PERSONAL
GLIMPSES
In which personal stories are shared, describing life with epilepsy, recognizing, experiencing and overcoming challenges.
Dale's Story
A successful operation changed my life forever.
I had a difficult birth which caused me to have epilepsy. July 1987 was when my life took a turn for the better. I was working at IPSCO from August 1977 to July 1987 when my epilepsy seizures became worse than when I started at IPSCO. In July 1987 I was working at IPSCO Steel Stores when I was put on long-term disability. I tried several new medications but nothing would control my complex partial epilepsy seizures after nine months of trying different medications. My neurologist, Dr. F. Veloso told me I had exhausted all the medications that could control my seizures.
As a last resort, I was sent to Royal University Hospital in Saskatoon to talk to Dr. M. B. M. Sundaram, a neurologist that Dr. Veloso referred me to in April 1988. In April my family and I talked to the neurologist to see if I was a candidate for surgery. In June 1988, I went back to Royal University Hospital for about a week where they weaned me off medications and watched to see what type of seizure I was having and what I was saying. The information was gathered in about four days. I was put back on my medications and went home after a week. My neurologist said in my case Dilantin and Tegretol were attacking each other inside of me.
It would be the equivalent of not taking either medication at all. I discontinued the Tegretol and kept on taking Primidone and Dilantin. In August 1988 I went back up to Royal University Hospital and had a “wada” test. It is a dye that is injected into the groin and travels up to the brain and highlights the troubled area. The scar tissue which was causing the seizure was in the right temporal lobe. The speech box is 99.9% of the time located in the left temporal lobe. I would be unconscious through an epilepsy operation. I was told the scar tissue was in a good place to be taken out. I was told that there was an 85% chance of being seizure-free. Dr. Robert Griebel was the neurosurgeon who performed the surgery on November 28, 1988. I went back to work in May 1989. I retired after 40 years on August 31, 2017, working at EVRAZ, formerly IPSCO. I also obtained my driver's license.
I celebrated thirty-one years of being seizure-free November 28, 2019. - Dale Oram
Darlene's Story
60 YEARS!
At the age of six months, I developed a high fever and was taken to the same local hospital . I became hospitalized, supervised by staff, especially the head nurse who made sure I was well looked after. After four days in the hospital, my fever broke. It was not long after, I was diagnosed with frontal temporal lobe epilepsy, complex partial seizures. My fever caused the condition.
I had to start taking anticonvulsants to control my epilepsy. As a young child, I did not pay attention to the detail as much as my parents had to ensure my health was looked after. I recall Phenobarbital as being one of the first medications I was on.
In public school, Grade 4, math and spelling were my top subjects. Every time we had a spelling test and all words were spelt correctly, you would receive a gold star by your name, I was top notch. I recall one spelling test I, I had a seizure, my writing got messier, bigger, and words possibly spelt wrong or missed. I was sad that I did not get the gold star, the first one I missed in Grade 4. My teacher asked my mother what the problem was,she explained epilepsy.
I was held back from swimming lessons. While in the Wading Pool I had a seizure. My mother carried me out of the water, . Dad owned land with a dam. Older farm boys, neighbors of ours, always wanted to go swimming there. We could tag along if supervised. I took a tire tube to float on. The tube flipped in the water, my feet landed below with water above my head. I walked out and could see my shadow through the water, okay though.
In High School in the next town, other students learned about my condition and some commented to me, “When are you going to have a Fit next”? I felt alone. I became involved in softball, curled and entered local 4-H. In my first 4-H class I sewed an apron; I entered and displayed it at the local fair. When I went to view the apron, it had a red ribbon attached, first place.
Saskatchewan Government Insurance orders are not to obtain a license if you have epilepsy seizures. Though living on a farm I did learn quickly. i always had an aura if seizure was to occur, enough to stop any process. I still had seizures monthly.
Due to teasing in school, including Grade 12 (where I ended up short one Credit), I decided not to go through the Graduation process. My parents backed my choice. I still received graduation gifts. My parents would treat me the same as if I went through the Graduation process.
