There is one experience I have briefly touched on since I began this journey with my Blog. The time I began to develop Seizure activity in 2010. It is hard to believe it has been seven years since. Rather than getting every specific detail from my wife of what happened next, I’m choosing to share my first hand experience.
At the time, I was hard at work coordinating a large scale meeting for the company I was working for at the time. This meeting included, 40 Store Managers, District Managers as well as the Executive Team from the Home Office. I put a lot of planning into this meeting, arranging the venue, developing the talking points to be discussed as well as visual presentations. This sort of work is in my wheel house!! I thrive on working and creating such events. I do feel nervous beginning to facilitate, although once I get going I quickly am able to focus, simply enjoying myself! Large crowds do not intimidate me, even with the President and CEO of this Canada wide company in attendance. Unfortunately my colleague was comfortable in a different fashion. She was one who chose to fly by the seat of her pants, quickly and easily finding herself off topic. The night before the meeting I made sure all presentation equipment was functional, the hotel signage was up for the attendees and my notes were in order for the next day.
When I arrived home, I felt enthusiastic about the next day and tired as expected. Our daughter was only a few months old at the time so I ate and headed off to bed not knowing the next few hours were going to change the course of my life.
All I remember was my wife waking me up asking if I was alright. I remember her tone was very different from usual. I felt as though she woke me up from a very deep deep sleep. At first I didn’t know where I was, my wife asked if I knew my name, a question I vaguely remember not knowing the answer to. What seemed as only a few minutes turned out to be much longer in real life. She had left the room, then returned. She told me I had wet the bed with urine. I had the feeling of being incredibly drunk. When she tried to help me off the bed, we discovered together the immense difficulty I had in just moving from laying down to sitting upright.
The next thing I remember, my wife looked at my hands noticing I was bleeding. Later in the hospital we were told during the seizures I had clenched my fists’ so tightly my nails dug into my hand. When making a fist after the fact, the punctures lined up directly with my nails. My wife then helped me get changed and washed up to go to the hospital. Meanwhile I was trying to convince her I was fine and just wanted to go back to sleep. Then I looked up and saw my mother standing in the doorway. I didn’t understand what she was doing there. I remember feeling more confused about the situation.
Again, my memories are very lucid of what happened next. I remember looking out the window of the car as my wife was driving me to the hospital. I began to remember this large meeting and mentioning “I hope they let me out before it starts” Politely my wife told me I would not be going. We tried to call my colleague, eventually getting a hold of her to say I would not be coming. I remember her asking me all sorts of questions over the phone about the presentation. I was still very out of it and trying to answer the questions she was asking. Eventually I told her I had to go, I couldn’t speak the words I was trying to say. It’s a disturbing feeling to think to yourself ‘I know the answer to the question bit I can’t remember what it is’.
At the hospital I don’t remember much at all. They ran tests and an MRI. We were then told it appeared I had a seizure, with the cuts on my hands and loss of bodily functions the doctor knew right away it was a Gran Mal seizure. He related seizures of this degree to powering off your computer then restarting it. He explained it my brain and body were slowly rebooting which explained how as time went on I became more coherent.
Before leaving the hospital I was placed on an “anti-convulsant” medication which I happen to still be on. We were told what signs to look out for at home, and not to drive until further testing was completed. These tests were to identify whether I had Epilepsy. After days of tests, it was confirmed I do not have Epilepsy. Still, I spent the next few months with an Occupational Therapist as I had new mobility challenges. I was able to walk, just not straight, quickly or for distances longer than roughly a city block. This is when I first used a cane. The OT recommended I use one, she would help me to mentally get over the stigma I placed on myself. You see, when I was diagnosed I promised myself no matter how hard it gets, I will mentally overcome the challenges and never allow myself to use a cane or end up in a wheelchair.
