Contact202-1640 Oak Bay AvenueVictoria, BC V8R 1B2Phone: 250-475-6677Fax: 250-475-6619Email: help@vepc.bc.cawww.headwayvictoria.com

Inside...

Vol.44, Winter, 2018

Epilepsy Coordinator’s Message 2

Articles 3-5

Feature Story 6-7

Programs & Workshop 8-9

Community Corner 10

Executive Director’s Message 11

Page 2 The Brain Wave, Volume 44, Winter 2018

A Message from our CoordinatorHow are the topics of social experiences, stigma and epilepsy awareness related? These are often major concerns for people with epilepsy and they all weave together. Awareness about life with epilepsy is so important for our whole community. In our diverse world, people are recovering from and living with problems. Whether they are psychological, physical or social problems, they are nevertheless experienced at some time by all of us. When one person speaks out to raise awareness, this person is modeling courage and helping people to understand differences among us. When we understand, we are more relaxed about these differences. Epilepsy continues to carry stigma in many circles of our society because people do not understand it. The article on page 3 explains some of the types of stigma and the implications on social experiences. March 26 is International Purple Day in support of people living with epilepsy. This awareness campaign is

so important to us, we celebrate Purple Month! If there is one goal for Purple Month, it is to combat stigma and create a safe and comfortable community for people with epilepsy. Find out more about our awareness campaign on the back page.

In October I went to the Canadian League Against Epilepsy’s Scientific Meeting. I learned that there is concern for children with epilepsy in terms of social skills acquisition. Dr. Elizabeth Kerr explained that measures of social and communication skills are below average to severe when there are problems with sustained attention and working memory and especially so when there is a psychological co-morbidity. In another talk, Dr. Mary Lou Smith spoke about social problems among children with epilepsy and outcomes of surgery. Of course the outcomes were best when patients were seizure free. Dr. Smith identified social problems as stemming from communication deficits and isolation, which hinders independence, self-esteem and opportunities to gain skills. Her pediatric patients expressed a profound sense of social isolation with two main sources: internal constraints, e.g. low self-esteem and feeling different; and external constraints, e.g. being excessively monitored and having to avoid triggers or risks. I recognize these constraints for HeadWay members of all ages. As seizures become better controlled, social competence improves and problems decrease. Dr. Smith’s post surgery patients reported improved confidence and autonomy resulting in more opportunities for social interaction. Even though the youth were more confident and autonomous they said the quality of their social experiences did not improve. Building truly safe, nourishing relationships requires skills and time.

The fact that social health was mentioned in many of the talks over the weekend emphasizes the importance for our overall health. We do not easily come together in diverse groups. We tend to look for others who we deem to be similar. If the perception is already that “I am different”, an environment that is especially warm and welcoming, where differences are seen as gifts is going to be most important. The Inclusive Leadership course described on page 9 focuses on building bridges within and between diverse groups – which is how I would describe our epilepsy membership – diverse! Let’s change the world by starting with our agency, raising awareness, fighting stigma, members welcoming other members… and so on!

Lindsay Beal

The Brain Wave, Volume 44, Winter 2018 Page 3

ArticleFight Stigma with Social Support and Awareness Campaigns

by Lindsay Beal

Epilepsy stigma is a complicated phenomenon, with many dimensions and many challenges. In the U.S., people with epilepsy say that stigma is “among the worst things about the disorder” 1. It is not likely that colleagues, employers and friends intend to stigmatize a person with epilepsy. It is usually something that happens without being fully aware of it. To be stigmatized is like having a tarnished or discredited reputation. One can be stigmatized in an instant, and the implications can endure for years. It is important to understand stigma, to recognize it’s far reaching effects because this understanding will foster clear communication about epilepsy, and its far reaching effects. Combating stigma is most effective when each challenge, with its root cause, is addressed openly and compassionately.

“Enacted stigma” is evidenced by “social distancing, institutional practices, or discrimination” 1. “Perceived stigma” or “felt stigma” occurs when people come to believe they are different than “normal” people and there is an internal devaluation of self. “Courtesy stigma” refers to negative beliefs about people who ally or associate with a person who is stigmatized. Each of these types of stigma leads to problems that impact health. Often concealment is a strategy used by people with epilepsy or family members, to reduce the likelihood of enacted stigma. Some risks of concealment include limited access to resources and the psychological stress of keeping the condition hidden.

