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Young Adults Support Group

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November 7 @ 6:00 pm - 8:00 pm

Are you looking to meet other young adults who have epilepsy, to share stories, resources, and transitional concerns? The Young Adults Support Group is a place where individuals with epilepsy can connect with other individuals while in an encouraging, supportive and empowering environment.

Talking to other individuals with similar stories and experiences, has proven to be beneficial for all members involved. Whether it’s to talk about what it’s like to have epilepsy, issues you may face with epilepsy, or suggestions on how to manage one’s epilepsy, one’s possible feelings of social stigmatization or seclusion may be diminished because of the connections you will make in the Young Adults Support Group.

First Wednesday of the month. Please contact Katie Lundy, Katie@epilepsytoronto.org to register or if you have any questions.

Details

Date:
November 7
Time:
6:00 pm - 8:00 pm
Event Category:
Epilepsy Toronto Team

staff_geoff

Geoff Bobb
Executive Director
416.964.9095 x214
gbobb@epilepsytoronto.org

Hey there. My name’s Geoff and I am the Executive Director at Epilepsy Toronto. It’s my job to ensure that things run smoothly around here, and that people with epilepsy and their families in this community get the support and information they need to live well with epilepsy.I view our agency as a sort of home away from home for its members; a place where one can be loved and accepted unconditionally, connect with others who share a common bond, and turn to for help when needed the most. It’s more than a professional service organization. It’s family. And I’m passionately committed to ensuring that family is as vibrant and strong as it can be.I am blessed with an amazing team of staff and volunteers who share that passion, and honoured to work at their side on your behalf.If there is any way that we can be of service to you and your family, I’d love to hear from you. Perhaps there’s something new or different you would have us provide, or some way that we could improve? I welcome your feedback. And I invite you to get involved. Volunteers and donors are the backbone of this organization. Without their contributions and support, we simply could not exist. 

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Epilepsy Toronto Team

staff_brandon

Brandon Fairley
Director of Development
416.964.9095 x 222
brandon@epilepsytoronto.org

Hi, I’m Brandon, the Director of Development for Epilepsy Toronto, but I’ve been involved with Epilepsy Toronto for over six years now. I have had the pleasure of working with the BuskerFest team working on social media, fundraising and volunteer management.

After training as a Community Worker my career path has been diverse and exciting. I have had such unique roles such as: Logistics Manager in charge of planning the Toronto Pride festival, Community Engagement and Sponsorship Manager for Pink Triangle Press across Canada, and most recently, Executive Director and Fundraising Manager for the Youth Line. I try to keep grounded in community work as a volunteer mentor and as a member of the Giving Network’s Advisory Board.

There are many ways to help support Epilepsy Toronto. Whether it’s being a peer mentor or organizing a fundraiser, I’m here to make it easy for you. Not only do we appreciate your support, we depend on it. Please send me an e-mail or give me a call and together we can work to make a difference!

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Jim Armstrong

getinspired04Living with epilepsy is hard to do, but Jim never gave up. He owes it all to music!

Jim Armstrong, is a member of Epilepsy Toronto. He is a talented musician, song writer and music producer. His company Sonic Deli Records (www.sonicdelirecords.com) has recently produced two CDs entitled “Brown Bag Lunch” – a compilation of talented Canadian musicians – including Jim, and the latest called “Mudtown”.

Jim developed encephalitis and was diagnosed with epilepsy at age seven. His seizures were relentless and wreaked havoc on his life. Getting teased by other kids was a common occurrence. In the times when Jim felt so alone, he turned to what he loved the most…music. When his attention focused on music it was magical. For those precious moments he wasn’t concerned with seizures or what anyone thought of him. It was a much-needed diversion and he continued to play music any chance he had. All of the effort he put in paid off, and at a young age he was self-taught in piano and guitar. In fact Jim could hear a song and than play it on the piano. His music teachers were always impressed, even though Jim didn’t read sheet music, or follow theory, he was talented and preferred to play his own way. By age 14, he was in a popular band that toured around his Northern Ontario town. The fellow band members were twice his age but respected his talent just the same.

Seizures continued to make life difficult for Jim, well into his adult years. Seizures occurred so frequently that Jim became afraid to go outside for fear that he would be struck by a car while having a seizure or fall into the subway tracks – both close calls that occurred. He also often felt so tired and sick because of the frequent seizures that he found it challenging to spend time playing music. Jim realized the situation was grave when in November 1999 he almost died due to a seizure. While in the studio helping the popular 90s band, Platinum Blonde, record, Jim vomited while having a convulsive seizure and aspirated. He turned blue, and the band members called 911. Even when he arrived at the hospital, it was touch and go.

That was a wake up call and made Jim consider the treatment option of brain surgery to control his epilepsy. It was risky and no one could be certain what the outcome would be. Having the surgery could potentially damage the parts of Jim’s brain that are responsible for playing music. That outcome would be pure torture for Jim. But not having the surgery meant Jim would surely continue to seize out of control and be too unwell to play music. It was a catch-22 situation and no an easy decision to make, but eventually Jim decided to go ahead with brain surgery. Surgeons removed the piece of Jim’s brain that caused seizures. After the surgery Jim was paralyzed on his let side, and longed for any sign of feeling hoping half his body would come back to normal. But he was stubborn and perhaps lucky, because despite the uncertainty of being able to play, three days post surgery Jim picked up his guitar and started to make music once again. After the surgery he was seizure free for six whole weeks. Jim started to forget about epilepsy and even what it was like to have a seizure. The euphoria didn’t last long however, and Jim did have a seizure that brought him back to reality. He was grateful though because he was having far fewer seizures. Instead of having 20 a day, he was having one a week and this gave him his life back. With less seizures, his epilepsy medication could be reduced which also benefited Jim making him more alert and energized. With this new lease on life, Jim could return to spending his days on what he loved best – making music.