By this time I again changed my medications. My family convinced me I could work. Seeing others with other medical problems worse off than me, gave me more self-esteem. I treceived a Wood River Home Care pin. I worked various jobs for nine years assisting those with other conditions; elderly, ALS, MS, Polio, Rheumatoid Arthritis and paralysis patients, etc. These jobs were limited as their health conditions became worse and clients had to be moved. (Ironically one of these clients was the parent of the Head Nurse who watched over me when I had the high fever at 6 months old. Another patient was the mother of the lady who instructed my Home Care course).
I moved to Regina. I could not drive, all amenities were there. I still had complex partial seizures but did not let them get in my way to work. My seizures usually occurred around same time monthly. I attended Micro Computer Business Applications at CompuCollege and Graduated. I later contacted the Saskatchewan Department of Education and finalized my Grade 12. Last but not least, I took it upon myself to sign up at the YWCA and took Adult Swimming, passing the class. Missions were accomplished. I felt proud. Now I needed employment, my sister convinced me I was able.
I was advised an Epilepsy Organization existed in Regina. I contacted them and found out they held support group meetings monthly; I thought to attend and listen in. At the first support meeting I attended, I listened and met others with epilepsy. Seizures did occur at the meeting. During my seizures, I would gape, pick at my clothes, or lip smack. I did not lose consciousness or fall; I could see everyone but not speak properly. A lady stopped me walking on the street when she saw something was wrong and tried to assist me. Strength increased during my seizure. Another time, I was about to cross a busy street. Just as the light turned green to walk, I was going into a seizure. My conscience told me not to walk. I stayed on the same corner until I was okay.
I went to Canada Manpower looking for work. A Lawyer was looking for an office clerk. I was called for an interview.. A day later I had a full-time job. The lawyer was not concerned about me having epilepsy at work. He had a good understanding of the condition. He later moved to another city. After losing employment, the lawyer and his wife still maintained a life friendship with me. They become important contacts, helping Epilepsy Regina before it closed and assisted Saskatchewan Epilepsy Inc. as Board Members.
I continued to attend Epilepsy Regina support group meetings. Word of Operations for epilepsy was emerging. An Operation was not suggested to me. I was lucky and obtained a job with full-time hours.By this time I met a member who was going to travel to Saskatoon for an epilepsy operation. We became close. It can be a scary thought but members from the organization were travelling to cities and obtaining successful operations. Doctors are recommending operations to this day.
I would hang out around the Epilepsy Regina office for coffee. I started to run bingos, later worked for Epilepsy Regina, Members with epilepsy would come and go. You would hear happenings. Some found full-time jobs. One member boiled a poked egg and had a seizure. She put the boiled egg in the fridge with a Band-Aid on it. I have heard of other unusual events occurring during seizures. Members could not remember what occurred, friends and family had to explain.
A local job fair was being held for people with disabilities. There was one table in particular; they said their company was having informational interviews. I made an appointment and an interview held. The Staffing and Selection representative found out she knew a person from my high school, who she could reach out to. In less than a week while working bingo I received a phone call from the Staffing and Selection representative, “Will you take up a three-week job?” I said yes. I told the company ahead of work I had epilepsy and explained my seizures. I had auras, enough time to secure myself from danger before a complex partial would occur.
In 2004 Epilepsy Regina had to close its doors. The founder passed away also.. Members were sad to see it close. I was one of a few Co-Founders who helped start Saskatchewan Epilepsy Inc. in 2005, with more services and a strong board. All on a volunteer basis, people emerged wanting to help. Especially those who have had successful epilepsy treatments.
Over the years I saw the same Neurologist until his retirement. Now I have changed to two anticonvulsant medications to control my seizures. Every epilepsy case has to be diagnosed and treated in its own manner. I am more alert on my current medications, happier.
I had worked fulltime at the same company for 29 years. During those years I obtained my Certificate in Business Administration from the University of Regina, graduating in 2004. I fought to maintain my job showing determination and willingness to work. Employment Equity must be 5% of the workforce now. It is said that those with a disability tend to work harder and have less sick days to prove they are capable of working.
I am now retired and enjoying it. Quote is “you are a person, with epilepsy second.” Epilepsy doesn't have to stop you from enjoying your life and wishing to find success. You can succeed in many areas by believing in yourself. Support is out there.
