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Marapr 2004 F A SALUTE TO Mark Your Calendars: The National Walk for Epilepsy TONY COELHO March 29, 2008, in Washington, D.C. The Magazine of the Epilepsy Foundation epilepsyepilepsyUSAUSANOVEMBER/DECEMBER 2007 Caring for the Caregiver: YOU The ADA Restoration Act: Make Your Voice Heard www.epilepsyfoundation.org A SALUTE TO Mark Your Calendars: The National Walk for Epilepsy TONY COELHO March 29, 2008, in Washington, D.C. The Magazine of the Epilepsy Foundation epilepsyepilepsyUSAUSANOVEMBER/DECEMBER 2007 Caring for the Caregiver: YOU The ADA Restoration Act: Make Your Voice Heard / www.epilepsyfoundation.org Compliments of epilepsyUSA Vol. 40, No. 6 Published six times a year by the Epilepsy Foundation of America® 8301 Professional Place Landover, MD 20785-2238 (301) 459-3700 message from the chair www.epilepsyfoundation.org CHAIR Steven T. Sabatini, CPA IMMEDIATE PAST CHAIR In this season of giving, I wanted to acknowledge an often Tony Coelho overlooked but absolutely critical member of any health care SENIOR VICE CHAIR team—the caregiver for a person with a chronic disorder, like Joyce A. Bender epilepsy. As a caregiver, you might feel like you are alone—the TREASURER only person out there who experiences the stress, frustration, Mark E. Nini but also the tremendous rewards that come from helping SECRETARY someone to overcome the daily hurdles that are part of having a Denise L. Pease health disorder. However, you are not alone. It is estimated that CHAIR, PROFESSIONAL ADVISORY BOARD 50 million Americans provide help for their loved ones with Bruce P. Hermann, Ph.D. special needs. CHAIR, PAB, QUALITY OF LIFE For those of you who give so much all year long, it is Te s s S e irzant, R.N., M.S. important to remember to take care of yourself, too. Inside this PRESIDENT AND CHIEF EXECUTIVE OFFICER issue, you will find advice on how to cope with some of the Eric R. Hargis natural feelings that come with being a caregiver, as well as tips on how to stay healthy while balancing so many responsibilities. When you give so much, it’s VICE PRESIDENT, COMMUNICATIONS John Schneider sometimes hard to remember to give back to yourself—to take a break, relax and refuel. SENIOR DIRECTOR, WEB AND PRINT PUBLISHING In this issue, we also salute our longtime colleague and friend, the immediate Kenneth Lowenberg past chair of the Epilepsy Foundation’s board of directors, Tony Coelho. Tony’s EDITOR tireless efforts on behalf of all people with disabilities—including people with Lisa Boylan epilepsy—are remarkable. His unflagging energy and commitment to ending SENIOR ART DIRECTOR stigma for people with epilepsy and leveling the playing field for all people with Sara DeMart, The Oz Group disabilities is the cornerstone of an outstanding career in politics and the private sector. Tony’s story of overcoming the hurdles he faced as a young man with EpilepsyUSA reports on new developments epilepsy—ultimately becoming one of the most powerful men in the House of in a wide range of fields of interest to people with epilepsy and to those who Representatives—is truly inspiring. provide services to them. Articles involving At the close of the year, I would like to take the opportunity to express my medical aspects of epilepsy are not gratitude to all the people who support the Epilepsy Foundation. It is through intended to be medical advice, and readers are cautioned not to make any your goodwill that we are able to achieve our goals as we work toward making life changes in treatment based on such better for people with epilepsy—and their caregivers. information without consulting a physician. Signed articles, quoted statements, and letters to the editor represent the views of the authors and do not necessarily reflect the positions or policies of the Epilepsy Foundation. Steve Sabatini Subscription rate – $15 per year. © 2007 Epilepsy Foundation of America IN EVERY ISSUE CONTENTS In My Own Words 3 In Brief 4 November/December 2007 Letter to the Editor 21 Marketplace 22 Chuck Sparks with his children, Allison, Chandler, Shelby ON THE COVER and wife Lauren. Shelby, 7, has epilepsy. 5 Caring for the Caregiver: You Caring for yourself is one of the most overlooked elements of being a caregiver. Find out how to make time for yourself. 7 A Signature Struggle BY JOE LaMOUNTAIN Laurie Kelly of Lynchburg, Va., needed her congressman’s support for the Americans with Disabilities Restoration Act, but he wasn’t buying. She decided to craft a petition to change his mind. 3 9 A Salute to Tony Coelho Former congressman and immediate past chair of the Epilepsy Foundation’s Board of Directors, Tony Coelho, blazed an often difficult trail to become a political leader and champion of people with 7 disabilities. COVER PHOTO CREDIT: DIGITAL VISION/ALLISON MICHAEL ORENSTEIN 13 / Photos from the Epilepsy Foundation’s Distinguished Achievement Awards Gala, honoring Coelho. 