 www.demosmedpub.com The Dystonia Patient The Dystonia Patient A Guide to Practical Management Michael S. Okun, MD Adelaide Lackner Assistant Professor Co-Director Movement Disorders Center Medical Advisor,Tyler’s Hope for a Dystonia Cure Departments of Neurology, Neurosurgery, and Psychiatry McKnight Brain Institute University of Florida College of Medicine Gainesville, Florida New York Acquisitions Editor: Beth Barry Cover Design: Gary Ragaglia Copyeditor: Diane Lange Compositor: Publication Services, Inc. Printer: Hamilton Printing Company Visit our website at www.demosmedpub.com © 2009 Demos Medical Publishing, LLC. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher. Medicine is an ever-changing science. Research and clinical experience are continually expanding our knowl- edge, in particular our understanding of proper treatment and drug therapy. The authors, editors, and pub- lisher have made every effort to ensure that all information in this book is in accordance with the state of knowledge at the time of production of the book. Nevertheless, the authors, editors, and publisher are not responsible for errors or omissions or for any consequences from application of the information in this book and make no warranty, express or implied, with respect to the contents of the publication. Every reader should examine carefully the package inserts accompanying each drug and should carefully check whether the dosage schedules mentioned therein or the contraindications stated by the manufacturer differ from the statements made in this book. Such examination is particularly important with drugs that are either rarely used or have been newly released on the market. Library of Congress Cataloging-in-Publication Data The dystonia patient : a guide to practical management / [edited by] Michael S. Okun. p. ; cm. Includes bibliographical references and index. ISBN-13: 978-1-933864-62-4 (pbk. : alk. paper) ISBN-10: 1-933864-62-1 (pbk. : alk. paper) 1. Dystonia. I. Okun, Michael S. [DNLM: 1. Dystonia—therapy. 2. Dystonia—psychology. 3. Patient Care—methods. WL 390 D9987 2009] RC935.D8.D975 2009 616.8'3—dc22 2008048001 Special discounts on bulk quantities of Demos Medical Publishing books are available to corporations, professional associations, pharmaceutical companies, health care organizations, and other qualifying groups. For details, please contact: Special Sales Department Demos Medical Publishing 386 Park Avenue South, Suite 301 New York, NY 10016 Phone: 800–532–8663 or 212–683–0072 Fax: 212–683–0118 E-mail: [email protected] Made in the United States of America 09 10 11 12 54321 For Tyler and Samantha, and for Tyler’s Hope for a Dystonia Cure While we search for the cure, may we strive to deliver and inspire the most empathetic and comprehensive care possible for all the dystonia sufferers in the world. All royalties from this book will be donated to Tyler’s Hope for a Dystonia Cure 13351 Progress Boulevard Alachua, Florida 32615 Contents Preface ix Contributors xi 1. Medical and Surgical Approaches to Dystonia 1 Takashi Morishita, Hubert H. Fernandez, Kelly D. Foote, Adam P. Burdick, and Michael S. Okun 2. The Treatment of Dystonia with Botulinum Toxins 37 Ramon L. Rodríguez 3. The Role of the Nurse Practitioner and Physician Assistant in the Management of Dystonia 57 Janet Romrell and Pamela Rose Zeilman 4. Dystonia from a Social Work Perspective 71 Gail Greenhut and Gregory McGann 5. Speech and Swallowing Disorders in Dystonia 87 Emily K. Plowman-Prine, John C. Rosenbek, and Harrison N. Jones 6. The Role of Physical Therapy in the Management of Dystonia 117 Keith J. Myers and Barbara Bour 7. The Role of the Occupational Therapist on the Interdisciplinary Team for the Evaluation and Treatment of Dystonia 149 Portia Gardner-Smith 8. The Role of the Psychologist in Dystonia 183 Gila Z. Reckess, Laura B. Zahodne, Eileen B. Fennell, and Dawn Bowers 9. Psychiatric Considerations in the Dystonia Patient 211 Herbert E. Ward 10. Programming Deep Brain Stimulators in Dystonia 227 Pamela Rose Zeilman and Michael S. Okun Index 249 vii Preface Although it is unknown how many people in the world actually suffer from dystonia, the numbers of those diagnosed with the syndrome seem to increase each time the issue is reexamined. When I was in training, my mentors used to say Parkinson’s disease is ten times more common than dystonia. Each year that has passed, however, there has been a reduction in this ratio among the experts, with some even quoting 3–4:1. Although many people have never heard of dystonia, it is common. As a practicing movement disorders expert, it has always been troubling to me that as we identify more dystonia cases, we have as a field offered little guidance for the best multidisciplinary and inter- disciplinary techniques, and we have not established the best care paradigms for these patients. Challenged by Rick Staab, the CEO and founder of Tyler’s Hope for a Dystonia Cure and a dystonia dad, we have responded by writing The Dystonia Patient: A Guide to Practical Management. The book is designed to be comprehensive and includes chapters covering the multidisciplinary and interdisciplinary treatment of the dystonia patient. Each chapter is accompanied by practical pearls that physicians and healthcare providers should keep in mind when attempting to provide the best possible comprehensive care for patients. The book also features lists of resources and websites for patients, families, and medical teams. The content spans children to adults, as well as medical/behavioral and surgical approaches to the dysto- nia patient. Our underlying motive in writing the book was to drive the con- struction of multidisciplinary and interdisciplinary care teams and to address the need for best care in dystonia patients. We also hope that as care teams form, they will enhance the treatment of the dystonia family. The chapters are divided into main topic areas that address the compre- hensive care for the dystonia patient. Morishita and colleagues review the med- ical as well as surgical approaches to dystonia treatment. Dr. Rodriguez follows this chapter by reviewing botulinum toxin therapy for dystonia. Romrell, Greenhut, and colleagues then explore the uses of nurse practitioners/physician ix x|Preface assistants as well as social workers for the dystonia interdisciplinary team. Speech and swallowing as well as physical and occupational therapy are then addressed by Plowman-Prine, Myers, and Gardner-Smith in what includes a comprehensive review of current approaches to these common problem areas. Reckess, Ward, and colleagues then discuss the role of psychology and psychi- atry in the treatment of the dystonia patient. Finally, Zeilman reviews the com- plex topic of deep brain stimulation programming in dystonia. We hope that by providing this resource we can in some small way catalyze the formation of multidisciplinary and interdisciplinary teams for the care of the dystonia patient. This book, written by the dystonia team at the University of Florida Movement Disorders