Our Society Blog Blog Description en-us Tue, 07 Aug 07 21:42:00 UT Tue, 07 Aug 07 21:42:00 UT http://blogs.law.harvard.edu/tech/rss Marqui 4.9 Davinder Dhillon System Administrator A Story About Living with Epilepsyhttp://www.bcepilepsy.com/blog/a-story-about-living-with-epilepsy.aspx
The Life of Jim Walker: Living with Epilepsy, ADHD and Dyslexia

"I was born with a malignant tumour on the left side of my brain, which controls the right side of my body. The tumour caused grand mal epileptic seizures as often as four or five times a day. I would pass out during these seizures, and when I regained consciousness, the whole right side of my body would be paralyzed and completely numb, and I would be unable to talk. If I did try to talk, it would come out as a meaningless mumble. The paralysis and numb feeling would last approximately one hour, during which time I would often hit my right side--mostly my right arm--with my left fist, to try to return it to normal. I couldn't understand the numbness, or why nothing on the right side of my body would work. The doctors at that time figured I might have four years to live if I survived the seizures, or didn’t choke on my tongue. I also spent time in the Toronto Sick Children’s Hospital where experimental drugs were used on me, with more needles than I could ever count in a lifetime. Apparently, I also spent time in Rochester, New York for the same reasons."

"When I grew older and started school, I had a dog that was always with me, even in the classroom. If I had a seizure, the dog stayed right with me until someone helped me home, or until I was able to get home myself. Often, I would have a seizure on the road, and as the roads had only gravel surfaces back then, I would get quite scratched up. At that age, I was probably having one or two seizures every day at school."

"Whenever I had a seizure at school, the teacher would try to keep me from swallowing my tongue by forcing a spoon or ruler into my mouth. This probably did more damage than good."

"I would be bruised most of the time from hitting myself with my left fist, and one time the teacher thought I was being abused and called Children’s Aid. They sent someone out to visit my parents about the bruises. Mom and Dad had to explain what I would do to myself, and how upset I would get."

"As I grew older, the tumour grew with me. I was often by myself, as nobody wanted to chum around with a “fit-taker,” or “Hey, stupid,” as I was called at school. I can remember telling Mom that I just wanted to be like the other kids. Mom tried to explain that I was not the same as they were--that I had problems and was limited as to what I could do, but I could never accept that."

"By the time I was eleven or twelve, I only had three or four seizures a day, and when I came out of a seizure, my right side would no longer be numb and paralyzed. At this age, I had two friends, Ronnie and Leslie, who I used to hang out with. Because of my ADHD, and the fact that I was determined to have as normal a childhood as possible in spite of my physical problems, the three of us pulled some rather harum-scarum stunts, and got ourselves into trouble quite a few times doing this. One of the things we used to do was hop on a slow-moving freight train, run along the top of the boxcars up to the engine, and stick our tongues out at the engineer. Then we’d run back a couple of boxcars, and jump off. "

"We really didn’t have a care in the world during those days. I don’t know how many times friends saved my life after one of my seizures. There were always people around to help if I need it. I remember the time Dad, his friend Bill, and I went out fishing in Dad’s 12-foot aluminum boat. I had another seizure and fell into the lake. I guess I was the biggest fish that was ever pulled into the boat."

"Because of my general physical impairments, it was virtually impossible for me to obtain long-term employment. My chum Ronnie, who worked for the Department of Highways, once got me a job as a roman on a survey crew. This was fine until I had a seizure in the middle of the road and almost got hit by a transport truck. The survey crew ran to try to save me, but the truck managed to stop just feet away from me. That was the end of that job."

"About this time, I met a fellow by the name of Donny Jack, and he and I became good friends. So, when I was drunk one time, I told him all my problems. I told him I had to leave the town--it was just too upsetting for both the kids and me. Roberta, especially, was blaming herself for the family problems. So Donny and I decided to go to Toronto-which we did, using our thumbs. There, I was hospitalized again because of a seizure. I was put back on Phenobarbital and Dilantin, which I had been on as long as I could remember. One reason, of course, that I was having seizures was that I was not taking my medications regularly."

"At any rate, after Donny and I split up, I heard of an organization called Crippled Civilians (now called “Goodwill”), where people with all sorts of disabilities can work regular hours and get paid. I managed to find a job there as an elevator operator, and there I met a girl by the name of Geraldine. She was working in the store, distributing and putting price tags on goods received. We started dating about a year later. By the time we decided to get married, I was working at People Credit Jewellers. While working there, I made Geraldine’s engagement ring and wedding band. After getting married in 1969, we moved into a one-bedroom apartment on Jarvis and Dundas Street. Geraldine was a great help to me because she could take care of me whenever I had a seizure--which still happened too often."

