My daughter ( Melody ) was diagnosed with Epilepsy when she was 8 years old and in 2015 was re-diagnosed with Genetic Generalized Epilepsy and Photosensitive Seizures, Melody currently takes medication 2x a day to help control her seizures, plus wears glasses with special lenses to help/protect her.
We found out about SUDEP approx. 2 years ago (2017) through a social media post , never heard about it before & never spoke about before it with any of my daughter’s 5 neurologists or 2 family doctors. I talk about why you should know about Sudden Unexpected Death in Epilepsy on my website linked here (https://lorrieforseth.webnode.com).
Each morning I wake early and put her seizure medication in a little cup beside her nightstand so she can take it when she wakes before noon each day. In the evening I remind her to take her medication and again before midnight. It’s important that she remains on this medication regiment ( One of many ways to prevent Epilepsy seizures). She has problems with memory sometimes, so as a parent if I can lighten the load by helping her with her medication dosage, I’m happy to do so each time (She is NOT a burden).
For my daughter Melody she is unable to attend events that might contain strobe, laser, or flashing lights (This includes some sporting events, concerts, fireworks etc. ) and sometimes simple things like Christmas tree lights , emergency vehicle lights can/could affect her, For Melody, if she was to attend a movie and the movie screen begins to flicker, she could and has had a seizures in the past. While Melody’s sister can attend concerts ,movies etc, Melody cannot due to seizure risk.
As a parent I try to be there for both daughters. There are many pro’s & cons on this journey and I’m still learning everyday.
All that being said, Melody is a talented artist, who is a very kind person. As a parent I have noticed over the years many changes, decline in friends etc , the true friends always keep in touch.
“Telling someone with anxiety to just calm down is like telling someone with epilepsy to just stop having a seizure.” – Unknown
“To be yourself in a world that is constantly trying to make you something else is your greatest achievement.” – Ralph Waldo Emerson