- Darlene Achter
Paula's Story
Why the "HUSH HUSH"?
At one time, some of us were never sure what, or if, we should tell people about our epilepsy. When growing up, I was told that ‘we don’t need to tell people that we have epilepsy’ (a fear of the unknown). This made it difficult if friends asked why I took the pills that I took. And if they did ask what epilepsy was, I didn’t know how to answer, as it was something we never talked about. I didn’t have a clue what the pills and epilepsy were all about. I often heard things about people having arthritis or diabetes, but epilepsy was one of those things you just didn’t talk about.
Here are a couple of things that I experienced as I was beginning to realize that it actually felt better if I wasn’t afraid to talk about it.
FRIENDS
I spent my childhood not talking about epilepsy, as it was something that I was told that I was not to discuss with other people. The few people that knew I had epilepsy would never ask any questions about it.
When I had a couple of seizures at work, some people would question what happened, but when told that it was epilepsy, the conversation was dropped. Until one day, Marjorie, one of my co-workers began asking me about it in the lunchroom. Her daughter, Leigha, had had a couple of seizures and Marjorie was asking for any information that she could get. I guess that she felt that I would be the logical person to ask. I was surprised and a little shocked at first that anyone would ask, but found that I was more than happy to answer any questions that Marjorie had and told her about the feelings that came with the seizures. After the conversation, I walked away feeling better, just because I had found someone whom I could talk to without making them feel uncomfortable. However, Marjorie approached me later that day to apologize. She said that the other ladies in the lunchroom told her that if someone has epilepsy, they should not be asked about it. They were sure that Marjorie had been rude asking questions and had embarrassed me. When I heard this, I was shocked. I knew that it felt better to have someone that would listen to me and give me support. In fact, it was a breath of fresh air and a relief to know that I didn’t lose friends when I told them I had epilepsy. Marjorie and her daughter, Leigha, became two very good friends of mine!
FAMILY
I was 46 years old. I had had epilepsy for as long as my mind could reach back, and had taken more kinds of medications than I could remember.
It had reached the point where my neurologist felt that there were no other medications that he could prescribe and that surgery was the only thing that might help. After much worry and fretting and debating with myself about the idea, and what MIGHT happen if I had surgery, I decided to go ahead with it. I was sooo happy when I came out of it with my memory intact!
Just one month later I went to a family reunion, where I seemed to be the star of the show because of the success of my surgery. But I had promised myself that there was one cousin in particular whom I needed to speak to. He too has epilepsy. I could remember that as children we had never been encouraged to talk about the ‘problem’, but this time I wanted to ask Dennis if he still had epilepsy and if it was under control. The surprise came when HE approached ME and said ‘I WANT TO TALK TO YOU, TOO!’ I quickly replied ‘WELL, I WANT TO TALK TO YOU, TOO!!’. That evening we had a long conversation about things that had happened in the past. Even other cousins sat in on the conversation and listened.
But I had one thing up my sleeve to surprise Dennis. I keep family records and genealogical facts and at every reunion have a ‘Family Facts Quiz’. This time, one of my questions for the group was ‘How many people in this family have epilepsy?’ I was surprised to hear a lot of voices calling back ‘one’ and ‘Just you, Paula’. It shocked a lot of people when I answered that Dennis also has epilepsy. But looking at Dennis, I could see a strange look on his face and wondered if I had made a mistake by putting in this question ... letting others know about his ‘secret’. Once done with the quiz, I immediately sat down with him to ask if I shouldn’t have mentioned that he too had epilepsy. Close to tears, Dennis said ‘No, of course not! Wrong!! It feels so good to know that we don’t have to hide it from anyone’.
I have been seizure-free since 2006 and always look forward to more reunions and connecting again with Dennis. Long talks are awesome!
Thanks, Dennis and also a special thanks to Dale and Darlene, the people who were the ones who got Saskatchewan Epilepsy Inc. on its feet and were there for me when I needed someone to talk to.
- Paula Boyczuk-Green
Carla's Story
My journey with Epilepsy.
