Month: September 2014

We Day Toronto!

download

We are super excited to be special guests at We Day Toronto this Thursday, October 2nd celebrating Caitie’s Canadian Living Me to We Youth in Action Award. Caitie will be on stage around 12:20 pm EST (that 9:20 for our West Coast friends). You can watch the live on MTV!

Advertisements

The Truth is Every Day is Not a Great Day

by Caitie Shaw

I’ve written my story before. But I’ve always focused on the positive because I believe that’s the way to moving forward. Lately, I’ve noticed that while positive attitude is awesome it’s important to acknowledge the bad stuff, too. Especially when sharing with others who are suffering from Epilepsy.

The truth is every day is not a great day. I know that’s true for everyone but it’s different for people with Epilepsy.

For me I struggle with the constant worry that I’m going to have a seizure. Especially in social situations. And as a teenager that’s really tough to deal with on a daily basis. I’ve never seen someone have a seizure but I’ve seen videos of myself having a seizure and it’s not a pretty thing. Often I stop breathing. Then, I snort. Yes, snort. It’s not at all attractive. My eyes roll back. I go stiff and then I jerk around. A lot of times I also throw up.

Can you imagine doing that with a group of teens? How would you react? How would I react?

I’ve been really lucky because almost all my seizures have been with family. My little brother still makes fun of me having them but he’s my brother and that’s what he does. He loves me (even if he doesn’t show it). But what about kids I don’t know too well? If my own brother makes fun of me, I can only imagine how some people might react. I want to believe that they would be understanding but part of me is scared they wouldn’t be.

So my coping mechanism has been to stay home when I feel like I might have seizure. This has resulted in a LOT of missed school, not to mention missed parties and social events.

But this year I decided I was going to put myself out there and try to go to as many things as I can. Because staying at home so much is pretty lonely. I like being around people my age. I don’t want to miss out on all my teen years.

Even though I’m turning over this new leaf, it’s still very hard to work up the courage to go to these things. Every time I go into a new social situation, I’m scared. I have to force myself to go out the door.

Being an Epilepsy advocate and co-running this website means I read a lot of stories from people who have Epilepsy and too often those stories are sad. They are about bullying and stigma – at school, in social situations and at work. Sometimes even in their own families. It’s heart wrenching.

Even people who get through their teen years relatively unscathed have to deal with ongoing issues related to seizures: brain damage, side effects of medication, the worry that they won’t be able to have children of their own. And I wonder if my future will also be filled with such worries.

I’ve had a lot of good happen to me through my advocacy. I’ve made life long friends, I’ve won a national youth award from Canadian Living and Me to We, this website is even a finalist for a world-wide award. But the shadow of Epilepsy affects my life every day. The challenge is to not let it win.