"Soon after we were married, Geraldine took driving lessons, and then got her drivers license. I decided I would like to get my drivers license, as well. So about two years later, I found a Doctor to whom I stretched the truth a bit, saying I hadn’t had a seizure for two years, and he filled out the necessary forms, and I did get my drivers license. Shortly after, in 1971, I bought a blue, second-hand Ford Comet. But one day-still trying to be a normal person--I was going to pick up my wife and son, when I had a seizure while driving. Two off-duty cops saw, right through the back window of a taxi they were in, that I was having a seizure. They rushed over and shut the motor of my car off for me. They checked , of course, and I had my driver’s license with me, but one of them drove my car into a parking lot. I called Geraldine to come and drive me, and the car, home. After that, she did all the driving."

"When my wife, Robert and Kenneth and I got back to Toronto, I went almost straight into the Hospital. A lot more tests were done to try and figure out if my malignant tumor, which was about the size of a walnut, could be removed. The doctors came in to talk to my wife and I, and gave us a choice. The tumor could be removed but the operation was very dangerous: it could kill me, paralyze me, or I could become a vegetable."

"At the time, my son Kenneth was about five months old, and I was fed up with my frequent seizures. I decided that I wanted to tumor removed. We got in touch with my family and told them about the upcoming operation. Annette, the caseworker at Browndale Homes brought my son Norman. Mom, Dad, my brothers and their wives all came to Toronto, not knowing if they would ever see me again, or what to expect."

"Because the doctors needed information from me during the procedure, I had to be awake while the operation took place. This started out with the surgeon removing a couple of pieces of my skull. But the he must have touched a nerve, for I lost my speech, and my right side was paralyzed for a few seconds. The Doctor looked me square in the eyes and I heard him say, “He’s stopped breathing.” Next, I saw nothing but white clouds, and then I was looking down at the doctors. The next day, I woke up in Intensive Care, Knowing who I was, and able to recognize Geraldine and the family. But my face was so swollen that my eyes were almost closed."

"In 2004, I was talking to John, a friend of mine who was a member of the Lions Club, and he told me about the possibility of me getting a Seizure Alert dog, and asked if I would be interested. We thought it was a great idea, so we made out the application forms and sent them in. Our application was tentatively approved, so Gloria, the dog trainer, who was with Dog Guides Canada in Oakville, Ontario, came out to talk with us and check everything out. She was satisfied with what she saw and told us we would be hearing from them. Apparently Seizure alert dogs cost about $20,000.00 to train from the time they are born; so the Lions Club kicked in $10,000.00 for a dog for me."

"Six months later we heard from Gloria, who told us she had a chocolate Lab named Wink for us. Gloria and Wink came to Kelowna by plane, where we picked them up and brought them to Salmon Arm. Gloria stayed at the Holiday Inn and Wink stayed at our home with us. Gloria came over every day to train Geraldine and I. Then we started taking Wink on walks and to the mall. Everything seemed to be going well, so after about a week, Gloria went back to Oakville. However, about two months later, Wink began to chase after people on bikes or skateboards. Then she went after a puppy that came up behind me, pulling me down onto the sidewalk, where I nearly hit my head on the concrete. Consequently, it was decided that Wink was not the dog for me, so Dog Guides Canada sent tickets for Geraldine, Wink and I to fly to Oakville, where Wink was adopted out to a farm family."

"Geraldine and I stayed right at the Centre for a week of training. I was given a black Lab named Flair that stayed with us while we were there. Gloria taught me to command Flair to come, sit, stay, get the phone, open and close the fridge, and open doors for the handicapped. If I moaned or started to shake she would bark, thinking I was having a seizure."

"We had a party after our week was up. The foster parents were there to say goodbye to Flair, Geraldine and me. We then left for Toronto to see Geraldine’s mother and sister, then flew back home. There, I had to train Flair to bark four times, then go and pull on Geraldine’s sweater for help. Geraldine can even be in bed and Flair will pull the blankets off her so she will come and take care of me. And I can hide either of the phones-cell or cordless-in any room of the house, even under my pillow in the bedroom, and Flair will find it and bring it to me."