A big challenge that occurs with epilepsy stigma is social distancing. Seizures can disrupt routine, communication and relationships, which can result in social distancing. While there are many disadvantages that can spin off from social distancing most people will experience a loss in self-esteem. Another challenge with epilepsy stigma is the perception that seizures pose a threat, or that one will be obligated to provide assistance that he or she is not confident in providing. Knowing these challenges means we can address them head-on.

Strategies for combating stigma are 1) social support and 2) raising awareness. Strategies are best when directed toward a specific demographic, for example, adolescents, teachers, nurses, parents, children, employers, etc. Also awareness and support can be aimed to specific social circles. It is important that each person with epilepsy has relationships with people who are informed and supportive, so that social situations feel comfortable. In this way, we build resilience and at the same time reduce the occurrence of epilepsy stigma.

1. Kobau, Rosemarie, et al. “Chapter 3.” Epilepsy and the Interictal State: Co-Morbidities and Quality of Life, John Wiley & Sons, Inc., 2015, pp. 15–25.

Page 4 The Brain Wave, Volume 44, Winter 2018

Article

Inclusive Leadership ~ a vision and a testimonial Excerpt from: A Stone Soup/Stone Curry Story by Harriet Greenwood, Linda Hill, Rod Keays, Nola Landucci and Linda McDaniels

Inclusive Leadership is desperately needed in a world that is not a level playing field; a world that disconnects people from each other and from nature; a world that tells people to park our personal lives at the door and get back to work. In these precarious times, in our precarious lives, none of us know how much we have to give or how long any of it will last.

Inclusive Leadership is a practice that recognizes the importance of self-care and family care. Self-care involves clarifying our boundaries, knowing our limits and defining our commitments in terms of what we can no longer do, what we can continue to do, and what new things we can take on. Family care involves caring in ways that work for the people we love. Our loved ones who are aging or who live with mental illness and other chronic health conditions experience so much exclusion within mainstream society, that everyone in the family can become invisible. Inclusive Leadership in families involves learning how to help things get better by balancing support with letting go and by practicing the art of inter-dependence.

We want to bring Inclusive Leadership practices into the groups and organizations we work and volunteer with. We try to leave each Inclusive Leadership event with more skills for meeting people where they are, with understanding of their perspectives. We are learning to go into situations that might be problematic, with non-combative ways. By becoming inclusive role-models, we are learning to be courageous. The more we can each integrate Inclusive Leadership skills into our daily lives, the more connected and supported we will feel, and the more resilient we will be.

The Brain Wave, Volume 44, Winter 2018 Page 5

ArticleLearning at an Inclusive Leadership Gathering by Shannon Oatway and Nicole Crescenzi

Approximately 0.6% of the population in Canada has epilepsy. It’s non-discriminatory, affecting people in all demographics. The obvious issues that epilepsy can create such as seizures, spasms and injuries as a result of a seizure are well documented. Yet there is a silent, hidden symptom that can have a very negative impact on the quality of life and the emotional well-being for some individuals with epilepsy. And that is the struggle with a lack of self-esteem which can lead to isolation and depression. It is a symptom that is often under treated and misunderstood.

HeadWay and Inclusive Leadership Cooperative have partnered in offering leadership workshops with the intention of promoting confidence and self worth in the participants. Our agency partially sponsored two of our clients, one of whom was Megan Carrigan to attend a three-day Inclusive Leadership Gathering at the Cowichan Education Centre last June. Megan attended practical courses such as anti-discrimination first aid, shared motivational stories and took part in a wide variety of group activities, all intended to build a solid foundation in self awareness and confidence. Megan shared “We did a lot of different things, and learned how to work with other people better. In one of the classes we were outside and sharing things about ourselves and what we’d like to change, and how we think this would help us in our future.” As Megan moves forward, the future looks a little brighter as she takes the lessons learned through her long weekend at the ILC workshop and applies them to her studies at Camosun College and her volunteer opportunities at HeadWay.

Appoximately 5% of people with epilepsy have photosensitive epilepsy and the onset peaks around age 12. Seizure triggers include television viewing, video games, computer screens and natural flickering light, such as sunlight on water. People with pure photosensitive epilepsy should view television from a distance 5 times the diagonal measurement of the screen in a well-lit room. Some people find that eyeglasses with “blue blocker” lenses help reduce seizure frequency. If you would like to trial these eyeglasses, please book an appointment with Lindsay. There is funding available if you decide to purchase a pair.

