most of my family decided that I'm faking epilepsy and no longer speak to me. While on a trip, my daughter's friend, who was with me in case I needed help, left me on the floor to die when I had a terrible seizure. It lasted 3.5 hours and she never got me any help at all. That was almost 6 years ago and none of them have spoken to me since. It was devastating to me.

@A MyEpilepsyTeam Member keep it simple. i have partials to grand mals seance i was a kid. the students were trained to set me down on the ground and put me on my side. i was in 1st grade when it happen and immediately the kids new what to do. so when your kid remembers stuff, teach um the ropes.

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A MyEpile...

@A MyEpilepsyTeam Member
Kudos to your mother and family! My parents are dead now.
I remember a quote during a lecture while studying to be an OT. “Families of people with handicaps or disabilities are either functional or dysfunctional. One or the other.” Yours, Margery, is a functional family.

I actually laid on the ground and them roll them over.

We started with the more serious discussion: what they look like, what my brain is doing, why I forget things, etc. After, we came up with jokes. My 10 year old boy says Daddy is doing the chicken dance. My 13 year old girls calls me big brain. I taught my son to roll me over and get to my phone, if I were to fall to the ground during a seizure. We actually practiced it. My daughter is a little more in tune and says she feels them coming. Hope this helps but I believe being forward and able to joke about it are both important.