Jim’s band continues to perform around the city always pleasing his audience and his company, Sonic Deli Records, keeps producing music as well. When out in the public, Jim remains dedicated to spreading the word about epilepsy and turns each gig into an opportunity to share his story with others. He also raises funds for Epilepsy Toronto through the Sonic Deli’s Annual Benefit Concert. Jim is an extraordinary person and an amazing ambassador for the epilepsy community. He knows that there are still misconceptions around this epilepsy and he wants to eradicate those so people living with seizures don’t have the extra burden of stigma.

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Karima Panjwani

KARIMA-PANJWANI

Karima Panjwani is 18 years old and has epilepsy. This past August this university student participated in the epilepsy youth conference “BE HEARD” organized by Epilepsy Toronto and the Canadian Epilepsy Alliance. She was eager to talk openly about her experience with epilepsy, and share her opinions in order to help shape a province-wide epilepsy youth campaign.

It wasn’t the first time Karima has done her part to teach youth about epilepsy. “Grade six was the first time I had openly spoken about epilepsy to a group of kids. I did a presentation on epilepsy and decided to tell my classmates that I had seizures”, Karima remembers. She was nervous and uncertain of their reaction but gutsy enough to go ahead just the same. Although most of her class was understanding, she remembers one boy in particular who tried to embarrass her any chance he got. “After my presentation he would bring a flashlight to school, shine it in my eyes and try and make me have a seizure. When I didn’t, he would fall to the ground, flap around and imitate one.” But despite his negative reaction, Karima didn’t regret telling her class about her seizures. In her eyes it was a great success because some of her classmates did learn more about epilepsy and would be more sensitive not just towards her but to all people with seizures. That, she realized, was something to be proud of and she has been open about her epilepsy ever since. Naturally she wanted to get fully involved in the youth conference, alongside 23 other brave teens. At the conference, Karima offered her experiences, shared her concerns and brainstormed on how to solve the lack of understanding about this condition, particularly among other youth. “I wanted to be heard because I know a lot about stigma and have some good ideas on how to deal with it”, Karima says.

Karima is proud that she contributed to the outcome of this important educational campaign – the first of its kind, and she is also very happy about another positive outcome of the conference. “This was the first time I met people my age with epilepsy” Karima says. That was critical because while Karima, a bubbly, young woman who makes people laugh easily with her quick wit, has many friends, she has never had one that truly understood what life with epilepsy is like, until now.

We congratulate Karima for working hard to create more understanding about epilepsy. She hopes her efforts to increase epilepsy awareness will mean other youth with epilepsy will face less ridicule about their seizures in the future. She believes her openness may encourage someone else living with seizures, who feels ashamed or anxious, to step out of the shadows and feel more comfortable with themselves – epilepsy and all.

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Sharron Brandt

SHARRON-BRANDTSharron Brandt shows what real dedication is all about…

Sharron Brandt is a member of Epilepsy Toronto. Born a month premature with the cord wrapped around her neck she had a seizure as soon as she entered the world. Complications due to the lack of oxygen caused her to develop epilepsy and significant mobility impairment in her arm and leg. In fact, Sharron didn’t walk or even crawl for the first four years of her life. A meeting with a chiropractor finally changed that and he slowly helped Sharron take her first steps. Now, years later, she gets around with a cane or uses her walker for longer distances.

“You can imagine my surprise” Sharron says “when my counselor at Epilepsy Toronto suggested I enter the 5k race to support epilepsy. I was shocked and just said – I can’t. I won’t.” But her counselor kept bringing up the subject and Sharron started to reconsider what it all really meant. Being a part of the Epilepsy Team in the Scotiabank Toronto Waterfront Marathon was a chance, she realized, to be a part of something bigger. An entire community impacted in some way by epilepsy all gathering together, out in the open, to celebrate epilepsy and their abilities. The idea stood in stark contrast to the days when Sharron was a little girl and epilepsy was taboo. “In those days we called them fits, and the whole topic was hush, hush.” Sharon admits. She also remembers how difficult it was to make friends and feel normal with her disability that caused her to walk so differently from all the other kids. The idea of being out in the open, proud, wearing a t-shirt with epilepsy emblazoned on the front became very appealing and she decided to join the Epilepsy Team after all.

Sharron got to work, collecting pledges – sometimes a loonie from a neighbour, sometimes bills from the staff at her local grocery store. She would ask just about anyone, and even if they didn’t pledge her, it gave her a chance to tell them what she was doing and how important this cause was. “I figured that asking for pledges and raising money was the easy part – a lot easier than walking”. Within weeks she had raised hundreds of dollars for Epilepsy Toronto and her smile beamed from ear to ear.

On race day, Sharron’s heart pounded fast and she was admittedly nervous about the long trek ahead. She got off to a rocky start and stumbled, falling to the ground, just a few meters from the start line. “At that point I wanted to quit and say – ‘see I told you I couldn’t do this’ – but before I knew it my counselor from Epilepsy Toronto scooped me up and we were walking again.” After the first two miles Sharron’s body began to ache and she was nearly out of breath. To give her a short break her counselor and fellow teammate Kelly took turns pushing her in her walker. But before long she was up and at it again – proudly walking alongside her teammates.

As she approached the finish line her counselor took her walker away, grabbed her by the hand and they walked across the finish line. The crowed erupted in cheers. “I felt so proud” Sharron says “and everyone was congratulating me. I think I showed a lot of people that day that having a disability doesn’t mean you can’t do things.”

Sharron has proudly completed two Scotiabank Toronto Waterfront Marathon 5k races and is likely gearing up for 2009. She knows it won’t be easy, the memories of her team and her big finish (two of them to be exact) keep her going. Indeed Sharron is an inspiration and she proved that determination and courage can get you far – even a lot farther than 5k.

