Epilepsy News Serving the people of Newfoundland and Labrador for over 25 years! The Quarterly Newsletter of Epilepsy Newfoundland and Labrador Spring-Summer 2011 Share Your Voice! ou have the opportunity to change things. Right now. The information collected, will be like no other in this country, and will give us all the opportunity to see just how Epilepsy is truly YSometimes it can seem so difficult to make a difference. affecting the lives of Canadians. It will allow organizations and One voice, one opinion. How much impact can it really make? agencies to work better in meeting the needs of the clients we serve, and help identify gaps where more focus might be needed. More than you might ever imagine. It can change things for the good. But we need your help. The Canadian adults living with epilepsy are being invited to participate survey will be available August 15th, 2011. There will be a number in a Canada-wide survey: of different ways to access it. • Visit the Epilepsy NL website at www.epilepsynl.com and The Impact of Epilepsy click the survey link on the front page. on Canadians • ‘Like’ our Facebook page, and click the survey link in our newsfeed. This short questionnaire explores how epilepsy impacts quality of • Click the Survey link on the Canadian Epilepsy Alliance life, health, and access to care and treatments. website at www.epilepsymatters.com. Conducted by Leger Marketing, the survey adheres to market Please complete the survey by September 19th, 2011, and make research codes of conduct, which guarantees confidentiality and your voice heard. anonymity. With Our Sincerest Thanks here are many businesses, organizations, and individuals • Heather and Rachel Spicer for motivating their schools who made Epilepsy Awareness Month and Purple Day 2011 and arranging some awesome Purple Day awareness. Tone of the best ever in Newfoundland and Labrador. Their dedication went above and beyond, and made our purple much • Marybeth and Patti Thistle, Wendy Sheppard and more purpley than it ever could have been without them. Faith Adkins for being super Purple Day Ambassadors In addition to all the groups and supporters listed on page 3 of this • Dr. Ogunyemi and Dr. Buckley for the donation of their newsletter, we want to thank: time, and the Ramada St. John’s for their donation of event space for our ‘Ask The Doctors’ Forum • UCB Pharma - who provided funding of $10,000 for information and resources, enabling us to spread • and to every person in this province who wore their awareness and understanding farther than ever before. purple proudly on Purple Day 2011, THANK YOU! • ProActive Physiotherapy and Scotiabank Centennial Square for their special Purple Day Events Page 1 Epilepsy News Spring-Summer 2011 On My Mind Epilepsy News is printed quarterly by: Epilepsy Newfoundland & Labrador 26 O’Leary Avenue St. John’s, NL A1B 2C7 Telephone: (709) 722-0502 Toll Free: 1-866-EPILEPSY "We are less when we don't include everyone." Fax: (709) 722-0999 ~ Stuart Milk Email: [email protected] Website: www.epilepsynl.com I’ve been hearing a lot these days about inclusion, and how we can all work together to make not just our schools, but our entire communities more accepting and Editor: Pamela Anstey accommodating to all. Everyone has a perspective to share, regardless of varied abilities, gender, financial BOARD OF DIRECTORS status, or the clothes we wear. President: Over the years, I have worked with clients who have been kicked out of daycares, fired Ron Stone (Mt. Pearl) from jobs, discriminated against, excluded and isolated sim ply because of their seizures. I hear it all too often. Vice-President: Ross Hewlett (Springdale) “It’s too much work, to make accommodations, or train people,” is the typical excuse. Secretary: “It would be too disruptive and costly!” Anne Marie Hagan (St. John's) But excuses like that don’t fly with me. Costs involved can be offset by several funding Treasurer: assistance programs, and as for the work involved, the reward from allowing a person Patti Thistle (Paradise) to develop and participate to their full potential, instead of being shuffled off to the sidelines of life... well, that’s worth a little work, isn’t it? At Large: Pauline Duffy (Kippens) Rosemary Hannon (Bishop's Falls) Bernie Larkin (Stephenville) Patsy Lush (Corner Brook) Executive Director: Pamela Anstey, Information Officer Gail Dempsey Medical Consultant: Dr. A.O. Ogunyemi, M.D., FRCP (c) Information Officer: Disclaimer Pamela B. Anstey, B.A, I.T.G. The materials contained in the Epilepsy Newfoundland and Labrador newsletter are to provide general information about epilepsy to the public. The information presented is not intended as medical or legal advice. Epilepsy Newfoundland and Labrador, its employees, board members, medical advisors, volunteers, agents and sponsors do not assume responsibility for inaccuracies or omissions or for the consequences from the use of the