Believe!! Ann Marie’s Story

BELIEVE!!
by Ann Marie Gillie
When it came to curing my epilepsy, it turned out that surgery and a positive attitude was the answer!
securedownload (11)
It was December 3, 2002, three weeks before my 33rd birthday. I was determined that this would become an anniversary that my family and I could celebrate in the years to come. Our boys – Mathew, then 8 and Cameron, 4 – were at their grandparents’ house. My husband Richard had taken time off to be with me in the hospital and at home after the surgery.
I was about to have a small portion of my brain removed in order to try and put a stop to the epileptic seizures I’d experienced for most of my life. So Richard and I got into the car at six that morning and drove through the snow to the University of Alberta Hospital in Edmonton, Alberta. I could tell Richard was nervous, but he still tried to put me at ease. I didn’t need to be put at ease. I was so excited and actually looking forward to this crazy surgery I was about to undergo.
“Are you ready for this?” Richard asked me.
I’d never been so ready. I wasn’t scared at all
.  Downloads-004
I think I even raised an eyebrow or two at the hospital. I guess brain surgery patients aren’t usually so thrilled or excited to be prepped for such a surgery. But I wanted to put an end to the seizures which were a constant worry. Just two days before my surgery I was cooking dinner when I got an aura. I started to feel sort of detached, spacey. I reached out and fumbled for the switch to turn off the stove burner. I made it to the living room, sinking to the couch before the seizure started.
My seizures, both petit mal and grand mal, all started with auras that lasted about half a minute. (The seizures themselves were generally less than two minutes.) The auras were warning signs that saved me from hurting myself or someone else, either through falling or dropping something. I could get into a safe position, either onto a bed or floor, the floor being the safest spot. If I was with someone, I could warn them. But the auras couldn’t tell me if the seizure was going to be a short petit mal or an aggressive grand mal. Sorry I still use the old terms when it comes to seizures … old school I suppose.
The seizure I had that day turned out to be a grand mal. Three-quarters of an hour later, I was back to making dinner, feeling sore and tired.  As I stirred the spaghetti sauce, I wondered if I’d just had my last seizure.
People with epilepsy can live normal lives. It creates obstacles, but you can work around them, especially with the support of family and friends. Epilepsy is a brain condition characterized by recurrent seizures. Approximately 10% of Canadians will experience at least one seizure in their lifetime, but about 1 in 100 have epilepsy.
In 400 BC, the Greek physician Hippocrates wrote the first description of epilepsy and considered it a physical disorder. But people still thought epilepsy was a curse, demonic possession or some kind of prophetic power. It’s described in the bible and once was considered the mark of a witch. In the early 1900s the first epilepsy specialists emerged and two independent teams of chemists created Phenobartial, which is the oldest epilepsy medicine in clinical use (it’s the first medication I ever took for my seizures). In 1929, German psychiatrist Hans Berger devised a way to record the electric currents generated by the brain and render them graphically into a series of peaks and valleys. This test is the EEG (electroencephalograph), of which I’ve had several.
There are several types of seizures and a variety of reasons behind them. The EEG allows doctors to see what a seizure looks like on paper. I know what they’re like from inside. My husband Richard tells me that when I was in the grip of a petit mal seizure, I nodded my head, made noises with my lips and sometimes rambled, but mostly just made noise without forming sentences. I don’t remember these details. Most of the time I wouldn’t fall, and I remained half aware of what went on around me, but I couldn’t respond to people.
If I felt a seizure coming on while I was at work, I’d sit down and grab the phone, hoping it would be a petit mal and nobody would notice. Once, I was in line at the grocery store and I felt an aura. Fortunately it turned into a petit mal. The cashier kept talking to me but I couldn’t understand, or answer.
I just kept “searching” for something in my bag, unable to stop until the seizure eased a minute later.
The grand mals were far more intense. They would cause me to convulse, shaking. My eyes would roll back and I would have to be watched so that I didn’t hurt myself on anything around me. The grand mals were exhausting. It would take me a half an hour to get back into what I’d been doing.
There are different treatments for epilepsy, from medications to natural therapy. There always seemed to be drawbacks to my meds: weight gain, loss of sex drive or irritability. For most of my life, medication was my only treatment. I was investigating a naturopathic treatment when I switched doctors and heard about a new surgery. If I was an eligible candidate, it meant I could be medication- and seizure-free.
I was two when my first seizure happened. I don’t remember it, but my mom says she was in the kitchen making dinner and my dad was reading the newspaper. My brother Mike, then four years old, ran into the kitchen telling them that I was acting funny in my bed. I’d been sick with a fever and my mom found me shaking; my colour was off and my breathing very shallow. My parents were horrified and immediately rushed me to the hospital. I was prescribed Phenobarb several times a day.
My seizures slowed and finally stopped when I was about nine years old. I was taken off meds and was free of epilepsy – inexplicably and happily – for 10 full years.
In the summer of 1990 I went on holidays to Vancouver Island. We were visiting a friend’s house in Campbell River when my mom looked over at me and noticed that I was acting funny – staring, muttering and not answering questions. She knew it was a petite mal.