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Crhistine Crosbie

ccrosbie“You want me to get a LOBOTOMY??” was my response when my neurologist first suggested surgery as a treatment for my seizures. “A lobectomy,” he corrected, and went on to explain that if surgeons could locate the focus of the seizures, they might be able to go in and carefully remove whatever was causing them. Maybe plaque, some tiny growth or a scar from a long-ago injury or illness. Apparently people can get by quite well with out a part of their “grey matter”, and with some types of epilepsy the majority of patients can be seizure-free (or significantly improved) after surgery. Sounded good to me.

I had been having nocturnal seizures for a couple of years. They started in my mid-thirties, when I was anchoring the early-morning news program, a job that required getting up at 3:30 a.m., downing a few cups of coffee and reading the news live on television for three hours. Combine that with two kids and a jet-setting husband, and I was chronically tired with a 10 cup-a-day coffee habit.

A year after diagnosis, I left the morning show for a more civilized day shift, but the seizures didn’t go away. I even began having tonic-clonic seizures during the day: I had one in the newsroom, one on the bus going home from work, and one on my neighbor’s front lawn after an 8 km run (there nothing like coming-to with lawn mower clippings stuck to my face, neighbors peering from their front doors and a cute paramedic flashing a light in my eyes).

My doctor put my name on the list for the Epilepsy Monitoring Unit at the London Health Sciences Centre. The wait could be months, but staying in hospital hooked up to monitors was the best way to tell if I’d be a candidate for surgery. Amazingly, this was my first time around people with epilepsy. There were about a dozen beds filled with patients, each with his or her own seizure story. Some, paradoxically, were hoping to have a seizure so they could get their test results and go home, yet in the stress-free quiet surroundings of the EMU nothing happened.

I was lucky, sort of. They took me off my medication and I began to have seizures within a couple of days (at least I knew the pills were doing something). The glued-on EEG electrodes didn’t capture enough information, so we opted for the subdural kind. This would mean laying a grid of platinum sensors on the surface of my brain, my surgeon explained. I suddenly clued in that this would require the use of power tools and–worse yet–shaving my head. Somehow the idea of having my head cut open didn’t scare me too much. I had witnessed several surgeries as a reporter and had complete faith in my neurosurgeon. I started contemplating which earrings would look best with a crew-cut.

After a few days with this new setup, wires trailing out of my bandaged head, the doctors informed me that the seizure activity was widespread. I was having subclinical seizures (seizures that didn’t have external symptoms) at night that I wasn’t aware of. Surgery wasn’t an option; it could lead to the loss of use of my left hand, or worse. Instead of being upset that I wasn’t going to be “cured”, I was relieved that they didn’t find any abnormalities. A biopsy also confirmed I didn’t have any rare degenerative diseases.

I went home feeling satisfied that I had explored every possibility for getting better. Sure, I missed three months of work (I waited for my hair to grow, there was no way I’d wear a wig), and had 53 staples in my scalp, but I wasn’t dying, and I wasn’t getting worse. I could live with the seizures.

About six months later I did a story on brain surgery for the news. My neurosurgeon invited me into the operating room to witness the surgery I had hoped to be eligible for. It was amazing! He used incredibly precise surgical instruments and 3-D imaging technology to zero in on the exact target area and remove a tiny scrap of tissue. Everything was done in a controlled, clean manner, no worse than watching a dentist drill a cavity. The patient had allowed me to film the surgery, and I was honoured to have the opportunity to see something only medical professionals can see. I later learned that the patient’s operation was a success, and she no longer had the seizures that severely affected her quality of life.

Today, I have the right combination of medication that has few side effects, yet keeps the activity down to partial seizures in my sleep. Since my surgery, I have made a group of good friends at Epilepsy Toronto who are in the same situation as I am: they are writers, parents, musicians, medical professionals, bankers and they have seizures, but they don’t let it stop them from living their lives as well as they can. We encourage each other, commiserate, and laugh at each others’ stories the way nobody else can, and we try to help each other get over the hurdles that epilepsy can present.

I still geta chill when I run past the neighbor’s lawn where I once lay twitching and foaming at the mouth. But there’s a certain satisfaction in continuing on past that point and knowing I can go even farther.

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Wendy Morris

wmorrisWendy Morris has more seizures than most and her seizures are more restricting than most, but this woman also has more personality than most! When Wendy had a seizure on the bus, a stranger stayed by her side until she was ready to go home. When Wendy needs to buy her groceries, one of her neighbours will take her to the store and help her with her bags. When Wendy needs to visit her doctor, another one of her neighbours will drive her there and bring her back home. Last year, over 14 of Wendy’s friends and neighbours joined a “Friends and Family Workshop” facilitated by the counsellors at Epilepsy Toronto – just so they could better understand what having epilepsy means to Wendy. Wendy has an extraordinary network of people helping her with her daily needs, but that probably says more about her warm personality than it does about her frequent seizures.

Wendy started to experience seizures when she was in her twenties and pregnant with her first child. She was diagnosed with epilepsy, but with medication, she was able to fulfill her dream of working as a child caregiver. Her career took off and she was soon busy working for private families and daycares doing what she loved to do – looking after others. However, once she was pregnant with her second child her seizures increased in intensity and frequency. Different medications were tried, but the seizures were not going away.

That’s when Wendy had to make the hard decision to end her fulfilling career. She loved her work, but couldn’t risk putting a child in her care in any danger.

For people like Wendy who live with persistent seizures, it’s the simple things that are hard to give up; like going out for a coffee on her own or cooking her son’s favourite dish in the kitchen. These ordinary actions, that most of us take for granted, aren’t as simple for a person in danger of falling on the street or burning herself on the stove if she should happen to have a seizure alone. It’s been hard for Wendy to learn to depend on others and to accept losing her career.

At first, Wendy didn’t come willingly to Epilepsy Toronto. Visiting the Epilepsy Toronto office was a final step that to her, meant fully acknowledging that her life had truly changed. However, once she took the step inside, Wendy realized that she had found a place where she didn’t have to feel embarrassed or worried if she had a seizure. She jokes that in fact, it is probably the best place to be if she has a seizure. Wendy bonded quickly with one of the counsellors who helped Wendy to re-examine what life with seizures was going to mean. She joined the Friday Recreation Group, where adults with epilepsy can gather to enjoy outings like sailing and picnics and participated in individual and group counseling. Wendy is now a very familiar face at Epilepsy Toronto and a delight to all of the staff.