"Things are slowly getting a bit more difficult for me. In 2011, my doctor insisted that I use a scooter to get around on the sidewalks with; I was breaking too many bones. For about the last three years, the muscles behind my knees have been suddenly quitting on me-particularly on my right leg, and I suddenly collapse without warning. This may be caused by osteoporosis or malfunctioning nerve endings from my back being broken. We just don’t know. So now, my dog Flair gets her exercise every day, running along beside me when I’m out with the scooter, but I’m worried that my legs aren’t getting any exercise. I haven’t had any seizures for over two and a half years now, but I was recently diagnosed with Alzheimer’s, so I thought if I was going to share my biography with anyone, I better do it now. It’s quite amazing, actually, that I’m still on the green side of the grass. I’ve been living on “borrowed time” for longer than any doctor believed I would. If I died tomorrow, I would have no regrets, except for the sorrow I may have caused a few people."]]>Tue, 15 Nov 11 20:15:00 UT10 Things Every Teacher Needs to Know About Epilepsy and Seizureshttp://www.bcepilepsy.com/blog/10-things-every-teacher-needs-to-know-about-epilepsy-and-seizures.aspx
  • Seizures are common. About 1 out of 12 people will have at least one seizure in their lifetime. Epilepsy, a condition that involves recurring seizures affects about 1 out of 100 individuals (approximately 40,000 people in BC) and is most prevalent in children and those with special needs.
     
  • There are many different types of seizures. The most common type in children under the age of 12 are absence seizures. These are so brief and subtle they may easily be missed. Careful observation, recording, and reporting of any potential episodes is essential.
     
  • People having an epileptic seizure cannot swallow their tongue, stop a seizure by themselves, and/or intentionally provoke them. People with epilepsy have seizures that are due to a temporary, abnormally excessive burst of electrical activity in the brain. They usually happen without warning and without a specific trigger. 
     
  • Each child with epilepsy is unique. Therefore, make sure the information that you have and understand is specific to the child. This should come from their parents and their healthcare professionals.
       
  • Seizures are just one part of having epilepsy. About 30% of children with epilepsy also have learning difficulties. These can vary in severity and the types of skills that may be affected. A specialized learning assessment is usually required to specify what cognitive functions are affected and how to best assist the student in the classroom.
     
  • Children with epilepsy do not want to be treated differently than other kids. Even in students with severe and frequent seizures, it is important to integrate them into all activities as much as possible.
       
  • Many famous people throughout past and present have had epilepsy or been believed to do so. This includes Roman leader Julius Caesar, actor Danny Glover, Olympic hockey goalie Chanda Gunn, poet Emily Dickenson, rapper Ad Rock, and Isabella “Kelly” Falk, a contestant on America’s Top Model. 
     
  • Responding to a seizure in a calm, professional, reassuring, and empathetic manner will help ensure that other students to do the same. Educating the other students about epilepsy is essential to ensure that the student has support from their classmates and to lessen the chance of social isolation or bullying.
     
  • It’s not just about the diagnosis, it’s about the child. Focus on the child’s strengths and abilities, teach skills that foster self-development, self-esteem, and which challenge and stimulate them to maximize academic and social development.
     
  • You can make a big difference in improving the lives of children with epilepsy and their families. Your efforts are appreciated and valued by the millions of people affected by epilepsy throughout the world.

    • The BC Epilepsy Society has services and resources to assist you. This includes free information materials, educational workshops, and classroom resource kits. Age-appropriate workshops are also available for students. For more information, please contact Elvira Balakshin at 604-875-6704 or at outreach@bcepilepsy.com

    ]]>    Fri, 02 Sep 11 18:30:00 UT    Epilepsy Related Applications for Smartphoneshttp://www.bcepilepsy.com/blog/epilepsy-related-applications-for-smartphones.aspxWhat is a Smartphone?

    A smartphone integrates basic cell phone functions with an operating system similar to a personal hand-held computer. The device can access the internet, store data, take pictures, offer GPS navigation, play audio and visual media, and provide a variety of entertainment features. Smartphones can also be referred to as a PDA (personal digital assistant).

    There are different types of smartphones. The most popular continues to be the iPhone produced by Apple Inc. However, there are others that are gaining in popularity. This includes the BlackBerry, and Google's Android Operating System for HTC, Samsung and LG mobile phone manufacturers.

    In 2010 over five million Canadians used a smartphone, and demand for the smartphone continues to grow. The majority of smartphone users are between the age of 25 and 34.  However, ages 35 to 44 and 18 to 24 are very active users as well.

    What is a Smartphone Application (app)?

    Smartphones use applications (apps) to personalize and increase a phone’s functions. These mobile device software programs allow you to search, shop, game and multitask a variety of functions from your smartphone. Currently there are over 600,000 apps available for purchase or free of charge for various smartphones.

    Recently, there have been some applications developed specifically to assist people with epilepsy and their caregivers. Below are some examples:


    My Epilepsy Diary

    This free application was created by the Epilepsy Therapy Project for Apple products, however, the product will be available for other mobile carriers in the near future. The electronic diary is a comprehensive data-gathering and reporting tool. It tracks medications and their dosages as well as offers email and text reminders to take medication. The application also keeps a detailed profile of the user, and can document non-epilepsy specific details.