information obtained in this newsletter. Epilepsy Newfoundland and Labrador is not liable for any outcome or damages resulting from information in either a direct or indirect form. We recognize that each individual's experience of epilepsy is different. Consult your physician and/or neurologist with any questions you have. People with epilepsy should never discontinue anti-epileptic medications or make changes in activities unless specifically advised to do so by an attending physician. Page 2 Epilepsy News Spring-Summer 2011 Epilepsy Month 2011 Painted the Province Purple! ith so much support and participation this year, we didn’t The Purple Day Bunny Hop just have a Purple DAY, we wound up with enough events Wto fill a Purple Month! To show just how much even little kids can do, daycares across the province were invited to participate in the third annual Purple W ith events happening all through March, this year was an Day Bunny Hop. W e want to send out a great big shout of thanks Epilepsy Awareness Month that inspired and motivated. Never to the following centres. Please know that you really do make a before have we seen the amount of participation, energy, and difference. enthusiasm in support of all those who live with seizures. W hat • Mes Amis Daycare, Mount Pearl follows is a recap of some of the events and activities that • Creative Learning, Grand Falls - W indsor happened right here in Newfoundland and Labrador. • On Your Mark, St. John's • Confederation Building Daycare, St. John's Ask The Doctors • Krista's Kid Care, St. John's • Humpty Dumpty Daycare, Corner Brook The “Ask The Doctors” Question and Answer Forum was held on • Frances' Little Friends, Portugal Cove - St. Phillip's March 24th, with the Ramada generously donating event space. • Creative Beginnings, Corner Brook The 36 participants had the opportunity to learn from Dr. Abayomi Ogunyemi, and Dr. David Buckley, two of the provinces foremost neurologists, who both give of their time freely to attend. Positively Purple Schools Dr. Ogunyemi spoke briefly on the interaction between cancer and A brand new tradition this year, just for the K-12 schools of the epilepsy, and of treating women with epilepsy. Dr. Buckley then province. W e challenged schools to come up with creative ways spoke on the topics of medications, epilepsy surgery, the to support Purple Day and seizure awareness. And did they ever! Ketogenic or Modified Atkins diet, and the Vagal Nerve Stimulator. Some schools asked everyone to wear something purple that day, some schools held information sessions, some schools had fun After, many questions were taken from the floor. Including: events like Purple Pyjama Parties, and Pizza Parties. W hatever • genetics and the role they play in epilepsy the activity, every school became a part of something very special • the long term effects of powerful epilepsy medication in helping people truly understand what epilepsy is all about. The • weaning off medication in adulthood - benefits vs. risks Positively Purple Schools for 2011 are: • balancing quality of life with seizure control • Stephenville Middle School, Stephenville • the impact of vitamins and supplements on seizures • H.L. Strong Academy, Little Bay Islands • Elwood Elementary, Deer Lake Painting the Courts Purple • Avoca Collegiate, Badger • Elizabeth Park Elementary, Paradise All the Provincial Courts and one Supreme Court across the • St. Bernard's Elementary, W itless Bay province challenged each other to come up with the most creative • Pasadena Academy, Pasadena ways of celebrating Purple Day again this year. This included • Pasadena Elementary, Pasadena dressing in purple, information displays, purple food and • Glovertown Academy, Glovertown cupcakes, a donation collection, and a bake sale. W e are • Carbonear Collegiate, Carbonear tremendously grateful for the continuing support of the Provincial • Mount Pearl Intermediate, Mount Pearl and Supreme Courts! Graphic Designs for Epilepsy Proclamations Galore! Each year, we challenge the students in the Graphic Design Communities all over the province stood proudly and showed their program at the College of the North Atlantic to develop a bus purple during March. Several towns and cities either proclaimed shelter ad that would make people stop, if even for a moment, and March 26th as Purple Day for Epilepsy, or participated in some think about some of the challenges of epilepsy. T h e t w o sort of event to commemorate the day. They include: winners for 2011: Trevor de Verteuil and Nicole Rogers. The ads, • City of St. John's shown on page 9 of this newsletter, are now on display at two very • City of Corner Brook prominent bus shelters here in the city. • Town of Gander • Town of Portugal Cove-St. Phillip's Metrobus has been a great supporter of this project over the years, • Town of Kippens and have helped facilitate our messages throughout the city, for which we are very grateful.