Wendy still gets depressed sometimes about her challenging situation. But somehow, her warm and caring personality still shines through and invites the love and support she receives from her large community of supporters. Wendy’s team comes out in full force during Epilepsy Toronto’s Annual Scotiabank Waterfront Marathon. For years now Wendy has arrived at the starting line, dressed in purple, with a big smile and a large group of friends who stay with her – right to the finish line.

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Bruce Hilliard

bhillardI can still remember waking up in the hospital’s emergency ward in March of 1997, in the middle of the night, surrounded by medical professionals and a doctor asking me questions. My last memory before that was falling asleep in my bed, preparing for another exciting day as a Chartered Accountant and income tax professional managing the Business Advisory Services department of one of Canada’s largest trust companies. I had a grand-mal (Tonic Clonic) seizure while sleeping and my wife Kellie called 911. As I had experienced a minor absence seizure the previous summer the doctor diagnosed me as having epilepsy. He prescribed an anti-convulsant medication and he referred me to Epilepsy Toronto for information and social support in dealing with my new disease and disability.

My Complex-Partial epilepsy resulted in two small “strange behaviour” seizures over the next several months at work. The interesting thing is that I never felt that I had a problem or disability. When I awoke from my seizures, I had no memory or recollection of the behaviour; just a strange sensation which gave me instant knowledge that I had lost some time. I carried on and completed my work day.

I was forced to take a long term disability leave, six months after the company’s LTD plan had been reduced from 70% of my pay to 50%. My Employment Counsellor at Epilepsy Toronto tried valiantly to have my position restored; with offers to present a “lunch and learn” to inform my colleagues on what to do in the event I had a seizure while working. My employer refused to allow me to return to my position claiming that my seizures prevented me from getting my work done and that I needed my driver’s license, even though I could take the TTC and taxi rides the few times per month that I needed to travel to attend client meetings.

In my late thirties with a household to run with my wife, a Registered Nurse, and two growing boys, I suppose in retrospect I was somewhat defiant and in denial, having been thrown off of my career track. I couldn’t stand the thought of sitting home every day watching Regis on television. So I called a lawyer I knew from earlier political and election activities and he connected me with the Executive Director of the political party I was a member of. Within one week I found myself travelling downtown and volunteering at their office making telephone calls and attending organizing meetings for political dinners and events. It kept me busy at the same time that I found my way through a series of neurologists who attempted to assist me with a variety of medications to control my seizures.

Eventually the seizures became controlled to the point where my driver’s licence was reinstated, but my employer refused to allow me to return to my job, claiming the position had been centralized to their head office outside of Toronto. I would have had to uproot my immediate family, Kellie would have had to terminate her secure nursing job, our boys would have had to leave their school and friends and we all would have had to leave our parents and siblings behind to move two hours away and start a new personal life, with certain employment uncertainty and financial insecurity lying ahead. So I left my employer to become self employed as a financial planner. However, after a year the seizures returned and I had to leave that position as I couldn’t drive. I then went through several jobs, each terminated on account of the discrimination I experienced from having the occasional seizure. In 2004 the accounting firm which hired me discovered that I had left my financial planning position on account of medical circumstances. I disclosed my disability to the managing partner in the course of the interview process and assured him having the occasional seizure would not impact on my job performance. I had one seizure at the office during the 5th month of my 9 month probation period, and then worked with the Employment Counselors at Epilepsy Toronto to draft a written Accommodation Plan which I had distributed to the employees of the firm to inform them about what to do in the event I had another seizure in the workplace. There were no more seizures while working there however at the end of my probation term I was called into a meeting. The tax partner told me that my performance had been good but the managing partner told me they had made their decision not to continue my employment past the probation period “because of my circumstances”. In response, I filed a complaint with the Ontario Human Rights Board, which took over a year to work its way through the system, and eventually led to a small financial settlement.

Kellie and I talked at length and we decided that I should consider surgery to attempt to correct the seizure problem. Previously in 2003 I had been referred to one of the world’s best epileptologists, Dr. Frederick Andermann, OC, with the most renowned neurological hospital in the world for epilepsy, the Montreal Neurological Hospital, since rebranded The Neuro, because the Toronto neurological medical center had not been able to source my epilepsy. In November, 2005 I had surgery on my right temporal lobe, a right selective amygdalohippocampectomy performed by Dr. André Olivier, one of the world’s best neurosurgeons for epilepsy, three months after an initial procedure when he implanted intra-cerebral electrodes into my brain to further delineate the site of onset of my seizures, which was discovered to be in my right temporal lobe. I spent the next few years continuing to look for work. It was a tough job trying to keep my resume current; both to hide my disability as the source of the dismissals, and make it appear that my several positions were not the result of poor performance. In 2007 I landed a couple of excellent short term contracts, which then led to a permanent position in the tax department of one of Canada’s major banks. While my seizures continued to be controlled, the side effects of daytime fatigue and occasional blurred vision from my heavy doses of multiple medications started to affect my performance.