    Seizure Tracker

    This free smartphone application was developed by a parent of a child with epilepsy. The program gives patients the opportunity to log and track seizure activity, make appointments and follow a medication schedule. The data is compiled into customized reports which include graphs for doctors and patients to assess.




    Seizure Disorder Coach

    This free application for iPhone provides step-by-step emergency seizure assistance for those with "little to no knowledge of seizures." It also differentiates itself from other first aid material by giving personalized directions based on yes and no questions. While also offering an emergency intake questionnaire to prepare quality documentation for EMTs and lists the nearest ER location using Google Maps.




    When should you be cautious about applications?

    There are many medical assistance applications available on the market today. However, be cautious with products that have a high fee and/or have no reviews or independent assessments. As well, even though there are a few smartphone applications that claim to predict seizures or recognize them, be aware that there are major limitations and criticisms about the viability of these.

    Using a Smartphone Seizure Recording App – A Real Life Story

    I upgraded my cell phone to an iPhone in April of this year. I am not a very tech savvy person, but with the assistance of a friend and the sales rep from the Mac Store I was able to quickly figure out the basics.

    One of the first apps I downloaded was Seizure Tracker. I had heard about it previously and thought it would be useful for me. I have multiple seizure types. The majority are what I call “little” seizures or “jerks”. I’ve always had difficulties keeping track of these seizures even though they occur frequently. I’d write them down on different scraps of paper which would invariability get lost, or tell myself that I’d write them in my day planner later, but would forget about it.

    Since I’ve started using this tracking system on my phone, I’ve finally been able to keep an accurate record of my “little” seizures.  As well, it helps me remember the dosages of my medications.

    This app is also great in that it graphs your information by month, time of day, seizure type, medication history, etc. You can also type in more information when you record seizures in the calendar. Such as what you were doing at that time, how much sleep you got the previous night, changes in meds, etc. You can then email this information to yourself and print it out.

    Because of this I’ve realized that I often tended to miscount my little seizures, either way too low or way too high. I also didn’t realize that the majority happened between 5-8 pm.

    When I had my next appointment with my neurologist I was able to accurately tell him how many seizures I had in the last two months. As well, the time of day they were most likely to occur. This resulted in a change in medication. So far, this increase in my medication seems to be decreasing the amount of “little” seizures I have – I keep crossing my fingers that it will continue to do so!

    This may not be useful for everyone, but if you have a smartphone, it’s definitely worth checking it out. I found it much easier and accurate than using the old pen and paper method.    ]]>    Wed, 27 Jul 11 21:45:00 UT    BC Epilepsy Society Scholarship Winners Announcedhttp://www.bcepilepsy.com/blog/bc-epilepsy-society-scholarship-winners-announced.aspx

    The BC Epilepsy Society is proud to announce that we have rewarded eight $1000 scholarships to people with epilepsy living throughout the province.

    Our scholarship program is designed to assist people with epilepsy access post-secondary education and employment training. This will help improve the quality of life for people with epilepsy and their families.

    The 2011 scholarship winners ranged in age from 18 to 42, and will be entering or continuing post-secondary studies in a range of fields. This includes environmental science, film, nursing, interior decorating, visual arts, medical research in epilepsy epidemiology, and other arts and science programs.

    Here’s what some of the scholarship winners had to say about their experiences living with epilepsy along with their ideas for raising epilepsy awareness:

    “I was ten years old when I was first diagnosed with Juvenile Absence Epilepsy. At times my seizure control was excellent and at times it was extremely poor. Sometimes I had side effects from my medication and sometimes I did not. Having epilepsy is difficult. However, I have benefited. Having epilepsy has made me work harder at everything I have done because I never wanted to let epilepsy slow me down or prevent me from doing anything. If anything, it made me want to achieve more than if I didn’t have epilepsy.”

    “My goal is to be able to communicate to teachers, students, friends and coworkers that many people in our community have epilepsy and the best way they can help is to continue to support and respect them. It is everyone who lives with epilepsy to be responsible, to be diligent with therapy, be supportive of others with epilepsy and to be part of the effort to raise awareness. Accept them for who they are, not define them for the condition they have.”

    “In the future, I will increase epilepsy awareness as a nurse. I have been accepted for September 2011 and can’t wait to get started. As a nurse, I will be surrounded by patients, and staff. I have the personal experience of what it feels like to wake up from a seizure and I can educate staff members of my own experiences and give them a deeper understanding, in contrast to straight out-of-the-textbook information."

