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Linda's Story

My name is Linda McClure. I have had a wonderful career as a Associate Investment Advisor. I am a mom, a daughter, a sister and a friend. And, I have epilepsy.

My first seizure occurred on December 23, 2011 at age 46 in a Bikrams Hot Yoga class. I was not officially diagnosed until after a seizure on March 15, 2015. I had had a terrible headache that day which I’m prone to due to sinusitis, so had thought nothing of it. Shortly after my son had gone out for the afternoon, my seizure happened without warning. My son came home three hours later and found me unconscious. Medical professionals told me that I had continued to seize for an exceptionally long period of time and that I could have died. They said I was extremely lucky to have walked away from it without permanent and severe brain damage.

Through all my testing done back in 2012 they found nothing, but as we have since discovered, that wasn’t the case. The original MRI, that I had done privately due to the lengthy wait times, did not capture pictures of the area of my brain where my seizures where coming from. This wasn’t found until I had my March 2015 episode. I was 49.

I have what are called Complex Partial Seizures. I don’t fully understand all the medical jargon that goes behind explaining what this means, but I do know what I experience and they’re not a walk in the park, that’s for sure!

My next seizure in August 2015 landed me in the hospital for three weeks as they tried to keep my seizure activity under control. I was a mess! I was hearing and seeing things that just weren’t there and had trouble remembering basic things. I was a puzzle, a lab rat under a microscope. When they released me about a week later, I found myself on 4 different AEDs (anti-epileptic drugs). The pharmacy had to blister pack them for me, as I couldn’t remember which ones to take and when. Since they only do two weeks at a time and with a dispensing fee of $10 a pop, my drugs were costing me over $175 every two weeks! I have no benefits and my Pharmacare deductible is high so my out of pocket costs are pretty steep.

I’m on 4 different AEDs as drug therapy isn’t all that effective on me. Each of these drugs has various side effects which makes it difficult to function normally. Most of my drugs make me dopey. Some cause headaches, vision problems, sleep issues, tingling and joint pain, and memory problems. Being on all of these drugs and their possible interactions with other medications, I can’t take allergy pills, cough or cold medications. Getting the flu or a cold is a much bigger deal than it was before as my AED levels need to be maintained.

My life has completely changed from what it was. Since my August 2015 seizure I have not been able to go to work. I help clients plan their financial future and offer investment advice. I’m doped up on so many drugs and have a tendency to forget conversations and even words sometimes. I have a hard time making even the simplest of decisions. Would you want advice from me? I have my groceries delivered cause I can’t drive. Someone else cleans my house every 2 weeks cause I tire so easily. I rely on busses and cabs and family and friends and my feet, weather and stamina permitting, to get me to appointments and just to get out. No more hopping in the car to hit garage sales and wander shops and malls and walks on the beach by myself, lost in my thoughts, like I used to do. I can’t handle large crowds and noises; so movies, concerts, hockey and football games, I watch from my couch versus seeing them live.

With my very first seizure, it was more the type that one sees on TV. I was thrashing about and chewed up my tongue. My last seizure in July 2016 was also similar to what’s depicted on TV. My right arm was jerking about, I couldn’t breath or talk proper, my face was distorted with pain and the rest of my body was twisted and frozen. I couldn’t move afterwards. My mind was telling my body to move, but it wasn’t responding. It was like I was paralyzed. I had to sit in the ER hallway for quite some time before they would release me. I couldn’t go until I was able to bear weight on my legs and even then I had to leave using a walker! I was 50!! Who needs a walker at 50??!! With most of my seizures, I completely blank out. I lose total awareness of where I am, what I see, what I’m doing or where I’m going. I’ve been told that my eyes are open and I can respond to simple commands, but I have no recollection of these events.

I would say I’m one of the fortunate ones not to suffer multiple events daily or weekly. Since March 2015, I’ve averaged at least two BIG seizures per year. If you include the auras, the number changes substantially. The number of auras can vary from 18 to almost 50 per month and while not as debilitating as the larger seizures, they’re still mentally and physically draining.