I approached my Employment Counsellor at Epilepsy Toronto to assist me in disclosing my disability. The bank made some minor accommodations to the position, however as my work pace continued to be slower than their expectations, my doctors recommended that I take a disability leave. While most people with epilepsy are able to control their seizures with moderate doses of one or two medications, my epilepsy is more severe and requires many anti-consultant medications in heavy doses. I have now come to realize that while a tiny percentage of the population develops epilepsy, an equally tiny percentage of people with epilepsy end up having a disability that is severe enough that that they are no longer able to work. After a two week medically supervised medication adjustment in early 2011 my seizures returned while I was taking my disability leave. In early 2012 I decided to have a second brain operation, an anterior temporal resection of my right temporal lobe, which was performed by Dr. Olivier and his surgical team over seven hours in April, 2012 to further remove epileptic tissue. Dr. Andermann and Dr. Olivier told me that the surgery, if successful, would hopefully improve my quality of life even though I would still be unable to work. In June, 2014 I returned to see them for the third time since the April, 2012 surgical operation on my right temporal lobe. My EEG test results again revealed that I no longer have epileptic activity in my brain, which matches with the fact that I have not had a seizure since the anterior temporal resection. Dr. Andermann and Dr. Olivier are both delighted with the positive result. My driver’s licence was reinstated and I have been driving the family cars since August, 2013 and driving on my own including superhighways since 2014.

In 2010 while I was on disability leave I auditioned for the United Way’s Speakers Bureau and volunteered at their 2010 and 2011 Campaign kick-off events. I have told my story of how Epilepsy Toronto has supported me so strongly with information, counselling and employment support throughout my years of disability. I have spoken to several organizations and many corporate and government employees, receiving several letters of thanks and compliments about how my story inspired their employees to donate to the United Way, which in turn funds Epilepsy Toronto. I was invited to their January, 2011 Celebration Dinner as I was chosen as one of the top ten speakers from their campaign. This was a special event for me, knowing that I have been able to give back to Epilepsy Toronto after having received so much in the way of support and assistance over the years. Although I did not participate in the United Way’s 2012 campaign because my medical recovery from the second brain surgery took longer than expected I intend to continue to volunteer my time to United Way and to Epilepsy Toronto now that I have available time. I also am volunteering my time to other community organizations in Markham to stay active and so these organizations can benefit from my professional accounting, tax, and financial experience.

I could not have survived the past two decades of medical disability emotionally or psychologically without the love, dedication and support I have received from Kellie and my sons Mark and Chris. Kellie’s medical background has helped interpret the huge amounts of medical information that we have received over the years, and our family’s religious faith has assisted me in understanding that things happen for a reason.

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Lauren

laurenI had never even heard of epilepsy till grade 9, when I saw one of the student in my class having regular seizures. Like many other students, it was new to me (and sad to say we could have been more sympathetic.) Then the tables turned, when in grade 11, I myself started to have seizures. After many MRI’s and EEG’s we discovered I was having the seizures because I too had epilepsy.

With the love and support of my family and friends my coping method became laughter. I would do my best to just laugh the seizure off and began to live by the old saying “Laughter is the best medicine.”

Throughout the years, I continued to use that coping method, while the doctors added a second medicine, continuously raising the doses. However, the seizures continued. At that point, my neurologist decided we should take a different route. He suggested we see if I was a candidate for neurosurgery. After undergoing a weeklong EEG, at the hospital in London, Ontario, we learned that a left temporal lobectomy was possible. I made the decision to go with it. We scheduled the surgery with Dr Andrew Parrent a few weeks later.

After the surgery, I received help at the Sudbury Brain Injury Association for a year. My time was filled with visits to a speech pathologist, recreational therapist, social worker and a psychologist. They helped me recover by doing regular brain exercises and tests to help me recover from the brain trauma. While receiving their help, I decided I wanted to go back to school. They were honest with me and told me they didn’t think I was quite ready. As much as I appreciated their honest opinion I still chose to go to school in the mornings and received their help in the afternoons.

After a year of upgrading at Cambrian College in Sudbury, I choose to take the Social Service Worker Program at Canadore College in North Bay. During the two year program I willingly turned to the Special Needs Center, where I received help on numerous things? Taking the initiative to visit the Special Needs Centre helped me to accept that both my seizures and brain trauma affected me – but I could work around it and still learn like any other students. In doing so, I became very appreciative, set higher goals for myself and worked hard to reach them.

Out of my personal interest I chose to do my second year placement here at Epilepsy Toronto. Doing so, was an amazing learning experience for me and frankly, for the epilepsy team. In the office I was made to feel very welcome, and was always treated like a professional. Being a young woman with epilepsy made me a valuable resource for the organization, being able to talk about the real impacts first hand drawing from my own experiences. After four months working at Epilepsy Toronto I went home to graduate feeling empowered and ready for the future.

Recently, I was hired as a personal support worker at Nabors, a charity dedicated to supporting people living with disabilities. I am thrilled with my new job and look forward to more independence in my life and yes, I’m still working on the “Laughter is the best medicine” technique to enjoy my life.

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Epilepsy Toronto Team

brookeBrooke Barrington
Social Worker, Adult Services
416.964.9095 x224
brooke@epilepsytoronto.org

Hi there! I’m Brooke and I am a social worker and part of the Adult Services team. I am here to support you in any way I can. I provide counselling and advocacy to adults, couples and families affected by epilepsy and I strive to create awareness and an informed understanding of epilepsy within the community. I am very passionate about working collaboratively with people and am honoured to be a supportive figure in people’s lives. Hearing people’s stories of strength and resilience is a privilege and I work hard to ensure that my work with individuals is an empowering experience. If you have any concerns regarding your health, relationships or simply need someone to talk to, I am here for you!

I hold a Masters degree in Social Work as well a Bachelors in Social Work and Family Studies. My education and experience working in the field of mental health with diverse communities helps to prepare me for my role. I am passionate about the work that I do and am committed to providing support in a friendly and accepting environment.

Please feel free to call or e-mail me if you are an adult living with epilepsy or if you know someone with epilepsy. I look forward to hearing from you!

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Epilepsy Toronto Team

chammettCarter Hammett
Co-ordinator, Employment Services
416-964-9095 x212
carter@epilepsytoronto.org

Hey, my name’s Carter and I’m the Manager of Employment Services.
During my time here I’ve found myself deeply moved by the inspiring stories I’ve heard: Stories of courage, resilience and hope. Often those stories centre upon the struggle to maintain a livelihood while dealing with the challenges of epilepsy and its related conditions.