    “I am not ashamed of my disability. In fact, I do not see it as a disability at all. To me, after years of living with Epilepsy I see it as a challenge and an opportunity. It is a challenge to make me work my hardest and make something of myself to prove that Epilepsy will not hold me back from reaching my full potential.”

    “So what can I do to raise awareness? I think the best way would be to start with my own attitude. I need to accept the fact that I have epilepsy. I need to be happy and positive. There may be some limitations to my activities for a while, but it is not the end of the world. If I have a positive attitude, I can show people that living with epilepsy is not only possible but perfectly normal. I can show people that I am a happy, healthy, well adjusted young person. I can work hard at whatever I put my hand to. I can continue volunteering with children to better their lives and give them worthwhile experiences. I can go to school and study to follow my dream, just like anyone else. I can be a useful part of my community and make a difference in the world.”

    For more information on the scholarship program from the BC Epilepsy Society, please contact us at 604-875-6704 or at info@bcepilepsy.com

    ]]>    Mon, 11 Jul 11 17:15:00 UT    Epilepsy Awareness Through Arthttp://www.bcepilepsy.com/blog/epilepsy-awareness-through-art.aspx
    This unique project was initiated by students as part of the Doctor, Patient and Society course from UBC. This course is part of the Faculty of Medicine curriculum to help educate future doctors about patient experiences.

    One of the students stated, “by bringing more of the arts into medicine, we hope to encourage a more holistic view of health care that is both inviting for the patients and inspiring for health care professionals.”

    The art piece is an abstract digital representation of what happens in the brain during an epileptic seizure. It incorporates the personal experience and understanding of the artist as well as, common depictions of seizures from people who have it. The inspiration came from her doctors explanation of what happens in the brain during a seizure.

    The students stated that their goal is, "to also inspire hope and optimism in those that view the artwork.”

    A copy of the artwork is below. You can also view the piece at the BC Epilepsy Society office and the Vancouver General Hospital Epilepsy Clinic.

    ]]>    Mon, 30 May 11 17:00:00 UT    Epilepsy is Awesomehttp://www.bcepilepsy.com/blog/epilepsy-is-awesome.aspx
    I started off the workshop by asking the class what words they thought of when they heard the word epilepsy. I received the usual responses – seizures, falling down, shaking, etc. However, then a child waved his hand in the air and said “awesomeness”. This was the child with epilepsy.

    During the workshop we talked about how our brain works, what a seizure is, what epilepsy is, and seizure first aid. As well, we covered the importance of recognizing and respecting the differences that we all have.

    About half-way through the presentation, this “awesome” child had a non-convulsive seizure. It was interesting to see what the children did, and in particular what they didn’t do. The children did not stare, laugh, or freak out. Some turned their heads to look at him, recognized that he was having seizure, saw that the teachers aide was helping him, and then turned their attention back to the workshop to learn more about epilepsy.

    Towards the end of the workshop I asked the children what they would want others to do if they had a seizure and how they think they would feel if they had a seizure. The child who had the seizure was fully aware by this time. Again he waved his hand in the air. He proudly said well, since I have epilepsy, I want to tell you about it. He described his seizures as being like a piece of mail getting mixed up at the post office and going to the wrong address.

    With his outgoing nature, hip haircut, and leather jacket, this child was awesome. You could tell he was the popular kid in his class even though he had frequent seizures and some learning difficulties.

    Kids with epilepsy want to be treated like everyone else; they don’t want to be singled out as being different. However, it is important to teach others to recognize that many people with epilepsy will need extra support, and it is important to know what type of support they need and want.

    By educating others about epilepsy we don’t just promote awareness; we give accurate facts about the condition (particularly about first aid) and practical information so that others can support people with epilepsy in their day-to-day life.

    To book a Partners in Teaching workshop for adults, children, or teens at a school, childcare centre, or for another audience, please contact the BC Epilepsy Society at 604-875-6704 or outreach@bcepilepsy.com]]>    Wed, 30 Mar 11 21:15:00 UT    Income Tax and Benefit Returns: Tips for People with Epilepsy and Their Familieshttp://www.bcepilepsy.com/blog/income-tax-and-benefit-returns-tips-for-people-with-epilepsy-and-their-families.aspxThe deadline for filing 2010 Income Tax and Benefit Returns is quickly approaching. The BC Epilepsy Society often gets questions regarding eligibilty for medical and disability benefits. To assist you, we've provided answers to some common questions about Federal Income Tax and Benefit Returns. These include:

    1. What can I claim as a medical expense?
    2. If I have epilepsy, do I qualify for the Disability Tax Credit?
    3. If my child has epilepsy, does she/he qualify for the Child Disability Benefit?
    4. Who is eligible for the Registered Disability Savings Plan (RDSP)?
    5. Where can I get help to complete my taxes?
    6. Who can I contact for more information about my tax return?

