Epilepsy: Insights & Strategies Issue 1, March 2009 A publication of the In this Issue: Preface from the Editor-in-Chief, Robert S. Fisher, M.D., Ph.D. International Travel with Epilepsy by Jeanette B. Herting Video-EEG Monitoring: In Preparation for Possible Epilepsy Surgery by Stuart Ross McCallum Choosing Epilepsy Surgery: Undergoing a Temporal Lobectomy by Ann Carletta The Moment of Empowerment: Thoughts from a Parent by Elizabeth Aquino The Americans with Disabilities Act Amendments Act: Good News for Employees with Epilepsy by Jason M. Johnson, Esq. [Sidebar: Balance at Work by Linda McGuirk] Gain Control Over Your Seizures: Strategies for Coping by Susan Brown [Sidebar: Lessons Continued by Sandra Cushman-Weinstein] How Patients and Health-Care Providers Can Improve the Epilepsy Clinic Visit Experience by Randy Perkins, MPAS, PA-C, FNP Epilepsy Journal: Insights & Strategies EDITORIAL BOARD EDITOR-IN-CHIEF Robert S. Fisher, M.D., Ph.D. BOARD MEMBERS Jason M. Johnson, Esq. Deerfield, Illinois Ronda M. Royal, Ph.D. Research Psychologist Portland, Oregon Carol McAlice Currie Statesman Journal Newspaper Columnist Salem, Oregon Brittany McCarthy Robersonville, North Carolina Elizabeth Aquino Parent and Writer Founder, PACE (People Against Childhood Epilepsy) www.paceusa.org Los Angeles, California Danielle M. Rocheford Soon-to-be author of “Mommy, I Feel Funny! A Child’s Experience with Epilepsy” Westminster, MA PUBLISHED BY Epilepsy Therapy Project PO Box 742 Middleburg, VA 20118 (540) 687-8077 MANAGING EDITOR Robin Owen Sandra Cushner-Weinstein, PT, LCSW-C Director of Services and Camps, Department of Neurology at Children’s National Medical Center Washington, DC Stuart Ross McCallum Author and Freelance Journalist, Author of “Beyond My Control, One Man’s Struggle with Epilepsy, Seizure Surgery & Beyond” Melbourne, Victoria, Australia Michael J. Roszkowski, PhD Director, Institutional Research, La Salle University Cherry Hill, New Jersey Barbara Sizemore Brossard CRC LMHC NCC Executive Director, Epilepsy Association of WNY, Inc. Buffalo, New York STAFF Chairman Warren Lammert President Joyce Cramer Executive Director Kim Macher Designed by Robin Owen and Karen Dredske COPYRIGHT NOTICE Copyright © 2009 by Epilepsy Therapy Project. Permission to make digital or hard copies of part or all of this work is not allowed without permission from the publisher. For permission, contact info@epilepsytherapyproject.org MISSION Epilepsy Therapy Project is a non-profit organization whose mission is to advance new treatments for people living with epilepsy. ETP helps scientists develop new drugs and brain stimulators to treat epilepsy. The goal is to fast-track great ideas into treatments to reach people as fast as possible. Your donations go directly toward development of new treatments as well as to maintain epilepsy.com. 2 Epilepsy: Insights & Strategies March 2009 PREFACE TO THE FIRST EDITION OF EPILEPSY: INSIGHTS & STRATEGIES Robert S. Fisher, M.D., Ph.D., Editor-in-Chief, epilepsy.com Advice should come from she or he who knows the most. For advice on how to live best with epilepsy, this person usually is not a doctor, but one who has lived with the condition. Peer-to-peer networks are everywhere on the Internet (including some great ones on epilepsy.com), and they can provide critically useful information and advice. But some Internet contributions to a forum or a blog are inaccurate or difficult to understand. Epilepsy.com is launching a new project: a journal written, not by doctors, nurses or researchers, but by people with epilepsy and their families. The journal is called “Epilepsy: Insights & Strategies.” Its goal is to ease the burden of fear and ignorance about epilepsy, especially for those who have it. In the journal pages, people who have found a way to face the many challenges of epilepsy share their insights and their strategies. The stories may describe personal details, but the articles are not designed to be case studies or medical histories. Rather, they comprise information and advice based upon personal experience. Unlike most interchanges on the Internet, the journal articles are written and rewritten for maximum clarity, with rewriting done by the Editorial Board and the Managing Editor, Robin Owen, a professional writer/editor. I have reviewed every article for medical accuracy, and I therefore will assume responsibility for any medical inaccuracies—inevitably there will be some. For several of the articles, I provided explanations and amplifications, but never corrections. I added these remarks as “Editor’s Notes,” in order to preserve the integrity of the writing by the non-medical contributors. Additional input to each article, and a recommendation about suitability for publication, came from our talented editorial board, whose names are listed at the front of the journal. Each article has a place at the end to initiate a discussion thread about the subject of the article. I hope many of you will use it to communicate, not just with the author, but with each other. This journal is something new. Please read it, think about the messages of the articles, comment in the comment space after each article, and think about whether you have an insight or strategy to share. If you do, contact Robin Owen at robin@epilepsytherapyproject.org. This is now your journal—by you and for you. March 2009 Epilepsy: Insights & Strategies 3