David’s Story, Age 51, Toronto
In what might be the most ironic comment ever, I’m of two minds. One, I’m a guy who is a statistical anomaly having survived if not prospered from a brain disease that should have killed me, and two, I’m a guy who doesn’t want to be defined as “the guy who survived that brain disease that should have killed him”.
I probably should take a step back and explain how this all started.
In February 2013, I had an episode that, well, was unusual to say the least. I was driving with my family on a highway to an event when all of a sudden I seized up. My arms locked straight, firmly on the steering wheel, and my legs extended straight, pressing firmly down on the accelerator. The car started going faster and faster while I completely zoned out. My wife noticed what was going on, and, from the passenger side of the car, took control of the car, dodging around other cars, elbowing my chest in an attempt to give me compressions, and trying to kick my foot off the accelerator pedal. She eventually got control of the car, and pulled it to the side of the road. She called 911, who proceeded to tell her that an ambulance has already been dispatched because several cars already called noticing a car travelling erratically down the highway. A few moments later I was in the back of the ambulance, streaking down the road on my way to the hospital.
I don’t remember any of this. In fact, I don’t remember anything from the next 22 days. Yes, I spent the next 22 days in the North York General hospital essentially in a fog, surrounded by my friends and family. Initially, my presenting symptoms were such high frequency partial seizures and memory loss. The attending doctor thought initially that I had New Onset Seizure Disorder. Symptoms increased to the point where I was on a 2 minute or less memory repeat cycle. I became delusional, seeing things floating around me that weren’t there. Seizures continued. I started to get violent, so much so that they had to restrain me to the bed.
I’m very fortunate that I have a brother-in-law who is a transplant surgeon in Indianapolis who deals constantly with immune suppressed patients. In a phone conversation with my wife he told her to have the attending doctor check for encephalitis. When told, the attending doctor did a 180 degree turn, and ran out of the room to get a neurologist. After much testing, and much consultation with a particular doctor in Spain, my neurologist believed that I had Anti-NMDA Limbic Encephalitis. While I had a form of encephalitis, they could not identify the markers which would make it conclusive (hence the “idiopathic”) but given my seizures, delusions, emotional outbursts, and memory issues the neurologist was sure it was encephalitis in my limbic system of my brain. He immediately started me on a program of drugs called IVIG (white blood cells from over 20,000 donors) which cost my health care system $20,000 a treatment, and I needed 20 of them. It took about a month before I was discharged from the hospital, and three more before I was somewhat functional.
I was left with three pressing concerns. (1) I was left with epilepsy. (2) I was left with about a 3 year “dark period” where my memories where at first completely wiped out. (3) My day-to-day cognitive functions were a fraction of what they were before the episode, particularly in the areas of memory and processing speed.
I’m proud to now say that after years of hard work my cognitive functions are about 80% of what they were, my seizures from the epilepsy are under control with the medication I’m on (Valproic Acid, Clobazam, and, yes, marijuana) and I’m back to driving. I have not had a relapse of the encephalitis. I’m even starting to remember the 3 year “dark period” and my current day-to-day memory is no worse than an average 51 year old.
I view it as a miracle. I’m extraordinarily lucky to get the help of my wife and her brother, my neurologist, and my friends and family who supported me. It warms my heart and makes me emotional (another thing encephalitis in the limbic system causes).
Because this all happened just after I sold my business I’m in the fortunate position that I don’t need to work any longer. I’ve decided to switch to the Giving Back mode of my career. I’m guest lecturing at schools (high schools, colleges, and universities) on what it’s like to be an entrepreneur and what I learned along the way, and serve on several board of directors or in other capacities, again in a voluntary capacity. I feel that life was so good to me, financially and health-wise, that this is the absolute least I could do.
Wishing all who this has impacted the good fortune I’ve been blessed with in terms of recovery.