I attended an epilepsy conference in Charlotte on Friday, October 23. It was presented by the Epilepsy Alliance of North Carolina. Patricia Gibson arranged for this enlightening event. I appreciated every minute. Community is key.
The presenters were all doctors working in fields that included epilepsy. The topics included the basis of epilepsy, co- morbidities in epilepsy, seizure surgeries and epigenetics in epilepsy.
Each speaker had personal experiences with seizures in some way. This fact made their presentations more personal and empathetic.
I had the chance to meet parents of children with epilepsy. One father said he felt like his family was on an island. Another mother cried when discussing her daughter’s journey with medication failures. The woman I sat beside had two daughters with epilepsy.
I gave away all the copies I had of Seizure Mama and Rose by Flower Roberts (my author name).
I did give the dad a pep talk. He was doing everything he could to help his youngest son. He showed me his calendar full of seizures and numbers. It looked like months of Rose’s life when she was younger.
Rose did have her first seizure in a long time at work last week. She forgot to take her morning dose of medications. A period of non-driving will follow.
We know the ropes. We know the hoops. Nothing new here. The fear is back for a bit. There may be some adjustments of doses.
I wanted to tell parents it gets easier… except when it gets harder.
Hang in there parents!
You are not ALONE on your epilepsy island. There are many of us with you.
Seizure Mama/ Flower Roberts