Nobody can say why my seizures stayed away so long, or why they returned, but I was absolutely devastated. Just months before, I had started seeing Richard, I was dreading how this would affect our relationship. I felt embarrassed and worried that at my age, seizures would interfere with everything: my social life, love life – you name it. But Richard took it in stride. He took me to most of my doctor’s appointments. He had to, because I lost my driver’s license that summer. I was 20 and miserable.. But we managed to continue living a pretty normal life. I made some adjustments on how far away I worked and how I got there, and I always took my pills. Gradually the seizures lessened and my dosages lowered.
A few years down the road the seizures crept up on me again. Richard and I were married and our first son was born in December, 1994. Doctors told me to keep up with the meds and I was seizure-free during my entire pregnancy. I worried about the effect of the meds on the baby, but Mathew was born healthy with all his fingers and toes. Not long after he was born, the seizures started again. I was a new mom, but stubborn as ever. I didn’t want to be told to be careful with my baby, but I knew I had to be. I changed Mathew on the bed or the floor, rather than a change table. I always sat on the floor with him or on furniture in the carpeted living room. I never took him for walks or bathed him (or myself) if I was alone. We had a pretty good routine going.
Our son Cameron was born in November 1998, and again my pregnancy was seizure free. But after Cameron was born, the grand mals seemed to increase. My medications were increased to seven pills a day of both Tegretol and Topamax, which I hated because of their side effects. But I had two children at home and needed to control the seizures.
Then, in 2002, I decided to change doctors for a fresh approach. My family doctor, Dr. Jeff Moss, who I also worked with and was an amazing support for me,  referred me to a new neurologist, in Edmonton, Alberta. Than this new neurologist of mine referred me to the University of Alberta Hospital to see another new doctor, who he than told me there were new surgical treatments available for some types of epilepsy. That referral changed my life forever.
I was sent  for a complex set of tests, called EEG Video Telemetry Monitoring, to see if they could pinpoint where in my brain the seizures were coming from. They attached about 30 wires to my head. (It wasn’t a nice look.) I spent the next eight days in a small room while they recorded my brain patterns. I watched enough DVDs on my laptop to last a lifetime. And I had enough seizures for the neurologists to see where they were coming from.
They told me I had focal ictal onset in the left temporal region. A small region of my brain had been damaged during the high fever I had when I was two. The seizures originated there, making me a candidate for a “left selective amygdalohippocampectomy” to remove the damaged tissue.
I was so excited. My husband and I went to see the neurosurgeon, who seemed relaxed and confident about the procedure. He really put us at ease. “It’s like he was talking about removing a hangnail,” Richard joked after we’d left. The eight-hour surgery went off without a hitch and I don’t remember much about the following day.
Later, they took the bandages off, and it looked even worse than the wires. I had 50 staples in my half-shaved head, but amazingly, nothing hurt. It was nothing a bandana couldn’t cover.
My recovery was like my hair – it grew slowly, in stages. For a few days after the surgery I really had to work at walking; it was like I was learning over again. I had a therapist, and we would walk as far as the nurse’s desk before we went back to my room. My best friend since we were 6 yrs old, Jillian, who lived in Florida, called me several times. Her calls were good for me, because I had to walk to the phone by the nurses’ desk. I also had to work on my memory skills. Various Capital Health therapists worked with me on my memory and general motor skills for more than a year. But it’s been 11 1/2 years
since the surgery and I am 100% back to where I was before, if not better. I am finding that I do need to manage my days differently than before; even though my memory is back, I still need reminders. My calendar is full of “to dos” like work hours and appointments, but I am told that comes with age :c)
Recently Updated1-003
After the surgery, I fell into a depression that I didn’t expect, even though I was warned that it was a common effect of neurosurgery. It was like being on a roller coaster and not knowing if it was going to stop. Some days were normal, but there were dark, stressful days as well.
Gradually, my depression improved. I also started to write poetry shortly after my surgery. It was a new experience for me and was kind of therapeutic, I think.
Even through my seizures and after the surgery, I have always remained very active in my community, which helped me through the healing process. I live in Spruce Grove, Alberta. I’m a teacher’s assistant with Parkland County Schools. A few months after the surgery, I also started an epilepsy support group in Spruce Grove.
In 2005 I joined the Edmonton Epilepsy Association as a volunteer on one of their boards and I had the goal of becoming a director. I am happy to say that in 2005 I became a member of the Board of Directors, partly thanks to the patience of Daphne Quigley, a nurse for Capital Health who let me bombard her with questions about the EEA and supported me before and after my surgery. Presently I hold the position as Vice President for the EEA and couldnt be prouder.
I am also a very active motivational speaker, and to me helping others seems to be the best reward ever. I have spoken in places like Phoenix, Arizona – Calgary, Alberta – Toronto, Ontario and Edmonton, Alberta. My goal is to speak internationally and spread Epilepsy Awareness around the world. I started an Epilepsy Support Group on Facebook several years ago to and I love the interaction of those on there, its very rewarding.
Since my surgery and the long recovery, I have not had a single seizure or taken any meds. I feel like a new person – in fact, so much so that 8 yrs ago Richard and I decided to add to our family and 7 years ago we had our 3rd son Nathan.
My life was challenging before surgery, but now it’s a new life, new beginnings, I always say lets start checking off my bucket list items because if I can beat the odds of neuro surgery and be 100% seizure free and off all meds, than I can do ANYTHING!
2014-01-027