    1. What can I claim as a medical expense?

    You can claim the total eligible medical expenses you or your spouse or common-law partner paid for:

    • Yourself
    • Your spouse or common-law partner; or
    • Your or your spouse's or common-law partner's children born in 1992 or later and who depended on you for support
    • Your or your spouse's or common-law partner's child who was born in 1991 or earlier, or grandchild; or
    • Your or your spouse's or common-law partner's parent, grandparent, brother, sister, aunt, uncle, niece, or nephew who was a resident of Canada at any time in the year

    Along with prescribed medications, medical expenses you can claim include travel expenses for medical services, respite care expenses, homeopathic services, tutoring services, ambulance transport, and costs associated with seizure response dogs. Below is a list of medical expenses you can and cannot claim in your tax return.

    Expenses you can claim: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/ncm-tx/rtrn/cmpltng/ddctns/lns300-350/330/llwbl-eng.html
    Expenses you cannot claim: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/ncm-tx/rtrn/cmpltng/ddctns/lns300-350/330/ntllwbl-eng.html

    An authorized medical practitioner must prescribe expenses and original receipts must support claims. Eligible expenses must have been paid in the claim period and any reimbursements from insurance companies, work medical plans, etc. must be deducted from the amount claimed.

    For more information about medical expenses, read this Canadian Revenue Agency (CRA) webpage.

    2. If I have epilepsy, do I qualify for the Disability Tax Credit?

    The Disability Tax Credit (sometimes called the disability amount or DTC) is a non-refundable tax credit that reduces income tax payable for eligible individuals. To be eligible, you must meet all three of the following conditions:

    • You must have a severe impairment in physical or mental functions.
    • Your impairment must be prolonged, which means it has lasted or is expected to last for a continuous period of at least 12 months.
    • A qualified medical practitioner certifies that your impairment is severe and prolonged and completes Form T2201, the Disability Tax Credit Certificate, detailing the effects of the impairment applicable to the basic activities of daily living. A qualified medical practitioner can be a medical doctor, optometrist, audiologist, occupational therapist, physiotherapist, psychologist, or speech-language pathologist.

    Still not sure? Take this question and answer quiz.

    Generally, the Disability Tax Credit is usually given to people with frequent (at least a few times a month) debilitating complex-partial, tonic-clonic, or atonic seizures and/or people with epilepsy who also have other conditions that impair their daily activities (such as mental or physical disabilities). As such, not all people with epilepsy will meet the CRA eligibility for the Disability Tax Credit.

    People with epilepsy are unique in their medical condition(s) and needs. Many people with epilepsy do not define themselves as having a disability, but some may be eligible for the Disability Tax Credit, however others may define themselves as having a disability and receive other disability services and financial aid, but may not be applicable for the Disability Tax Credit.

    If you are eligible for this credit but are unable to use all or part of it because you have no taxable income – perhaps you did not work, or you earned a limited amount of money, you can transfer the credit it to your spouse, common-law partner, or other supporting person – so they will pay less or no income tax on their tax return.

    For more information about the Disability Tax Credit, read this Canadian Revenue Agency (CRA) webpage.

    3. If my child has epilepsy, does he/she qualify for the Child Disability Benefit?

    The Child Disability Benefit (CDB) is a tax-free benefit of up to $2,470 per year for families who care for a child under age 18 with a severe and prolonged impairment in physical or mental functions.

    To be eligible for the Child Disability Benefit (CDB), the child must first be approved to receive the Disability Tax Credit (see above) and the Canada Child Tax Benefit (CCTB). Not all children with medical conditions or disabilities are eligible for the child disability benefit. For example, children with Benign Rolandic Epilepsy (BREC) would not usually be eligible, unless the child also has a severe and prolonged physical or mental impairment. Children with only absence seizures are also not usually eligible.

    For more information about the Child Disability Benefit, read this Canadian Revenue Agency (CRA) webpage.

    4. Who is eligible for the Registered Disability Savings Plan (RDSP)

    The Registered Disability Savings Plan (RDSP) is a long term savings plan designed specifically for people with disabilities in Canada. This plan includes a government grant and bond (depending on income).

    To be eligible for the Registered Disability Savings Plan, you must be:

    • Eligible for the Disability Tax Credit, or Canada Child Tax Benefit if you have a child under the age of 19,
    • Have a social insurance number (SIN);
    • A resident in Canada at the time the plan is entered into; and
    • Under the age of 60
    Extensive information about the RDSP is available from the Planned Lifetime Advocacy Network (PLAN) website. You can also contact them by phone at: 604-439-9566.