Page 6 The Brain Wave, Volume 44, Winter 2018

Feature StoryKnowledge is Power Story and photos by Shannon Oatway“Epilepsy does not define me.”Tess Hawkins spent years trying to hide the fact that she has epilepsy, until she realized that she was not only doing herself a disservice but it was also a missed opportunity to educate others about the condition. “Knowledge is Power” is Tess’s message and she found as she included family members, friends, and co-workers into her personal life, they responded with understanding and support. They learned about epilepsy and seizure first aid so they could be of assistance should Tess have a seizure while she was in their company.Her circle widened.

And then there is Merlot. It is hard to ignore this friendly furry companion of Tess’s but ignored she must be. Merlot is Tess’s support dog and her shadow. Service dogs are not your ordinary canines; they have duties to perform for their owners. It is a huge challenge, educating the public on how to interact with a dog guide. No interaction at all, nothing, including talking to the animal as it’s a distraction that could prove to have detrimental consequences.

Having a dog guide was also an issue when Tess was seeking employment after her graduation from University. It was a long and often disheartening process where the prejudice towards individuals with disabilities put them at a disadvantage from the get go because of skewed perceptions from potential employers. As Tess recalled “It took 132 applications and 14 interviews after completing my M.A. to get my first job. I found the private sector to be very discriminatory, often worried about how their clientele would react to my dog guide. My rights became secondary to the clients' - the BC dog guide act doesn't clearly address employment rights.” She felt she was labeled as “disabled” and her ability to succeed in the workplace was called into question regardless of what was on her resumé. “Employers worry about me being a risk, view Merlot as a pet, or assume that because I have a disability I can't do the job as well as someone without a dog guide. Finding a permanent job has

been the hardest challenge I've had to face, and one that doesn't seem to be getting easier for individuals with disabilities” says Tess.

A kiss from Merlot

Tess at work with Merlot

The Brain Wave, Volume 44, Winter 2018 Page 7

Feature StoryEpilepsy has presented some difficulties in Tess’s life but her successes far out-weigh the challenges. Take her 5 year relationship with partner, Scott Clare who is Tess’s biggest advocate. Scott expresses that it’s “important to feature individuals that have been successful in overcoming adversity and share their stories. Tess still faces challenges but it would be great if sharing her story could help others.” Tess leads a full life: a loving, supportive relationship, an interest in art ( she has a masters in Art History), travelling, various hobbies and just hanging out with family in their cozy Gorge apartment. Is her life different? Yes it is, epilepsy has made that a hard fact. As much as Tess tries to lead a “normal” life, our society can create such unnecessary obstacles, out of ignorance and perhaps even fear.

March is Epilepsy Awareness Month and it’s a time to raise awareness about epilepsy and to help to dispel the stigma that surrounds this disorder. Each day in Canada, an average of 42 people learn that they have epilepsy. As Tess explains “The lack of education is a severe problem, and needs to be addressed to create a more caring and understanding community.” And that is the goal of HeadWay, to create an inclusive, caring community. Let’s get the conversation going, let’s be a part of the solution. Ask questions, get educated. And HeadWay can help; we offer in-service presentations about epilepsy and seizure first aid. Call us and let’s get this dialogue started.

Tess, Scott and Merlot share a little quality family time

Page 8 The Brain Wave, Volume 44, Winter 2018

ProgramsSupport GroupsHeadWay has a number of ways for members to connect with each other. There is no substitute for real-time, person to person interactions. Positive social connections bolster health and reduce the effects of stress. Register in advance with Lindsay 250-475-6677 lbeal@vepc.bc.ca for any of the following groups.

Adult’s Peer Support GroupRuns monthly on the second Wednesday, 12:30 p.m. – 2:00 p.m.This is a workshop style support group with activities to empower, investigate, and encourage our own and other’s positive life experiences.Facilitated by Terri Beaton.Terri is a long time member & volunteer of HeadWay. She has facilitated groups with a number of organizations, including University of Victoria, Inclusive Leadership Cooperative, and Whitecrow Village.

Youth & Young Adults Peer Support GroupRuns monthly on the second Tuesday, 6:30 p.m. – 8:00 p.m.Moving away from the traditional style of support group, we are focusing on creativity, fun and active leadership development.Planning Group on the last Tuesday, 5:30 p.m. – 6:30 p.m.If you want to be part of a foundational team who will learn and share leadership, develop the agendas for each group session, and welcome newcomers, then come to the Planning Group!