I’m here to help you plot strategies around issues like disclosure, self-advocacy and accommodations. If you need help with career planning, resume writing, interview skills or job maintenance issues, than I’m your “go-to” guy for those things as well. Together we can identify realistic career goals and the methods of accomplishing those goals.

I also offer a broad array of employment related-workshops to both our stakeholders and employers which I’m happy to customize to your individual needs.

With over two decades’ worth of experience in social work, employment counselling, journalism and adult education across a broad range of sectors, I am also a graduate of Cape Breton University with a degree in Community Studies.

I look forward to meeting and working with you!

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Epilepsy Toronto Team

joannaJoanna Kapusta
Office Manager
416.964.9095 x210
joanna@epilepsytoronto.org

Hello there! I am Joanna Kapusta the Office Manager at Epilepsy Toronto. I am usually the first face you see when you enter our office and the first voice you hear when you call, and if it needs to be done, I am probably doing it. I am a true generalist who lives to serve others and I truly believe that there is no job that is too big or too small. As a result, I have done event planning, fundraising, research, knowledge mobilization, database management, business analytics, and even some human resources. I represent Epilepsy Toronto and our community at the Ontario Brain Institute, working to bridge the gap between community need and research. If you need something, give me a call. If I can’t help you, I will find someone who can!

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Epilepsy Toronto Team

achnaArchna Kurichh
Job Developer/Employment Counsellor
416.964.9095 x217
archna@epilepsytoronto.org

Hi, I’m Archna, the Job Developer/Employment Counselor for Epilepsy Toronto. You can come and meet with me and we can talk about finding a good job fit to meet your employment needs. Together we can assess your strengths, skills and look for other areas of employment. I also go out into the community developing employer relationships so we can match you to the right job. I can also assist both you and your employer to have the right accommodation for your maximum success. I look forward to meeting with you and speaking with staff in your workplace.

I have more than 15 years of experience in the non profit sector and my background includes volunteer and project management, settlement, employment services and working with diverse communities. I want to hear from you and believe with information and education we can create understanding and awareness of epilepsy so you can pursue your dreams. I look forward to working with you.

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Epilepsy Toronto Team

katieKatie Lundy
Director of Children and Youth Services
416.964.9095 x 221
katie@epilepsytoronto.org

Hi, I’m Katie. As the Director of Children of Youth Services, I am here to lend my support and provide services, resources and experiences, to any child, youth, young adult and their family members.

I’ve been involved with ET for 3 years now, originally working for many of our fun events; BuskerFest, BuskerBall and Gift Wrap where I’ve had the chance to be involved in our diverse programs and active epilepsy community.

I have a Masters of Social Work degree, specializing in Children and Families. As well I hold a Bachelor of Arts degree, with a Psychology and Sociology focus. My years of experience in the field of social work and counselling have centered around individuals and families with epilepsy, autism, and learning difficulties, both in Canada and the United Kingdom.

Here at Epilepsy Toronto, I am committed to creating a safe, supportive environment for all clients and their needs. My goal is to educate and empower, in order to create a welcoming, more connected and positive environment for those living with epilepsy. As well, to help foster an understanding about epilepsy among our community.

If you have any questions or feel like talking, please feel free to email, call or stop by my office to introduce yourself. Looking forward to hearing from you.

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Epilepsy Toronto Team

piaPia Marin
Financial Services Manager
416.964.9095 x 213
piamarin@epilepsytoronto.org

Hello, my name is Pia. I am the Financial Manager for Epilepsy Toronto and I manage all of the donations, event monies and accounting at the agency.

I joined Epilepsy Toronto after completing the accounting program at Humber College in 1986 and I have been with the organization for over 20 years. I am proud to be part of a caring community, concerned for the well-being of those affected by epilepsy.

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Epilepsy Toronto Team

tanyaTanya McCormack
Recreation Group Coordinator
416.964.9095 x228
tanya@epilepsytoronto.org

Hi my name is Tanya. I am the Recreational Group Coordinator.

The group caters to the social needs our Adult members by providing members with the opportunity to have fun and develop friendship by making connections with others who share similar concerns and issues.

We meet every Friday afternoon to participate in activities such as Art, music, discussions, outings, as well as sharing a meal.

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Epilepsy Toronto Team

mackenzieMackenzie Muldoon
Entertainment and Marketing Director for the Scotiabank BuskerFest in support of Epilepsy Toronto
416.964.9095 x 223
mackenzie@torontobuskerfest.com

Hi, I’m Mackenzie and I am the Entertainment and Marketing Director for the Scotiabank BuskerFest in support of Epilepsy Toronto. I’ve been working with Epilepsy Toronto on this event since it began back in 2000 and I have watched it grow into the incredible festival it is today. Not only is it Epilepsy Toronto’s largest fundraising event of the year, it is also the largest festival of its kind in North America and the largest epilepsy awareness event in the world!

For the festival, I take care of the performers and many aspects of the promotion and publicity of the event. It makes me very proud to work on such a unique and vibrant arts festival that hosts performers, and spectators from around the world. But it makes me even prouder to know that it’s all in support of such a great cause.

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Epilepsy Toronto Team

nicoleNicole Nelson
Director of Development
416.964.9095 x 225
nnelson@epilepsytoronto.org

Hi, I’m Nicole. I am the Director of Development for Epilepsy Toronto. I have been involved with this fantastic agency for 9 years now and I’m inspired each week by our members. I am inspired because so many of them manage the difficult challenges of epilepsy but never seem to lose their dedication or resolve. Epilepsy Toronto is a great place to work and I am honoured to be part of this community.

I have worked largely in communications and event management, and have been involved in the non-profit sector for over 15 years now. As the Director of Development, I am responsible for soliciting donations, organizing some of our fundraising events and finding new and creative ways to increase our funds so that our agency can continue to run our specialized programs and services.

