What NOT to do.

[saul3903]

I've been a FOSWE (Friend Of Someone With Epilepsy) for a few months now. I don't ask many questions here, mostly because I'm really not sure where to start. My E friends answer most of the questions I have, so mostly I just read other people's questions and answers here on COE.

One very broad question that I think is better asked here, is what should someone NOT do as a FOSWE? I understand most of the basics as of right now...I think...Don't touch the person during an episode, never make jokes relating to the condition. That last one is a hard habit for me to break, I was diagnosed with Autism when I was very young, and even though I've moved past most of the problems that come with it, over the years I have made many friends with similar conditions. We have rarely thought twice before calling each other "mental" or other things in fun (my friends are pretty unusual that way, conditions or not). Anyway I often forget that most people are extremely hurt by those kinds of comments, friends or not.

But I'm getting off on a tangent. Could anybody tell me some things that you NEVER do with an E friend? Don't consider anything to be too obvious.

 

[elizzza811]

I know I wish my neighbor wouldn't be calling an ambulance every single time I seizure in front of her. I end up spending 4 or 5 hours in the ER. And though they seem to have no qualms about running a chest x-ray on me because I'm a smoker (even though my breathing was fine), they've yet to run a single EEG on me in the ER when I am most likely to be showing abnormalities.

With regards to your autism though, these might interest you...

Mercury + Electromagnetic fields (EMF) = Autism?
http://www.dirtyelectricity.ca/autism_and_emf.htm

Autism may be Linked to Electromagnetic Radiation Levels In Mother’s Bedroom During Pregnancy
Pilot Study Finds Over 20x Higher Microwave Power Density Levels in Mothers’ Sleeping Locations During Pregnancy (scroll):
http://electromagnetichealth.org/media-stories/
http://www.reuters.com/article/2010/09/13/us-mercury-autism-idUSTRE68C1CZ20100913

 

[epileric]

With regards to your autism though, these might interest you...

Mercury + Electromagnetic fields (EMF) = Autism?
http://www.dirtyelectricity.ca/autism_and_emf.htm

Actually a lot of scientific studies have been done to see if mercury has a connection to autism when they tested numerous vaccines & nothing has been found. (Thimerisal=mercury)
http://www.ncbi.nlm.nih.gov/pubmed/20837594

[URL="http://www.reuters.com/article/2010/09/13/us-mercury-autism-idUSTRE68C1CZ20100913"]No link found between vaccine mercury and autism
[/URL]

I'm also very skeptical about The Huffington Post. Everyone that works there works for free which makes me if they have ulterior motives other than money. Also, if they're working for free how good are they in their profession anyway?

 

[valeriedl]

Make sure that when the person is having the seizure will not hurt themselves, so sometimes you might need to touch them or take something off of them that they could be hurt with. Just don't hold them down on the ground or pressed up against a chair.

I know when I have seizures I like to grab things and "play" with them. My husband has had to take things away from me many times.

As far as laughing about the seizures that someone has it depends on the person. We always laugh about the goofy things that I do or say while I'm having one. My husband always makes fun of me because I can never remember his name when he is asking me the simple questions that you ask a person to see if they are coming out of it and if they are ok.

For example - What is my name, where am I, if the cat is around he'll ask me what his name is but every time my husband asks me who he is I am at a complete blank. I actually said that he was one of my exboyfriends once. He know's I'm out if it when I know who he is.

 

[elizzza811]

I don't know much about who wrote the articles I posted above, but I did read a couple of books by two-time Nobel Prize nominee, Dr. Robert O. Becker ('Cross Currents' and 'The Body Electric'), and he truly believed that dirty electricity/microwaves were dangerous - and that's what he studied his entire life. So that's enough for me to believe that there is at least some truth to the autism-EMF link, some connection. I'm 46 and I never heard of autism until maybe a decade or two ago, right when the cell phone/wireless boom actually boomed. Coincidence? Perhaps. But I kind of doubt it.

Also, my ex-husband, who spent 6 years in the Navy working on radar and later went on to become a heavy cell phone user, had a brain tumor removed a few years back. And yes, it was on the side of his head against which he'd hold his phone.

So you'll have a hard time ever convincing me EMFs are safe, that they have nothing at all to do with my seizures, etc..., but you can try. Especially since I could actually feel the EMFs from this computer, my cordless phone, etc...a few years back.

Back to the original post though...I thought of something you should do in the event of a seizure...check to see if the person is smoking a cigarette and remove it from the person's hand, otherwise, it will eventually burn down to their fingers!

 

[Nakamova]

Aside from not making seizure jokes (unless you have their permission), anything goes based on the kind of friendship you have. I'll sometimes ask my friends to keep my seizures private and not spread the word if I've had one -- unless I give them the okay to do so. Some of my friends are on my emergency contact list, and/or have contact info for my family members, which is great. Other ones make a point of calling to check on me from time to time (I live alone). So I guess my list has more of the positive things that a FOSWE might do as opposed to the negative things that a FOSWE shouldn't do.

 

[knothing]

Do not have an inquisition about their seizures. In other words leave it up to your friend to let you know the types of seizures they have. Just like anyone else you cannot pry information out of the unwilling you can only alienate them. Be as involved as you can and want to be. I have found that very few people around me want to help or even want to know anything but I still make sure they know about it so nobody does anything stupid like try to shove a wallet in my mouth or call for medical help when it is clearly not needed.
As far as joking goes it all depends on the person. I got called 'twitchy' and I stopped that. I make some jokes and people laugh but I never call myself a name. Joking is just hard to work with because funny is funny until it is not funny and most times you do not know until it is too late.