 

Garage Sale for the Epilepsy Awareness Squad

This Saturday (September 13th) we are hosting our second annual Garage Sale!

10631268_309134012592289_3339337355322387415_o

Because we are a non-profit and have no operating budget to speak of, we run on donations and fundraising activities. This is actually the FIRST big fundraiser that we are doing for the Epilepsy Awareness Squad, itself (all others we’ve done, we’ve donated everything to larger epilepsy organizations). But as we grow we are finding that we need to have a bit of a funding to continue to spread the word.

So please support our garage sale and share this info with your network.

When: Saturday, September 13, 2014 from 8:30 am – 3:30 pm

Where: 10006 Giants Head Road, Summerland BC

What: Books, Kids Hockey Equipment, Toys (TONS OF LEGO), some furniture, kitchenware, DVDs, electronics (Xbox & games) and much more!

Jen’s Story

My name is Jen Annett. I am a wife, a mother, a professional triathlete, an employee, and I have epilepsy.

IMG_0661

I started having simple partial seizures (also known as Auras) after I got hit by a car in 2008 while I was on my bike, training for the Ironman World Championships in Hawaii. I continued to have these “spells,” which went undiagnosed, for 2 years. The doctors just kept brushing these “feelings” off as electrolyte imbalances from my training. I continued to race triathlon and Ironman, and it wasn’t until December of 2010 that I had my first Grand Mal Seizure.

I was supposed to pick up my husband from work. He called me because I was late, and woke me up from the couch. I didn’t remember getting there…the last thing I remembered was putting some Christmas presents away in one of our bedrooms. He asked me if I had been drinking because I sounded like it. I also had a lump on my forehead that I didn’t know where it came from. We were confused but just brushed it off.

The next day, I was helping a client at the bank that I work at. The next thing I knew, I was on the ground with paramedics standing over me. I had had another grand mal. I had fallen off the chair I was sitting on and was convulsing against one of the back counters. I had also lost control of my bowel and bladder right in front of my clients and fellow employees.

I was so embarrassed but at the same time had no idea what was going on. The paramedics kept asking me questions like “What day is it?” and “Do you know where you are?” I knew the answers but somehow couldn’t communicate my brain to my mouth. What was going on?! I got taken away in an ambulance to the hospital, and spent a couple days there getting tests done. Sure enough, the EEG showed some abnormalities in the right side of my brain. Fortunately the MRI did not show anything abnormal.

After I had explained the feelings or auras that I had been having for the last two years, they told me that these were in fact small seizures, also known as simple partial seizures that I had been having. They put me on meds and scheduled a follow up appointment with a neurologist. My appointment with the neurologist did not go well. I left his office devastated. He told me that I couldn’t drive, bike by myself, or even have a bath by myself. I was also told that if we wanted to get pregnant, that I probably wouldn’t have a normal kid.

I felt like my life had ended. I was only 25. How could this be happening to me? I was healthy, an Ironman athlete, and had no history of seizures in my family at all. I wanted a second opinion, so I was scheduled with another neurologist 6 months from then. In the meantime, the medication seemed to work as I was no longer having these little spells. When I had my appointment, he started talking about epilepsy. Whoa, whoa, back up a moment. Epilepsy?! Is this what I had?

I had heard about it before, but really didn’t know anything about it other than it had to do with seizures. We talked about a plan for me to get pregnant, and I was educated on the birth risks (which were not that much higher than a person not on medication). My situation was better because I was only on one med. Because I had no seizures over the last 6 months, we decided to try to wean off the meds, or at least to the lowest dose possible so that we could get pregnant. I had managed to get down to a next to nothing dose, and then found out that we were in fact pregnant!

Everything was going great until about 3 months in, when I started getting those “spells” again. Since I was at the end of my first trimester (which is when the risks are the highest), they increased my dosages again. I then ended up having a grand mal seizure when I was 5.5 months pregnant. I was rushed to the hospital, where they did a bunch of tests to ensure that the baby was ok, as I stop breathing when I have these seizures and the lack of oxygen can cause brain damage to the baby. Thank God, everything was ok and the baby appeared healthy.