Parents Peer Support GroupFor parents with children with epilepsy, AND for parents who have epilepsy.Second Thursday of the Month 6:30 p.m. – 8:00 p.m.January 11th February 8th March 8th April 12th

Motion Ways A movement meditation program facilitated by Lindsay Beal.Motion Ways is not about what you look like, or what you do, it’s about how you feel… We try moving in different ways to different rhythms, with different ideas and by the end of the class, smiles abound. Come try it, or call for more information.

Date: Mondays 11:15am-12:15pm Location: Gordon Head Rec Centre 4100 Lambrick Way. Pre-register via Gordon Head Rec 250-475-7100. Current classes from January 15th - March 26, 2018, 10wks/$83 Drop in fee of $9+tax

The Brain Wave, Volume 44, Winter 2018 Page 9

A Naturopathic Approach to Epilepsy with Dr. Stephanie Bayliss and Dr. Pam Hutchison.

We all know that nutrition is critical for all of us, but what exactly is nutrition? Do you think of meat, potatoes, rice and vegetables? Do you think of vitamins and minerals? What else does the science of nutrition involve? Find out from those who specialize in nutrients and nourishment as treatments – naturopathic doctors!Dr Pam Hutchison & Dr Stephanie Bayliss, from Acacia Integrated Health Clinic specialize in neurological conditions. Of course, we are each unique, so our nutritional needs may differ, but there are general principles that can be addressed through group programs. This small group workshop is designed for optimal learning. You will learn about the most common naturopathic treatment plans for people with epilepsy and you will have an opportunity to ask questions and gain clarity.Date: Wednesday February 28, 2018Time: 6:30 – 8:30pm Location: HeadWay ~ 202-1640 Oak Bay Ave.$20 advance registration fee can be made by cash, cheque or credit card. Subsidized rates are available if requested.

ProgramsNeuropsych and Medication Review Clinic

One time private consults with Dr. M. Gheis

Do you feel social anxiety, have episodes of panic, or find your thinking and emotions are interrupting your day? It is very difficult to discern the difference between symptoms of stress, seizures/postictal symptoms or medication side effects.

To request an appointment or if you have any questions regarding the referral process, please contact Lindsay Beal, the project coordinator, at 250-475-6677 or email lbeal@vepc.bc.ca.

Presents:

CULTIVATING INCLUSIVE LEADERSHIP 2018

A weekend workshop on Skills, Awareness, and Action Plans forLiving, Learning and Leading in Our Diverse World.

~ focused on intergenerational bridge building and on reaching out to the younger generation of Inclusive Leaders

Dates: Friday, February 16, 9 am to Sunday February 18, 2 pmPlace: Cowichan Lake Education Centre, Vancouver Island, BC, Canada – a beautiful lake shore setting.Cost: Friday, Feb 16 only: $100 including lunch Friday, Feb 24 to Sunday, Feb 26:

Dormitory accommodation or commuting: $225 tuition plus $300 for food and accommodation = $525•Sponsorships: We can waive tuition for anyone who faces financial barriers: $0 tuition plus $300 for food and •accommodation = $300

For more information and registration: https://inclusiveleadershipco-op.org/

Workshops

Page 10 The Brain Wave, Volume 44, Winter 2018

Community Travel Training BC Transit offers free training to anyone who needs assistance in learning how to use the bus system. If seizures interfere with communication you may also benefit from an emergency bus card to inform drivers of the stop you need. Call (250) 384-7723 for further information.

Bus Tickets Available from our OfficeFor people who do not have a bus pass, and are in financial need, a limited number of bus tickets are available to help you get to doctor’s appointments, employment interviews or to look after children’s needs. Contact Lindsay Beal for tickets.

Hope AirSometimes your healthcare needs cannot be met in Victoria and you will have to travel off the island. If you need to travel for medical care, Hope Air makes flights available Canada wide. Once you have your medical appointment booked you can contact this non-profit organization and book a trip for yourself and one travel companion. Only round trip flights can be scheduled. Call toll-free 1-877-346-4673.

The Open Road: Travel AssistanceCummunity Corner

CALL FOR ARTThe Epilepsy Art Crew (a grassroots group of people who want to do good things) is calling artists in Victoria who have been impacted in any way by epilepsy, to submit art work for the 3rd Annual Art Show in Support of People with Epilepsy. The show, titled What Next? ~ making social impact will be on display during the month of March 2018. Location TBA. It is hoped, but not required, that each artist will donate a portion of the sale of their art to Victoria Epilepsy & Parkinson’s Centre. Funds raised will help sponsor programs and consultations for people with epilepsy.Submissions Due February 1, 2018For more info visit: www.vepc.bc.ca/eventsAny questions, please contact the art show coordinator,Terri Beaton: beatont1@telus.net

The Brain Wave, Volume 44, Winter 2018 Page 11

Executive Director’s Message

Happy Holidays and Happy New Year to all!As we draw near to the end of the year, we often reflect on what we are grateful for and look for ways to recharge and renew.