If you have fundraising ideas or would like to know how you can help us in a fundraising capacity, please send me an e-mail. I look forward to hearing from you.

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Epilepsy Toronto Team

rachaelRachael-Lea Rickards
Director of Public Education and Outreach
(416) 964-9095 x212
rachael@epilepsytoronto.org

Hi, I’m Rachael-Lea, Director of Public Education and Outreach. Being a Jamaican born Canadian citizen, I certainly understand the challenges of racially diverse communities. Recognizing the importance of epilepsy awareness, my goal is to ensure that all communities have a firm grasp on what to do and how to support those living with epilepsy.

I come with a background of Training and Development as well as a Social Service worker diploma. My passion is also in the arts. Being an actor, playwright and published author, I bring creativity to my position and look forward to sharing my strengths so that Epilepsy Toronto continues to thrive and touch lives. If you have any questions in regards to community awareness, diversity and/or inclusion, please do not hesitate to contact me.

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Epilepsy Toronto Team

bonnieBonnie Taylor
Hi, am Bonnie “Tornado” Taylor the festival director for Scotiabank BuskerFest & the BuskerBall. I have had the great privilege of working with Epilepsy Toronto on this great event for the past 7 years. In addition I help out with ET’s Gift Wrap for Epilepsy, the annual Holiday Feast and Purple Day. Looking forward to continuing to bring Epilepsy “Out of the Shadows.

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Epilepsy Toronto Team

drewDrew Woodley
Director of Communications
416 964 9095 x224
drew@epilepsytoronto.org

Hi There. I’m Drew, the Director of Communications here at Epilepsy Toronto. That means I’m responsible for all of our materials and newsletters, our visibility in the media, our website, and our social media presence. More importantly, I’m here to tell our stories: the stories of the agency and the work that we do; the stories of our members and their experiences living with epilepsy.

My background is in Political Science, with Bachelors and Masters degrees from York. Most recently, I worked in the constituency offices of Jack Layton and Peggy Nash doing communications and casework.

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Epilepsy Toronto Team

rosaleeRosalee Robinson-Smith
Director of Adult Services
416.964.9095 x216
rsmith@epilepsytoronto.org

Hi, I’m Rosalee, but you can call me Rosie. Are you living with epilepsy and don’t know who to turn to? Don’t worry, I am your go-to person! I provide services and run programs for adults living with epilepsy and their families.

I am constantly amazed and inspired to witness the resilience and courage demonstrated by our members as they struggle to cope with the impact of epilepsy. If you need support and guidance, then come see me! I am available to assist with counselling for individuals, couples and families. I facilitate support groups, advocate and provide information and epilepsy training to the community. My passion is people and my mission is to empower and make a positive difference in the lives of those I serve.

I hold a Masters degree in Counselling Psychology, as well as graduate certification in social work, nursing and midwifery. My years of experience in the field of counselling, social work, teaching and training, has enabled me to work effectively in this role. I am committed to listening and responding to the needs of our adult members and providing the support needed in a warm and caring atmosphere. Call or e-mail me if you are an adult with epilepsy or you know someone with epilepsy. I will be happy to help!

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Employment FAQs

What are the key issues affecting epilepsy and work?

The central issues are lack of knowledge about the disorder and epilepsy’s perceived impact in the workplace. This ignorance and resulting misunderstanding produce unnecessary fear and anxiety among both employees with epilepsy and employers. Specific concerns regarding disclosure, accommodation, safety and liability then arise, and a vicious circle ensues.

Workers with epilepsy face negative and uninformed attitudes, outright (and illegal) discrimination, sometimes unnecessary driving requirements, fear of repercussions after disclosing and under-utilization of their skills. On the other hand, employers worry about productivity, absenteeism, liability, job performance, reaction of customers or co-workers, accommodation costs and workplace safety.

 

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What about unemployment and under-employment among people with epilepsy? 

The unemployment rate is double that of the general population. Under-employment is also a serious problem: about 40% are not given jobs that fully use their skills. A Canadian National Population Health Survey conducted in 1994/1995 showed that only 40% of adults (16 years of age and over) with chronic epilepsy were employed. In comparison, 60% of adults without epilepsy had jobs. These figures reveal a major under-utilization of the varied job skills which people with epilepsy possess. Likely factors are epilepsy’s social stigma, employer prejudice due to ignorance and misconceptions about epilepsy, and safety and liability concerns.

 

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Does epilepsy interfere in job performance or productivity?

Overall, there is no difference in job performance or productivity between workers with epilepsy and other workers. In fact, studies have shown that the work performance, cooperative behaviour, productivity and stability of employees with epilepsy is equal to or greater than that of employees without epilepsy. And absenteeism rates are lower too because workers with epilepsy practice good self-care and strive to avoid illness.

Accident rates for employees with epilepsy are lower too: 06% vs. 1.92% for non-epileptic employees. Some studies have even revealed that employees with epilepsy work more attentively and productively than others, as they often try harder to prove themselves at work.

Only a few occupations are prohibited for people with epilepsy. The consistent reason in these cases is the possibility of endangering the lives of others, or the individual with epilepsy, should a seizure occur. Examples are airline pilot and certain roles in the armed forces.

 

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What role do psychological factors play?

The employee or job-seeker who has epilepsy often experiences fear of discrimination, low self-esteem, lack of self-confidence, and feelings of emotional and job insecurity. The employer may be prejudiced against workers with epilepsy because of the unpredictability of seizures and ignorance about the disorder. This attitude may then translate into excessive concern for safety, liability and the presumed negative perceptions of customers, clients or co-workers.

Education about epilepsy – what it is and what it is not – for both the person with epilepsy and the employer is essential to overcome these psychological barriers. Contact the Employment Consultant at the Epilepsy Association for more information about epilepsy and the workplace.

 

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What medical information can an employer ask me during the hiring process?

It is illegal for an employer to ask medical questions on an application form under the Ontario Human Rights Code. Should such a question appear on an application anyway (likely due to employer ignorance), you can refuse to answer it.