Although I didn’t know until I reached my 20s, my journey with epilepsy began when I was 18 months old. I had an extreme fever that caused a seizure, and since I was still so young, it damaged a portion of my developing brain. When I was that young, we didn’t see any signs that it had any long-term effects, and I grew up not even knowing that such a strange thing had ever happened. The feelings I was used to when I was growing up were normal for me, so I assumed everyone felt the way I did.
I would have occasional moments of panic and feel like my body was frozen but it would go away quickly, I thought that was what deja vu meant! Since I come from a family with a history of Ehlers Danlos Syndrome, I would sometimes have dislocations, sometimes fall and shake, so that also made my small seizures easy to miss. As far as my small town knew, I was just an awkward, uncoordinated tomboy who dislocated things and really liked singing.
When I graduated from my small town I went on to study music at Brandon University. While there, I enjoyed taking on projects of non-profit organizing, so I redirected my goals and was accepted to the Odette School of Business at the University of Windsor. I cheerfully settled in to work on my MBA while focusing on non-profit administration.
I had just finished a third of my classes, and started a work placement program, when I had a grand mal at my new job. Within a month I had another one, and was quickly sent to specialists who finally diagnosed my epilepsy. We spent 2 years trying different combinations of medications, but nothing seemed to manage my seizure types, so I was sent to London Health Sciences Centre for testing to see if a surgery might be a better option.
In Ontario, the telemetry experience was incredible. For the first time, I met other people who were as confused with their bodies as I was. They had memories like mine, and we could laugh about how seizures had put us in strange situations before, or cry about what scared us. That experience quickly showed me how important it would be for me to find a community like Saskatchewan Epilepsy Inc., so that I would have folks to find commonality with.
I also received good news from the Doctors. Since they could see all the seizures were occurring in one section of the brain tissue, they recommended a left temporal lobectomy. That kidney bean-shaped section of my brain had not fully grown, so having a brain surgery focused on that area could really help. It was a hard decision to make, we had to discuss potential side-effects like memory and vocabulary loss, but in the end, the support of my family made me certain that I was ready to take that risk and try it.
It took about a year and a half for me to fully heal. I had to work on speech therapy and building up my vocabulary, so I came home to Saskatchewan and settled in to work on speech therapy with Wascana Rehab’s day programming. I played a lot of scrabble, worked on things I enjoyed, and gradually started reading again. Even today, if I am tired or stressed I tend to forget a lot of words, so my friends and I play a lot of charades games. Two years later, I was able to move into a mid-management job, focused on project management as a career facilitator. While working there, it really opened my eyes to notice a lot of the invisible barriers that could hold people with health conditions and disabilities back from job opportunities that they are truly skilled for. Even though I moved on from that job long ago, it has opened my eyes to ways that traditional accessibility strategies may not be working, for unexpected reasons. I am grateful for that lesson, it has motivated me to work even harder on breaking down non-visible barriers for other folks in my community.
Unfortunately, my seizures did return after I had five years of very good health. Still, the long-term benefits that the surgery has given me have made the whole process totally worth it. Thus far, it appears that I will not be able to have a second surgery, but research is always expanding, so who knows where I will go from here. Now, I simply do not drive, I take medications to manage my condition, and I continue paying attention and consulting with my neurologist. Several times now I have had to switch medications because a drug will sometimes lose its effectiveness, which is another reason why I like to stay involved with Saskatchewan Epilepsy Inc.; conversations with our members help me keep up to date on new meds and research options, and it keeps me in contact with friends who are looking for solutions similar to my own.
My journey has opened my eyes to the far-reaching and troubling challenges that disabled folks face every day. Currently, one in five Canadians have a disability, and as our population ages, those numbers will increase. At the same time, I have come to realize that my health condition has taught me the most important lessons I have learned in my life. I have started finding ways to support health-focused projects, as a Patient and Family Advisor with Saskatchewan Health Authority, developing an epilepsy testing unit for Saskatchewan. I am proud of my identity as a disabled entrepreneur and community organizer, and I will always be a passionate advocate for our community.
