Tell us about yourself?
Originally, I am from Iowa and I moved over to NY to take care of my grandchildren, it’s the best job in the world and I am so grateful I can spend so much precious time with them! I’ll be 60 in August this year. Baseball and college football are my passion - the Pittsburgh Steelers are my favorite.
Read more: The Pittsburgh Steelers’ Alan Faneca’s epilepsy story
What is your epilepsy story?
The diagnosis happened in 2002, one day before my 41st birthday. At the time I was experiencing lots of deja vu and it was scaring me, then as I was waiting for my friend at a restaurant, and I experienced a grand-mal (tonic-clonic) seizure. I was out cold.
From there, I was sent to a neurologist where we unsuccessfully tried 2 medications. I was sent to the University of Iowa hospital for 1 week where I was put on an EEG. They saw nothing. Second time round, they did see seizure activity but nothing was working. To be honest, I was feeling really discouraged.
One thing that was clearer though was that the epilepsy was most likely a result of scar tissue in my brain, but it is unclear where this came from. Finally, I went to the Mayo Clinic who offered for me to be part of a laser ablation trial. I jumped at the chance! Removing the scar tissue would be great for me. From then, I did not have any more grand-mal seizures and now I only experience mild seizures/auras.
My diagnosis is intractable and partial epilepsy with impairment consciousness.
Learn more: What is an aura in epilepsy?
Are you on epilepsy medications?
Yes, I am. I have a story about when I tried to suddenly come off it actually. One day, I thought the surgery had solved my issues, so came off the medications quick - which I now realize was a little stupid.
I ended up in the car driving to work to my old office in a different location. When I turned up, they said “What are you doing here?” and immediately knew something wasn’t right! I don’t remember any of this, not even the drive to the hospital for 4.5 hours after. I couldn’t even name the President.
Find out more: Driving with epilepsy
How has your experience been using the Epsy App?
I love it! I use it mainly to keep track of my medications and particularly love the medication reminders. My neurologist always wants to know about my condition, so the information I log is really important to share with them. I love being able to tell her how many seizures I had had, what days I had them, how strong they were. When I log I take notes and that helps me tell her the story of what’s happening with me. Remembering details specifically about my seizures such as the date and time are really important, Epsy App helps me track this.
Epsy App users can connect with their epileptologist or neurologist via Epsy Hub, the platform for healthcare professionals. Find out how to connect with your doctor here.
What’s your main message to others with epilepsy?
Being diagnosed later in life with no idea why, they told me I may never find the reason. It was a long path. But, it was a long path that you learn to live with. Don’t let it rule your life, you can learn to live with this. Something else that is so important is to seek the best care you can! This was a big step for me in my journey.
Learn more: How does the epilepsy experience change as you get older?
How can you share your epilepsy story?
If you would like to share your epilepsy story with the Epsy community, you can contact our team at email@example.com and our team will set this up for you.