practical question

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CalvinDurden

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My seizures are not yet under control and I am wondering how people deal with the amnesia that follows one. When I have a seizure, I have complete amnesia. What should I tell people I work with to do? I was thinking I would give them my address and a list of people they can call to either bring me home or just meet me there and be with me and a note that they can show me so that I will go with that person. Does that make sense? I feel like I need a plan in the event I have one at work.

Any thoughts would be so appreciated. I am not trying to be an alarmist but prepared.
 
I would recommend talking to your doctor about some practical ideas on how to be prepared in the workplace. At the very least, it seems like informing your coworkers that you have epilepsy, and then maybe typing up a sheet like you described and hanging it in the lounge for people to have access to at all times. Also, wear medic alert jewelry with important contact info, in case you become unresponsive. That would be my guess. I know that asthma patients always work out an action plan for what to do when their asthma gets bad. It seems like people with epilepsy should have an action plan also.
 
I plan to talk to my doctor but was also hoping to get advice from people who had been through it. My time with my doctors has been all about figuring out what is causing this. I don't feel comfortable hanging my personal information in a public place but can give it to a few people I am close with. I should note that I work out of a collaborative office space so we don't all work for the same company. I have talked to the office manager and will speak with some people there who are friends.
 
I understand the reluctance to share what is going on with too many people. I think we have all been there.

As I've journeyed along with this whole thing, I have become more transparent with people, but I think that is just because I am used to it now. And for me, it's much less embarrassing when people know beforehand. Then when I do have a seizure around them, they know and I know they understand, and it's just a little easier for me to accept that way.

You might consider posting general info rather than specific. When I was working, we had a paper posted on what to do if someone has a seizure. It didn't indicate who in the workplace had epilepsy, it was just general reference in case of emergency. I was comfortable with that, knowing people were equipped without it all being focused on me.

I hope your doctor has some good suggestions for you! I definitely recommend the bracelet though, or if you'd rather not, you could get a wallet card with your doctor info and various contact info for emergencies. You could, as you said, just tell a few friends that the card is there so that they know where to look for it. Or, alternatively, you could include that info on the action sheets to give to your friends. But away from the workplace, it's definitely a good idea to have the jewelry, or shoe tags or something on your person to help inform first responders. A relative of mine with a serious medical issue wears medical dog tags, as a more discrete option.

Oh dear, I have the late night ramblies. I need to go to bed!
 
I have plan that I made up with my manager and the HR department and have a couple of co workers that know what to do and who to call if need be. I also wear an ID bracelet which has a USB drive thingy if there is more info needed.
 
Love the idea of the bracelet with the USB! We have a program here called ICE. It is an app to download to your smart phone that has all of the medical info on it. I have also let my co-workers know what to do in case of a seizure. Best of luck to you!
 
When I worked I told 3 people about my E. and gave them my husband work no. and my Neur. no.
mY husband was called twice when I had a seizure.

When my mother got sick suddenly, my sister called my work, they didn't tell me they 1st. called my husband and waited for him to come to my office before my mgr. came with him to tell me.
 
Thanks for all the thoughts and suggestions. I just like having a plan. I am going to give an info sheet to a few people at the office. And as reluctant as I have been to get a bracelet, I will and wear it at least until this is controlled better. I love the smart phone app and the USB on the bracelet! My high tech approach is Speak It! on my iPad. If anyone here has problems speaking after, it's good for that. I typed in a bunch of phrases I say a lot (and an explanation).

And I am so glad I am not the only rambler here. I find typing really therapeutic so I appreciate it when other people write a lot.

PS. Thank you again for just being here. This has been so helpful.
 
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