    The CRA also has RDSP information is available on their website.

    5. Where can I get help with completing my taxes?

    The Community Volunteer Income Tax Program (CVITP) may be for you.

    The CRA trains volunteers who can help you complete your income tax and benefit return if your income is low and your tax situation is simple.

    Find a volunteer tax preparation clinic in your community here: http://www.cra-arc.gc.ca/tx/ndvdls/vlntr/clncs/bc-eng.html


    6. Who can I contact for more information about my tax return?

    Contact the Canada Revenue Agency (CRA) at 1-800-959-8281 or visit their website at www.cra-arc.gc.ca

    ]]>    Tue, 01 Feb 11 22:45:00 UT    The UN Convention on the Rights of Persons with Disabilities – What does it mean for Canadians?http://www.bcepilepsy.com/blog/the-un-convention-on-the-rights-of-persons-with-disabilities-what-does-it-mean-for-canadians.aspxCommunity Legal Assistance Society. This was held on December 10th, 2010, which is also the International Day of Human Rights.

    The forum was called Honouring the Convention: A Call to Action in BC. The goal was to form new strategies in order to make the UN Convention on the Rights of Persons with Disabilities a reality for people with disabilities in BC and across Canada.

    On March 11, 2010, Canada ratified the United Nations Convention on the Rights of People with Disabilities (CRPD), the newest international human rights treaty.

    Parties to the UN Convention are required to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

    Speakers at the forum were representatives from non-profit and government agencies who work with people with disabilities and in legal advocacy. The forum included sessions on: information on the Convention from a community perspective, the federal experience in negotiating and ratifying the Convention, the promise of the Convention for people with disabilities, the potential of the Convention articles, and strategies for using the Convention to promote real change.

    There are many Articles in the UN Convention that are particularly relevant for people with epilepsy. One that I’d like to highlight is the Article addressing the right to accessible and affordable healthcare services. The text of this article is below:

    Article 25 – Health

    States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:

    (a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

    (b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;

    (c) Provide these health services as close as possible to people’s own communities, including in rural areas;

    (d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

    (e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

    (f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

    These are essential for not just people with epilepsy, but for everyone in Canada. So, what is next? How do we put these in place in Canada?

    Speakers at the conference agreed that the Convention is an reputable and inclusive document on what needs to be done for people with disabilities. The consensus of the speakers was that government and social service organizations need to use it as a basis to create and enforce policy in Canada.

    There are approximately 4.4 million persons with disabilities in Canada - about 14.3 percent of the population. This number is expected to grow due to the aging of the population.

    Though Canada already a variety of federal, provincial, and community services and legal protections for people with disabilities, speakers highlighted that more needs to be done, particularly in access to health services. As well, it is important for Canada to also support and convince other nations for the need to enforce this Convention. In fact, representatives from the Canadian Association for Community Living were instrumental in helping to write and revise this UN Convention.

    I am proud that Canadians were such a force in developing this Convention. I am also very hopeful for the future of our country in being a leader for human rights for people with disabilities.

    More information:
    Transcription of PowerPoint slides from the community forum
    The Convention of the Human Rights of People with Disabilities 
    The United Nations Enable website]]>    Mon, 13 Dec 10 18:30:00 UT    GET SEIZURE SMART!http://www.bcepilepsy.com/blog/get-seizure-smart.aspxEpilepsy Foundation of America (EFA) has launched a nationwide campaign to make 1 million Americans seizure smart this month. “We need you to help us spread the word!" states Joseph LaMountain, the Director of Grassroots Advocacy at the EFA.

    It is estimated that 1 in 12 people will have a seizure in their lifetime. Approximately 1 in 100 people will then go on to develop recurring epileptic seizures. About 50 million people worldwide have epilepsy, 3 million in the US, and 300,000 in Canada.

    This November and during every month, let’s help our fellow Canadians GET SEIZURE SMART!

    Read the BC Epilepsy Society Information Sheets, Epilepsy Fact Sheet and Seizure Types and First Aid to make sure you know the facts. We also have Seizure First Aid posters and Seizure First Aid wallet cards to distribute. As well, be sure to watch our Public Service Announcement, “You Can’t Swallow Your Tongue During a Seizure!”

    Then take the Get Seizure Smart quiz to see how much you know.



    Do your part in the fight for epilepsy awareness by forwarding epilepsy resources and the Get Seizure Smart quiz to family, friends, colleagues, acquaintances, and even strangers. By spreading the word, we can raise understanding about epilepsy and to counteract fears and myths that could be associated with it.