- Carla Harris
Ken's story
It seems like I've been cheating the Grim Reaper my whole life. I was 11 months old when I almost died due to dehydration. At 19, I was in a four-car pile-up on a highway, and then I had cancer at age 45. But no experience reshaped my life quite as much as learning that seizures had been hijacking my brain for years. And no one knew seizures were happening until I was 53. My first Grand Mal seizure occurred while I was driving, when I drove through a red light on Highway #1. My spouse was able to turn off the vehicle, and as it slowed she steered it to a safe spot. I regained consciousness in an Emergency Room, not knowing that my life was about to be changed. We finally discovered that I had a very serious and potentially lethal case of Adult Epilepsy.
We know that brain seizures occur in a variety of ways and with different intensities, and each one damages the brain. Based on the medical data gathered by my Neurologist, he also believed I had been experiencing as many as 200 seizures per day, likely for most of my life.
When my grand mal seizures started, I wasn’t conscious of what was happening. It was my spouse, family and friends that would see them happening. Thrashing movements of my seizures, my skin turning blue and foaming at the mouth, I can only imagine how scary it must have been. Everyone in my life began living with heightened vigilance whenever I displayed a behaviour that could be taken as a precursor to another seizure. Over the years we tried many different drugs but I was allergic to most of them, so we kept searching. In spite of medication, my grand mal seizures continued for 11 years and after one grand mal seizure lasted 16 minutes, the late Dr. Jose Tellez- Zenteno in Saskatoon decided to try brain surgery.
In 2019, his team removed a piece of my brain about the size of a golf ball. From that point on, my life has been seizure-free, but I had been changed in many ways I hadn't expected. I was unprepared, because my brain was so accustomed to those seizures, but they had stopped so my brain was facing a “cold turkey” situation.
I had once been the top life insurance agent for my company in the entire country. I have driven over 1,000,000KM in a career covering this province, and I lost my driver’s license for 5 years in my 50’s. This severely altered my career, and then I was forced to retire long before I was ready.
Under my new reality I was faced with wide gaps and I had to figure out how to fill my days. I needed more sleep each day to help my brain heal, so I would often miss social gatherings with family and friends. My short-term memory became poor. Even now, I regularly ask questions over and over, and I often repeat the same mistakes. For something as simple as buying groceries, I need a list for 3 or more items, yet I often make errors with such a simple job. It has been — and it still is — embarrassing.
I am much more emotional. I choke up and sometimes cry when I relate a story with deep meaning. I often cry when I try to sing a familiar song. My social skills are sometimes lacking, and I might say insulting or inappropriate things. I feel guilty that my spouse is now my caregiver. I might be a grown adult, but sometimes I feel like I'm a four-year-old that she has to help guide. It seems so unfair to her.
The surgery altered my brain in such an extreme way that at one point, I went into a downward spiral. I slid into a deep, dark place — so dark that I attempted to end my life. My spouse watched that attempt, yet she still rushed me to the hospital where they were able to save me. It was the fifth time I'd come so close to death.
That’s when I finally got more help from an excellent Psychologist. He gave me new psychological and behavioural tools. I still use these tools to help overcome life’s changes, and they sure help. He helped me turn the corner because I had struggled with words and sentences. He helped me learn how to communicate better, and we trained my brain to reframe my thoughts in a new and positive direction. I also focus on feeling gratitude, and how to find things that bring joy into my life.
When I realized the harm I had done to my spouse, I broke down and I sobbed. Brain surgery may have taken some thinking and memory skills from me, but I have journeyed to know that I've kept the most important things in life — my value, my accomplishments, a newfound self-confidence, my positive contributions to society, my worth and my love. I came to realize the significance of what I had tried to take away from my family and my grandchildren, and I will never do that again. I may not be who I once was, but I still have value in their lives. It has been a struggle to reach this point in life, but I’m glad I did because I have more to give.
-Ken Pilon
Ken Pilon spent 26 years working in the life insurance business before adult epilepsy forced him into early retirement. He still mentors young sales people. He has since been a Key Note Speaker multiple times to talk about sales, the human condition, and his experiences with life and death. Written in Regina with the Editorial guidance of Janani Whitfield of CBC
The Life I Was Given
Epilepsy is in my family. Rumours existed about my grandmother having ‘black outs’. My oldest brother had grand Mal* seizures since adolescence. I was 6 years younger so had little to do with this ‘older’ brother. I did witness one of his grand Mal* seizures one Christmas when I was a pre-teen. It was scary.
