My cousin, 27 years old, was diagnosed a few weeks ago with adult onset epilepsy. The siezures were bad but are improving. My biggest question(please forgive me) is if adults with epilepsy can ever be independent and live on their own?
Her mother is convinced she's debilitated forever. I feel the prognosis is better. I suspect it may be the pituitary tumor (100% operable) and stress causing the siezures. Her mother thinks it's not and that this is terminal. We have very different opinions. We are moving her out of mom's and into mine this weekend.
I don't want this to disable her. She's strong and independent. Not to mention stubborn as hell.
Do people with epilepsy live on their own? Is it possible to be safe without someone following you around and checking on you every 5 minutes? (instruction from the mom)
Any feedback is welcome.
I was diagnosed at age 38 and have always lived on my own. It definitely takes some adjusting. The worst adjustment for me was having to deal with people (my mom mainly) like what your cousin's mother sounds like.
The seizures themselves are scary enough without having hyper-reactive nutjobs around to have to deal with. What your cousin's mother needs to figure out is that now your cousin still reserves the right to not answer the phone. Your cousin still has the right to have bad moods and a bad day without it meaning she is has gone into a psychotic seizure. Your cousin still has the right to be independent (though this can take some adjustments, not driving for example).
Having people around me reminding me continually that I'm in a compromised state and babying me is about the worst thing that happens to me now, aside from the seizures, when I really do need babying.
It sounds like your cousin's mom needs to do some research into what seizures look like, the phases of tonic-clonic seizures, and the times when it is best to interact with someone having a seizure.
DO NOT try to grapple with and restrain someone having a seizure - for one example.
DO NOT get in their face and start screaming in panic - for another example.
there are videos on YouTube of people going through tonic-clonic seizures and some of them show people interacting with them.
I would emphasize leaving the person alone.
As long as there is no immediate danger (near fire, kicking babies, etc.) it is best to just monitor the person during the seizure to be sure it doesn't last more than a few minutes, and then make them comfortable by putting a pillow under their head.
Even if they're in a public place it is best to let the seizure come to a complete end and then let them lay there for a while to let their body rest it off.
I've had seizures where within a couple minutes I've been able to walk on my own, some where I've slept for many hours afterward.
This message board has been of great assistance to me - whether ranting or learning new info.
I'd recommend you direct your cousin here or to a similar board where she can get some info and feel not so bizarre, because times for me have been scary, just coping with the idea of not feeling in control of oneself anymore. But that's not the case at all - it's just that I happen to control a social situation every now and then without even knowing! And then the big blue people (i.e. paramedics) come every so often and I magically wind up in an ER somewhere.
She ought to get a medical alert bracelet. I just ordered another one after I had my first seizure solo in public. It was like losing my virginity all over again - on a train full of strangers! Whee!