I continued to have “spells” through the rest of my pregnancy, but somehow, we ended up having a perfect little boy (who is almost two and a half).

 

IMG_0500

 

A couple weeks after the birth of our son, I had another gran mal out of the blue. I was so paranoid about being alone with my newborn son. What if I had a seizure while I was home alone with him? What if I dropped him? It didn’t help that the doctors that I had at that time enhanced these feelings, and never offered me any support.

I continued to have my little spells, and didn’t have another grand mal again until Christmas. Almost all of my seizures followed the pattern of happening within 30 min of waking up in the morning. Well, this one was in the middle of the day…..just when I thought I might have figured something out! Over the next year I experimented with a more natural treatment option (still taking my meds of course), using a naturopath. We tried acupuncture, food testing/diet changes, homeopathic remedies, supplements, you name it. This helped a lot with other symptoms (headaches and digestive problems), and seemed to help with my seizures for a bit…..and then the spells would come back.

My meds were constantly being adjusted, but for some reason would never read therapeutic levels in my blood tests. I was frustrated, but at the same time, determined to not have this condition run my life. I signed up for Challenge Penticton (formerly Ironman Canada), and set off training. I went back to work in May of 2013, and was also training for triathlon at a professional level. Balancing family, work and training became a huge challenge, but thanks to the support of my husband, and utilizing my lunch breaks, I was able to squeeze it all in.

My racing year started off very successful, winning or coming second overall female in each race. My doctors advised against this sport as he risks of having a seizure in the water or on my bike were so high. However, the harder I trained, the less I had these little spells and never once in full training mode did I have a grand mal.

Challenge2013 227

I pursued racing Challenge in the Pro category, and came in third in 2013! After this race, I decided to cut my training back quite a bit as we were going into off season. Well, October rolled around, and whamo, I had 4 grand mals in a day. This was the worst yet. I had never felt so awful and brain-dead in my life. I was taken to the hospital and spent a few days there, and finally got referred to the epilepsy clinic in Vancouver. Oh, and the icing on the cake, my 6 months of no driving started all over again. This meant I had to walk/run/bike my little guy to daycare, even in the winter.

I went to the clinic in Vancouver, where we made more adjustments to the medication again (still on the same drug), with hopes to get my blood levels up. The idea of surgery was thrown out there, but I would have to have 2 meds completely fail before this would be an option. The wait for surgery is 2 years, so, given my history, they put me on the list. I left the clinic feeling better and more educated, but still doubtful that the meds would work. He said that with this particular type of epilepsy, it is 80% resistant to drugs. Surgery has an 80-90% rate of being successful with little or no meds needed afterwards.

Over the next few months, my medication was increased to over max dose, and still wouldn’t read in the therapeutic range. I became a totally different person. I was tired all the time and had no motivation to do anything. I didn’t even want to play with our little boy. Our relationship began to get stressed because of my lack of interest….I was just so tired all the time. This person was not me. 5 months after my last grand mal, which would be March of this year, I had another grand mal out of the blue. I went back to the clinic, at which time, they did some memory testing, and determined that I did actually have brain damage from all the seizures I had had in that one day. This at least explained the short term memory problems I was having. They also decided to try a new drug, as the old one obviously wasn’t working. The plan was to eventually wean off the old one, but it would be a long process. I continued to work my day job, and train and race, and to our surprise, I have had the best results this year that I have ever had. I have won or placed in the top three, and just a couple weeks ago, placed third with a PB in Challenge Penticton (an iron distance race).10660664_10152228064711104_232895743_n

I truly believe that the mind is the strongest part of our body. If you really want to do something, you can…and will…do it! I, by no means have been a “happy-go-lucky” person through these last few years. I have had my moments where I just want to give everything up. I just keep telling myself what I have accomplished and about the amazing life that I really do have with the perfect family. Sometimes that’s what it takes, is to just take a step back and appreciate the things that are good, instead of dwelling on the bad. Life will always present you with unexpected things that you have no control about. It is up to you to have the attitude you want. I always believe that there is someone out there that’s got it way worse…. And really…. I don’t have it that bad. I know that this condition will be a battle my whole life, but I just have to make the best of it as it comes.