Throughout my life, I had occasional incidents of dropping things and stumbling. None disturbing or dramatic enough to notice or bring to a doctor’s attention. Reasons for epilepsy, could be high fever as a
baby or a car accident at age 15. Neither were only possible but not clear. My first grand Mal* seizure was at age 19 in the middle of the night while I held my infant. I only recall being in the hospital in a cold exam room, had an EEG and my physician telling me that I had epilepsy, referred to a neurologist. Phenytoin and phenobarbital were ordered for me to take at night. Many years later, dosage times were changed to three times a day to prevent morning headaches from full dosages at night. Over the next 10 years, I struggled with taking them as they were ordered.
In nursing school after that first grand Mal* seizure, I was told by the nursing school director I would not have to leave nursing unless ‘epilepsy affected my work’. My late 20’s, I began intensive self education to manage my seizure activity. A naive goal? Maybe, but I did change my night time sleep habits developing healthier sleep hygiene habits. I took on personal responsibility to take medications as ordered and managing stress.
Due to any mismanagement of my medications, the dosages of anti-convulsants were increased from three times to four times a day.I was taking my medications the way they were ordered, but increased dosages were too much for my system. With flu like symptoms I saw a physician. My drug levels were obtained, I was taking double the toxic levels. After consulting with my neurologist, my medications were decreased. Unfortunately I had a break through grand Mal* seizure because the levels went too low. Levels were rectified and I regained stability. I am still on the same dosages of phenytoin. (Phenobarb had been discontinued fot me.)
I had breakthrough grand Mal* seizures, after seizure free 10 years, after 11 years and another 10 years. With each breakthrough seizure, I was able to trace a possible trigger(s). Never with any proof other than identified symptoms or information from Epilepsy Societies. In between grand Mal* seizures, I had what I called ‘blips’ or ‘jumps’ involving my right arm to spasm suddenly or my right leg to give out on me. I fell, burned myself, broke cups, or felt confused. Exhaustion for the rest of the day follows these incidents, still today. They usually occurred in the early morning shortly after getting up, I learned to keep mornings as quiet as possible. I had about 30 seconds to get to safety; warning that a possible grand Mal* was in the offing. Working day shifts made quiet mornings almost impossible in the rush to work. I had exhaustion and/or depression between shifts.
My nursing career lasted 50 years. Beginning of my career, I had to find shifts that would fit my epilepsy: part-time, evening shifts (3pm to 11pm) were the best, no late night shifts. The last 15 years of my career I had a permanent part-time position with some 12 hour shifts. With all day shifts, I learned to be much more careful with my life, both inside and outside my work. Having a good number of days off was very helpful. I filled evening shifts which helped my pay cheque.
In midst of long spells of time free of grand Mal* seizures, it was too easy to wonder about my original diagnosis. It takes one of the ‘blips’ or ‘jumps’ to remind me that epilepsy is a reality. Two recent events occurred that challenged early morning routine. I had two afternoon ‘drop attacks’ - a sort that I never had before with such forcefulness. No warning, an instantaneous fall forward, landing on the right side of my head. The first fall I landed on my right eyebrow, second fall I landed farther up on my skull. Both with a small cut, enough to bleed and dribble down my face. In both cases, a large bruise covered my forehead and eye. The first was unwitnessed and I believed I stumbled on a piece of raised sidewalk. The second was witnessed by a passerby who stopped to make sure I was alright. In both situations, I do not remember an actual fall. Details of two falls were similar, I believe they could have been seizure activity. I was annoyed and embarrassed that I had fallen.
I am now 79. I know that some of them could be a result of my scoliosis, but these last two I want investigated by a neurologist. My current neurologist retired ; I now wait to see a new neurologist I’m referred to. Until then I will take all precautions that I normally do,
inclusive of a new one, Temperature greater than 25C will keep my walks very short or keep me indoors. If I feel ready for a nap, usually around 2:30 pm - I will take one. This new turn of events frightened me badly. I took walks outside but never long walks, though I love to walk. The first few days I was afraid to cross streets, feeling like a child just learning the ways of the city. Relocating space between independence and safety is my challenge.
*grand Mal seizures are now referred to as as tonic/clonic seizures