    You can also purchase Get Seizure Smart adult and kids t-shirts, hats, bags, buttons, magnets, travel mugs, and a variety of other items from the Get Seizure Smart online store.

    If you would like to order epilepsy resources or book an educational workshop, please contact the BC Epilepsy Society at 604-875-6704 or at info@bcepilepsy.com]]>    Mon, 01 Nov 10 19:15:00 UT    Back to School Tips for Parents and Studentshttp://www.bcepilepsy.com/blog/back-to-school-tips-for-parents-and-students.aspxEpilepsy Foundation eCommunities social networking site, parents exchanged advice and tips on how to make the transition back to school go as smoothly as possible. Below are some of their tips from the "Parents Helping Parents" forum and as well as, feedback from post-secondary students.

    "My son is going to middle school this year. Assemble a team—special education teacher, physical education teacher, regular teachers—and make sure you, as a parent, have a go-to person at the school who knows what is what."

    "This will be my daughter's first year starting back to school with epilepsy. She was diagnosed last year after school had already started. Even though the nurse and staff are aware of her seizures, I am going to be sure to go over everything with them again and meet with her new teacher beforehand to make her aware of what warning signs she should be looking for. I will also make sure my daughter remembers that she must tell someone if she thinks she has a seizure coming on."

    "Since Joey requires a lot of sleep we always make sure to start the school bedtime routine about a week before school starts. We will put him to bed earlier so that he will wake up earlier. Although it isn't easy to end the fun late night summers early, we try everything to avoid him starting a new school year complaining about being tired."

    "I would strongly encourage any post-secondary student with epilepsy to visit the Disability Services/Office at your school. I don't consider my epilepsy to be a "disability" or call myself "disabled", but looking back on my university days I should have met with an advisor at the beginning of the school year and told them I have epilepsy, so if something came up and I needed accommodation for writing a test or paper, then they would already have a file/record of me from Disability Services."

    "Provide the school with a brief description of your child's seizures, a plan of action after the seizure ( does your child need to nap after, resume normal class activity, go home, call 911). Can your child alert staff if a seizure is coming on or has occurred? Are there medication side effects that will interfere with school, how and when? (update and replace this sheet as needed to all appropriate staff)"

    "My son was diagnosed with E in December 09. He starts preschool this year. I have met with his assistant principal, brought in his sz plan well in advance of the beginning of the school year, and ordered my son's favorite book about epilepsy to donate to the classroom library. I am now trying to arrange a training on the administration of Diastat and basic info about epilepsy for the staff."

    "I was diagnosed with epilepsy when I was 19. I was in my first semester of college, but didn't tell anyone at school about my seizures. I now realize this was a mistake. I had a tonic-clonic (grand mal) seizure in one of my classes and I felt really bad that I didn't tell the teacher ahead of time. Even though I felt embarrassed going to the next class, everyone was cool about it, no one acted any differently and my teacher acted like it was no big deal – just what I wanted her to do! None the less, at the beginning of the semester tell yr teachers that you have epilepsy and tell them what to do if a seizure happens."

    "Do not allow staff to treat seizures as less than they are, or more than they are (by this statement I mean that seizures can impact many areas of the child's life including learning.) Teachers need to be aware that the medications can have a big effect on learning and stress of a chronic disorder also causes additional stress on the student and siblings. However, this student has the right to the full academic environment with as little restrictions as possible. Children with epilepsy should not be restricted any more than children with asthma, diabetes, cancer, or other conditions."

    Helpful Resources from the BC Epilepsy Society:

    School and Parent Partnerships Information Sheet 
    - Gives practical advice on advocacy and communication with school personnel, as well as an overview of school support services in BC.

    Understanding Students with Epilepsy: Tips for Teachers Information Sheet 
    - Describes impacts of seizures on learning and gives suggestions on how to support children with epilepsy in the classroom.

    Epilepsy and Seizure Information for Schools DVD
    - Explains facts about seizures and epilepsy, recognizing seizures and first aid, learning difficulties and teaching strategies to assist those with epilepsy.

    Partners in Teaching Program
    - Provides free seizure awareness workshops for teachers and students.

    Partners in Teaching Classroom Resource Kits
    - Resources to teach kids and teens about epilepsy and seizures

    BC Epilepsy Society Scholarships
    - provides eight $1000 scholarships to individuals entering or continuing in a post-secondary program

    If you have questions or require further information, please contact our office at 604-875-6704 or at info@bcepilepsy.com
    ]]>    Thu, 26 Aug 10 19:45:00 UT