I came to the realization this was not physically possible after the seizures. While I was working with the OT, she had gently brought up the idea of a Handicap Placard for my vehicle. Something she thought would be of great help. She mentioned something that seems pretty obvious now but I had never thought of before. She mentioned how I may feel fine walking into a mall, or beginning a day out with my family but what about when it’s time to return to the car? Would I have difficulties once I am fatigued while out? With that simple statement she convinced me to let down my guard to realize I realistically would benefit from having one. Even now, I still use the placard on occasion.
The same can be said for using my cane. This was the first time others could see the physical signs of the disease. I bought my cane from the same pharmacy I purchase my Ostomy supplies from. I did my best to act excited in front of my wife, when inside it was crushing my soul. I felt as though I was giving in to the disease, rather than fighting the disease. It took a lot of getting used to when using my cane in public. I didn’t want to go anywhere I might bump into someone I knew. This is a common thought for most when beginning to use an ‘assistive device’. What I quickly learned, by using the cane I am able to preserve a fair amount of energy. It didn’t take to long to get over my personal insecurities when I felt the benefits.
Another lesson learned through this experience is to really listen to your body. After the seizures, the doctor was asking me questions about how I had been feeling in the weeks before the seizures began, together we discussed the stress levels of my job, having a new baby at home and if I had any physical symptoms. During the conversation I had mentioned how I had many “Déjà Vu” sensations the weeks leading up to the Gran Mal. Then He stopped me, asking me to describe what I had meant and how my body reacted to these unusual episodes.
The example I shared was, while watching Big Brother I started to have very very strange sensations take over my body. If you’re not familiar with the concept of the TV show, a group of strangers are placed in a house under 24/7 video monitoring. They compete in various challenges until there is only one person left in the house as the winner. During one of these said challenges, the houseguests were placed on the end of a surf board coming in and out of a wall. Below the surf board was a fake beach.
The last person standing would be the winner. As the challenge began, the sensation of “Déjà Vu” set in. Very quickly my heart began to race, I became dizzy, my hearing was lost, I could not focus on anything. The more I watched these surf boards move, the more uncomfortable I became. There was a strong sense of heat in my face, I rested my head back, closing my eyes. I felt incredibly dizzy and paralyzed. It was as though my entire body turned off. As it began to pass, my mind and entire body felt incredibly exhausted. You know when you are in a deep sleep and someone wakes you up? For a few seconds you don’t know where you are and cannot really move. This is the best way to explain what it feels like.
After listening to this, the neurologist explained what I had experienced during the TV show was in fact a form of seizure. As soon as he said that I felt nauseous. I told him I’d been having this experience, to different degrees, off and on. Needless to say I was scared out of my mind! To this day, if I mis a dose of the medication I begin to feel these same sensations creep back. Only to settle back down once I begin to take again.
What was the ultimate cause of these seizures? The answer is still clouded. Once diagnosed with MS, I began a treatment called Rebif. After three years my MS progressed to an accelerated rate both physically and diagnostically thru MRI. My neurologist highly recommend Tysabri. He explained the success stories behind the drug, along with it’s risks. One being;
“Progressive multifocal leukoencephalopathy (PML) a demyelinating disease of the central nervous system (CNS) characterized by widespread lesions due to infection of oligodendrocytes by JC virus, which is a human polyomavirus (formerly known as papovavirus)”.
After testing JC virus negative, I decided to roll the dice. My neurologist was very hesitant to explain the seizures as a case of PML. It wasn’t until years later, when I was in the hospital with Pyoderma Gangrenosum, that a team of doctors, including two other neurologists, determined it was most likely PML. Lucky for me the ‘anti-convulsant’ medication continues to keep in under control.
Eventually I recovered as I always do. I did have to go through a medical drivers assessment through the OT. I was cleared to drive and now have a “Conditional Drivers License”. Meaning I have to renew more frequently and may need to be reassessed by a doctor before renewal. I did get a Handicapped Placard, only using it when my body tells me I need too. Same can be said for my cane. On occasion I let go of my insecurities, using it at work in the past. I now know there is absolutely nothing wrong with getting a Handicap sign and using a cane when needed. It’s not giving in to the disease but simply adapting to the disease to live a more comfortable life.