20 / Book Review BY THERESE SZYMANSKI Electricity, by Ray Robinson, is a deep, complex and thoughtful literary work about epilepsy. www.epilepsyfoundation.org PHOTO CREDITS: CHUCK SPARKS, iSTOCKPHOTO/SEAN LOCKE, TONY COELHO PHOTO CREDITS: CHUCK SPARKS, 9 1-888-886-EPILEPSY A DAD’S PERSPECTIVE Chuck Sparks lives in slow side of normal until she was 18 months old, at which Grapevine, Texas with time we saw an abrupt halt in progress. In all the years his wife Lauren and their since, she has only gained about four months’ worth of three children, Allison, intellectual, social and physical development. At 7 years Chandler and Shelby. old, Shelby operates like a child not quite 2. She speaks He is a club manager in one-word utterances, can’t run and needs help feeding at Sam's Club. herself. She has grown so big that changing her diaper has become one of the biggest challenges of all. We spend our time running from doctors to therapists and meetings at school. Sometimes, I mourn the fact that my daughter will probably never live independently. And today, I mourn the stacks of medical bills waiting to be paid, and yet... BY CHUCK SPARKS Shelby is a wonderful gift from God. I have watched her bring out the best in those around her as children— ife is full of surprises normally so self-centered—learn sensitivity and how to and having a child nurture someone who is different. Shelby’s special gift is L born with a disorder love. She brightens the day of many strangers as she asks I knew nothing about was a for hugs wherever we go. We call her our world-champion big one. It’s funny how you cuddler. She loves to sit in my lap and snuggle. Shelby can become an expert on has prompted the involvement of our entire family with something when you need to be. And I needed to be. My the Epilepsy Foundation. My wife, mother and mother-in- daughter Shelby began having generalized tonic clonic law wrote a book about Shelby that introduces young seizures over seven years ago. She wasn’t even 5 months children to seizure disorders. I serve on my local board old. My wife and I were petrified. How things have and raise money to increase epilepsy awareness and changed. Her “events” improve the lives of those have changed in type, who suffer with the frequency and duration The bottom line is, if Shelby never disorder. many times. They seem At times, I find so commonplace now. gets any better, my life is so much richer myself focusing on my Shelby’s seizures are a “ daughter as a cause— because she's in it. I know a lot of others part of everyday life. something to be fixed. A day WITHOUT a who would say the same thing. But it would be a seizure is now a big event. tragedy to keep thinking It’s a helpless feeling to that way and miss the blessings watch my child suffer. The helplessness multiplies as we of today. I pray for Shelby” to be healed and I wish she try endless pharmaceutical combinations and treatments were developmentally appropriate. But the bottom line is, hoping that the next one will bring control. To date, if Shelby never gets any better, my life is so much richer control has eluded us. Because of this, we can’t hire a because she’s in it. I know a lot of others who would say teenager to baby sit. We have to rely on trusted adults to the same thing. volunteer and we cherish our precious time out. Shelby has severe developmental delays. She developed on the IN MY OWN WORDS is a column featuring the voices of people affected by epilepsy. 3 EpilepsyUSA NOVEMBER/DECEMBER 2007 www.epilepsyfoundation.org ›› IN BRIEF were able to mask the effects of one another in the brain produc- Inheriting Two Genes for ing a mouse that was less epileptic. Epilepsy Might Reduce Your EpilepsyUSA: How could these findings help in new ways of treating epilepsy? Risk for Seizures Dr. Glasscock: It has implications for drug treatment and genetic According to new research, inheriting two genes for diagnosis. For people who suffer epilepsy due to potassium epilepsy might make you less likely to have a seizure. channel gene mutations, it suggests that blocking certain calcium Researchers from Baylor College of Medicine found that channels might be useful for them. Conversely, a drug that blocks genetic mutations that can individually cause epilepsy potassium channels might be useful for people with epilepsy due together might actually make you less likely to have a to calcium channel mutations. Our findings also show that just seizure.
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