The employer may, however, ask you questions during the interview to determine your ability to perform the particular job. A sample appropriate question would be “Do you have any medical condition which would interfere with your ability to perform this job?” It is illegal to ask, “Do you have any medical problems?” In other words, a medical question in the job interview must be tied to ability to do the job, not just to gather information.

A work-related medical examination may only be requested after a written offer of employment.

 

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When should I disclose my epilepsy to my employer?

You can disclose your condition at any time or not at all, depending on your comfort level and how active your seizures are. There is no right time for everyone; it is an individual decision. Whatever time you choose, including never, will have both advantages and disadvantages. These are outlined on the Epilepsy Disclosure Chart (contact us for a copy). Many people who have active seizures think the best time to disclose is after the job offer is made, so as not to run the risk of clouding the hiring decision. But some say this introduces an element of jeopardy into the probation period before you are permanently on staff.

An equally important issue is how to disclose. It is essential, above all, for you to have a thorough knowledge of your own epilepsy. Relevant information about what others can expect to witness and how they can best respond to your needs should be communicated clearly, calmly and concisely. Your employer will be guided to react appropriately by your knowledgeable, reassuring manner. This approach promotes understanding and flexibility in the workplace.

It is important to remember that disclosing to your manager or human resources department does not confer permission to tell your co-workers. This information is confidential. If safety issues are a factor, the employer may want your immediate co-workers to know, so that appropriate measures can be taken when or just before you have a seizure. The employer should, however, discuss the matter with you first. It is generally better for you to disclose to your co-workers yourself so that you can present the information firsthand in the way that seems best to you.

 

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What should be done if a seizure occurs in the presence of customers or clients?

Know and follow appropriate first aid measures as described in First Aid for Seizures. Ensure that someone stays with the person having the seizure to monitor the situation and provide reassurance. A seizure should be timed from onset; call 911 if it lasts 5 minutes or more OR if another seizure begins before full recovery from the first. Explain calmly and matter-of-factly to any bystander that a seizure is happening and that the situation is under control. Your manner will deflate any anxiety or fear others may be feeling. A seizure may be upsetting to watch, but it is also a fact of life like fainting or accidents or heart attacks. Such events are memorable but not stigmatized. Seizures should be no different.

 

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Do employers have to make accommodations for employees with epilepsy?

Both the Ontario and the Canadian Human Rights Codes state that employers must accommodate people with disabilities UNLESS the disability interferes with performing the essential aspect of the job OR such accommodation causes the employer “undue hardship”. This means an employer must, in most cases, make every reasonable effort to adjust the duties or conditions of work to meet the constraints of the disability.

When epilepsy is the disability, common accommodations might be keeping the worker away from ladders and other height-related areas, scheduling a steady day or evening shift, altering lighting to eliminate flickering, not requiring lots of overtime, being flexible about how to make up time or taking work home, etc. Workplace accommodations for epilepsy are inexpensive, easy to make, and only require a little creativity and flexibility.

 

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What about liability?

Like other employees, people with epilepsy are covered by the Workplace Safety and Insurance Board (WSIB), formerly known as the Workers Compensation Board. A common misconception is that premiums will rise if people with epilepsy are on the payroll. Actually, rates are tied to the type of company and the claim rate, not to employee disabilities. Workers with epilepsy are usually very safety-minded and are unlikely to cause preventable accidents, for example through carelessness.

Also, WSIB has a Secondary Injury and Enhancement Fund, which compensates for losses to both the employer and the employee in the event of any injury arising from a seizure, as long as the employer is aware of the condition before the accident occurs. The claim is assessed separately from regular accident claims and is therefore not added to the yearly WSIB rates.

It is not “expensive” to have people with epilepsy on staff.

Workplace Safety and Insurance Board
(Workers Compensation Board)
200 Front Street West
Toronto, ON M5V 3J1
Tel: (416) 344-1000 or 1-800-387-0750 (Ontario) or 1-800-387-5540 (Canada)
Fax: (416) 344-4684 TTY: 1-800-387-0050
Website: www.wsib.ca

 

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What about driving and employment?

Where driving is concerned, it is important to distinguish between having epilepsy and having seizures. A person with fully-controlled epilepsy who is taking anti-epileptic medication and seizure-free for 12 months is legally entitled to drive in Ontario. A person who is fully compliant with medical treatment but experiencing seizures is not. The sole exception to the latter involves a consistent 5-year pattern of nocturnal-only seizures.

When hiring, an employer cannot discriminate against a person with epilepsy whose license has been medically suspended, unless driving is an essential component of the job. The burden of proof lies with the employer to prove that a driver’s license is necessary, rather than just desirable. When a medical license suspension occurs for a current employee, the employer must make every reasonable effort to re-structure the job or re-arrange staff so that the worker retains his or her job at the same pay. Again, “undue hardship” as defined under the Ontario Human Rights Code is the only legal reason for not doing so.

Commercial driving is treated somewhat differently. Re-instatement of this category of license requires completion of a medical form and likely a neurologist’s report. Also the seizure-free period is 5 years, in accordance with Canadian Medical Association guidelines.

 

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What can I do if I experience discrimination in the workplace?

The Ontario Human Rights Code specifically lists epilepsy as a handicap that you must not be discriminated against for having. Employers, then, must base policies and decisions concerning hiring, promotion, demotion or dismissal on the applicant’s or employee’s abilities without regard to their epilepsy.

Anyone who believes they have experienced discrimination or harassment on the job or been denied work because of their epilepsy has a legal right to complain to the Ontario Human Rights Commission. An appropriate investigation will then ensue.

Ontario Human Rights Commission
180 Dundas St. West, 7th Floor
Toronto, ON M7A 2R9
Tel: (416) 314-4500 or 1-800-387-9080
TTY: 1-800-309-1129
Fax: (416) 314-4533
Website: www.ohrc.on.ca

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