In the spirit of renewal and gratitude, I want to thank the University of Victoria MBA students who are helping HeadWay gather information about this organization to better serve YOU. The students were pleased with the response rate to the survey, and impressed with the quality of engaged conversations from the phone interviews. Overall, the response is positive, and for an organization to be in service 31 years, hearing that feedback is an incredible source of pride and motivation for the staff and the Board alike. One concern the survey revealed was that you heard about HeadWay subsequent to your diagnosis, sometimes by several months and that many pharmacists and doctors were not aware of our services. We are hearing from you that we need to be more active in the medical service community. Thank you for the feedback! One of my priorities is to strengthen and improve our connectedness with likeminded community groups to provide you with the best possible experience in accessing resources.

This is also the time of year to be very grateful for the many generous donors that support the services and programs HeadWay provides. Thank you! Without your donations, no matter the size, Lindsay could not offer the consultations that are so invaluable to you, your families and their networks of care.

Something I am truly thankful for is the HeadWay Board of Directors, our Advisory Committees and the many volunteers that generously donate their time and expertise to us. The support we get as staff is affirming and encouraging. Having this breadth of knowledge and experience allows the staff to focus on the one-on-one care and educational series we provide.

Ultimately, HeadWay is here to improve your quality of life, and the lives of your families and friends. By listening to you, being supported by our donors and volunteers, and with the guidance of our Board, and Advisory teams, we will ensure we are here to support you and your network of care throughout 2018.

I wish you all the best in the year ahead and hope that it is filled with love, peace and happiness.

Zuzannap.s. We are still looking for volunteers to help organize many events to celebrate Purple Month in March 2018. Can you help spread the word? Would you like to be on a planning committee? Can you host a garage sale to support HeadWay? If you can help, or have other ideas please contact Shannon at: soatway@vepc.bc.ca

“The Brainwave”Published seasonally

Editor: Shannon Oatway

DIRECTORS :President - Ross YoungVice-President - Matt PeulenTreasurer - Reg BeniacSecretary - Deirdre SymsDr. Alex Henri-BhargavaAndy RobinsonJennifer PeakerZen Tharani

STAFF :Executive Director:Zuzanna Szkudlarek Parkinson Program Coordinator:Maureen MatthewEpilepsy Program and Parkinson’s Outreach Coordinator: Lindsay BealCommunity Outreach and Communications Coordinator: Shannon OatwayOutreach Assistant:Ilyanna WeeksDonor Relations & Office Coordinator: Tania FritzNote from Editor, Shannon Oatway: Our newsletter and education meetings provide a range of information which does not necessarily reflect the views of our agency. Please use your discretion and consult your physician.

Canadian Mail Publications Agreement #40050532 Return Undeliverable Canadian Addresses to: Victoria Epilepsy and Parkinson’s Centre Society 202-1640 Oak Bay Avenue, Victoria BC, V8R 1B2

Advertising GuidelinesAcceptance of advertising does not constitute an endorsement by the Victoria Epilepsy & Parkinson’s Centre of the products or services listed. Distribution: Victoria & Vancouver Island Seasonal Issues: Fall, Winter, Spring/Summer. For ad rates, format, deadlines and payment options please contact our office at 250 475-6677. Any payments are made payable to the Victoria Epilepsy and Parkinson’s Centre.

Confidentiality Guidelines : Visit our website to review Victoria Epilepsy and

Parkinson’s Centre Privacy Policy.

Join us in raising awareness and funds throughout PURPLE MONTH during March 2018. It’s easy to get involved, start by decorating your home, office, business or class room in purple. HeadWay can help by providing Epilepsy Awareness Posters and we have awareness bracelets, too. Have a bake sale and donate the proceeds, or contribute a painting to the “What Next?” art show, details on pg 10. Brighten up your day and purchase purple pansies from Country Grocer and they will donate a % of the revenue to us. There are a variety of different ways YOU can get involved to help bring an end to the stigma surrounding Epilepsy. Book an Epilepsy and Seizure First Aid In-service Presentation for your business or school. Get informed and help us create a more caring, supportive community. Please call the agency for assistance.

Volunteer, Educate, Donate, Participate.