These auras have preceded the BIGGER seizures and on days where they occur more than once or happen 2, 3, 4 or more days in a row, my anxiety levels increase as I wonder, “am I headed for a bigger seizure?” For me, my biggest trigger is stress. Everyone has some sort of stress in their lives and they say some stress is good. I can say that I’ve had my fair share of stress over the last 10-15 years and have always been able to manage it. What I’ve found over the last 2 years is trying to manage the regular day-to-day stress PLUS dealing with the stress of my Epilepsy has been overwhelming. I’m widowed with a 22-year-old son who is still trying to figure things out for himself. I’m a fiercely independent person who finds it difficult to ask ANYONE for help. Life is complicated enough but when you add in a chronic illness such as Epilepsy some days you feel those molehills ARE mountains.

My last BIG seizure was July 14, 2016. It was the first one that my 83-year-old mother had witnessed and it shook her up to see her daughter going through such agony as she stood helplessly watching. Previous to this one, I had a seizure in April 2016 in Home Depot. I had been out for a walk by myself and wandered in to look at patio furniture. This one felt different however and somehow I knew I had to sit down. I have no recollection of doing so and was found sitting on a piece of patio furniture and 911 was called. One thing that can often happen during a seizure is you can lose control of your bodily functions. I lost control of my bladder that day while sitting there on patio furniture in Home Depot. Fortunately for me I have no recollection of this, but just the thought is horrifying indeed.

I was a candidate for surgery. My Neurologist had referred me to the VGH seizure unit in 2015 however due to the lengthy wait times as Neurologists were leaving to work elsewhere, he referred me to the Calgary unit. I was admitted in February 2016 for monitoring and it was determined that I was a good candidate for surgery. My surgery was performed on August 2, 2016 and I’m slowly recovering. In order for my brain to heal they have kept me on my 4 AEDs and I continue to struggle with depression and anxiety and am now on medication to help stabilize my moods. As one can imagine, a number of nerves were severed in the process and as they heal and repair themselves it is quite painful. I find myself on medication for that as well. The addition of these 2 other drugs help, but only slightly as the doses are low. I’m now currently taking 6 different medications with no plans, as yet, to reduce them in the foreseeable future.

The medical system in BC has let me down. I’ve had to travel to Calgary to get the necessary care I’ve needed to treat my condition. They have the resources, without the delays, to help those like me where AEDs just aren’t enough. Last year, my family and I spent close to $10,000 of our own money that MSP doesn’t cover for travel and accommodation expenses. I’ve already spent about $1,000 this year with another visit to the seizure unit coming up.

I want people to know epilepsy is more than what they see on TV and in movies. I want them to know it’s different for everyone. Just as no two snowflakes alike, no two seizures are alike. What causes one to happen, how each person’s form of medication to treat/control the seizures can vary, that many can lead perfectly normal lives while others face more difficult challenges. When I mentioned to someone that I had epilepsy, their comment to me was ‘wow, you wouldn’t know it. You look fine. Your eyes are bright and normal. Your face looks good and your speech is fine’.He didn’t even know what a seizure was!

Education and awareness is key. It’s time we stand up for ourselves here in Canada and start speaking out for the hundreds of thousands that deal with this, and have dealt with this, for years and years. Talking about it, donating to research, educating themselves on what it is and how to deal with a seizure in an emergency. There’s so much misinformation that needs to be dispelled. I hope that by spreading my story and raising awareness can make a difference. To be an advocate to speak up and ask the government to allocate more funds to provide the proper care so others don’t have to go through what I am. It’s not just the cost. It’s sitting in a 9x9 room away from family and friends that adds to the loneliness and isolation that already exists.

Right now, my biggest challenge is recovering from surgery and not knowing yet if it was successful or not. Knowing that my recovery has a way to go yet. A process. One-step-at-a-time. As I’ve said before I’m a control freak, I like to plan things and I’ve always known how to handle things.It is difficult not knowing what my future holds. Not knowing what I’m supposed to do with my life. Not knowing if a cure will be found, will this ever end? Will it ever get easier? That’s the hard part for me. That, and the fear of waking up in the ER yet again.

I want some of my life back. I know I won’t get it all. I’m a realist. I’ve resigned myself to the fact that I probably won’t drive again and I won’t be able to go back to the work I did before. But I hope to be able to find some purpose behind what I’ve been through or at least be able to help others in some way.

-Linda

 

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