Epilepsy Newfoundland and Labrador’s Purple Day Ambassador 2021:
Tim Spicer’s Story:
I was diagnosed with epilepsy at the age of 31. Now looking back today, I suspect that I have had epilepsy my entire life that went un-diagnosed. Born in Hamilton, Ontario, I am the youngest of 5 boys. At the ages of 2 and 8, I had grand-mal seizures that my parents and doctors attributed to bladder infections. I can remember having “feelings”
throughout my lifetime; however, when I mentioned it to my parents, they didn’t take me seriously.
They simply shrugged off my “feelings” to being “happy” or “sad”. I must have learned how to hide them, and the after-effects, well, sleepiness, confusion, difficulty talking, because no one in my family, including my brothers, noticed I was acting “weird”, nor did anyone at school, or later at work. The first person to notice was my wife when we were dating. She noticed I made a chewing motion, and I often held my hand still in mid-air, or ran it along my other arm. I told her about my “feelings” but since they only lasted 1-2 minutes, we both felt there was nothing serious to worry about.
It DID become serious on October 24, 1995, when I had a grand-mal (generalized tonic clonic) seizure just before midnight when our first
daughter was 17 days old. The doctors in emergency attributed it to lack of sleep due to having a newborn. I was referred to my first neurologist who subsequently diagnosed me with epilepsy. It turns out my “feelings” were actually Complex Partial Seizures now known as Focal (Onset) Impaired Awareness Seizures.
That began a long road of discovery to find the right “mix” of medications. I went through many tests including CT Scans, MRI, and EEGs which all came back normal. It wasn’t until 12 years later, when I had a
seizure during a Sleep EEG that I learned my seizures could actually be as long as 8-10 minutes.
In 2009, we moved from Ontario to Newfoundland and Labrador. This resulted in going over 2 years without seeing a neurologist. In 2011, my new neurologist and I finally seemed to find the right medications as my seizures dropped from a recorded high of over 65 a year to less than 15 per year.
As my seizures dropped, unfortunately, other issues began to arise. I was diagnosed with General Anxiety Disorder, Obsessive Compulsive Disorder, Social Anxiety Disorder, Major Depressive Disorder, and Dysthymia. I attempted suicide twice in 2017, and 2019.
Through treatment of depression, my psychiatrist has been able to optimize my medications by prescribing some that treat both seizure and depression disorders. It has been difficult undergoing so many medication changes, however, I am pleased to say that I have been seizure-free for over 2 years. My mental illnesses continues.
In 2011, I began actively volunteering on Purple Day for Epilepsy Awareness. Each year, I coordinate events including the declaration of Purple Day with my town mayor, reading an epilepsy story at Children’s Story time at our library, handing out bookmarks, tattoos, and ribbons. I hang posters in my community and have made presentations at my church. Many community groups now wear purple on March 26th.
I served on the ENL Board of Directors 2015-2016. One of the highlights of my journey was when I visited Epilepsy Ireland in Dublin in 2016. We compared notes and ideas and I brought some resources back to ENL.
Both of my daughters have been Purple Day champions for raising epilepsy awareness at their schools. They actively fundraised each year during awareness events. Our collective efforts were recognized in an article in the Western Star in 2013. Both were recipients of ENL’s Family Scholarship, one in 2013 and the other in 2018.
Because of the many challenges I have faced, I am open to discussing my disorders and hope that my story will inspire others. I would like them to know you can’t stop striving to be seizure-free without finding the right medications, being open to testing, and gaining new knowledge.
I am asking you to join with me in talking about Epilepsy and doing your part to help Epilepsy Newfoundland and Labrador bring awareness to our province.