seedsaver,
I was diagnosed when 17 y.o. in '74. It uncontrollable if been to NIH and hospital after hospital in a few cities. Don't drive, I just walk to bus stops and other places. I've never had an aura, maybe I'd drive and pull over till it was over. Mine are complex-partial seizures that happen instantly. If I'm at a bus stop, someone in a car usually calls 911 on their cell phone and asked for an ambulance, I become conscience and a paramedic says, "you had a seizure, get in the ambulance". I don't need to receive this type of order, when he could have seen a Medic Alert on me, or asked a few questions before deciding that it was an emergency. Then I'm put in one and taken to a hospital for no reason. But hospital will bill is sent, physician will send one and also the fire department sends one for ambulance service. All of this has happened a few times and I doubt that it will end I used to this crap it now. My ability to remember isn'
should be, its all the drugs that have passed through my mind along with the unsuccessful surgery on that was supposed to remove the focus of my seizures, well the left temporal lobe is gone but it looks like the spot is behind the lobe. I haven't tried to have another surgery again and without an aura I don't that a VNS would be of full use. How could I use the magnet if a don't know when to.
Tim Baldwin
____________
From: seedsaver1949 <seedsaver1949@
To: epilepsy@yahoogroup
Sent: Monday, October 26, 2009 6:37:58 PM
Subject: [epilepsy] about 60 minutes
It was an OK show. I am always disappointed when people with epilepsy are all lumpled together as unable to function in society without help. I realize meds are help but only talking about people who need implants or have a susbstantial amount of brain damage, usually from seizures as a young child, misrepresents the disorder.
If there are so many people with epilepsy then I can only surmise most of us quietly lead our lives, taking our meds and hardly ever having a seizure. We don't tell anyone except people we can really trust (as I do) so the statistics are probably way off.
I know there are people in this group who don't have auras and have major difficulties in the world. Folks who just black out (which scares the heck out of me)and others who have auras and can get out of harm's way. I also know there are people here who are trying to cope with not being able to help their children with epilepsy. There are also people who are really mad at the world for foisting this on them (yes, I did read your entire post). My point is that the ONLY commonality we have with our disorder is that it is called "epilepsy."
So just once I would like to see a news story that shows the whole story. We are just people, young and old.
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