1. < Epilepsy & Seizures
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What if others say they're afraid you'll have a seizure?

Posted by Dan Noyes @dannoyes, Jan 13 12:30pm

A friend recently came to town and he wanted to get together for lunch. On the way to the restaurant, he looked at me with trepidation and asked, "What do I do if you have a seizure?" Many of us are so used to epilepsy we don't even think twice about what it must be like for our family and friends to be with us. During the holidays, I once again saw some of my family giving me some distance, especially while I had a mini-absence seizure at Costco (not convulsive, but...well, you know). I'd love to know how you have handled this, especially getting together with people you haven't seen in ages.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for tchandos
tchandos | @tchandos | Feb 4 8:53am

I’m coming at this from someone who lives with epilepsy and doesn’t have epilepsy. Knowledge is power in my opinion. The unknown is scary. That said, I will never get used to my son’s seizures. He had a sudden onset right before his last year of high school and had 18 tonic clonic seizures in about 5 mos time before the right combo of drugs got on board.
I won’t lie, it’s scary to watch a loved one fall to the ground and shake about and make scary noises. Thankfully he has been seizure free for 2 years and I’ve settled a bit but I still get a bit of a panic if I hear an odd noise.
I can’t imagine having to be the one who is actually living with this disease, but I love the info on the phone case, I bet you could get a case made with the note. My son wears a medic alert bracelet and, quite frankly, I’ve told him he doesn’t have to tell everyone he meets, if he doesn’t want to.

I’m sorry if people have lost friends over this, I can only imagine it was out of fear, but it still stinks!

Tracey

REPLY
1 reply
Profile picture for tchandos
tchandos | @tchandos | Feb 4 8:34am
In reply to @santosha "Hi Everyone, I've just finished the first draft of a card I'm creating to carry with..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi Everyone,
I've just finished the first draft of a card I'm creating to carry with me when I'm out alone and starting to have a focal seizure. I'd love your thoughts on whether it's clear, reassuring, and easy to follow.
Here's what I have so far:
______________________________________________________________________________________________________________
Hello, I'm Chris
What's happening:
I'm having a simple focal seizure (non-convulsive), which lasts a few minutes. I can't speak right now, but I'll return to normal soon. There's no danger, I just need someone by my side.
How you can help me:
- Call: Marc 11-99161xx or My Building's Front Desk 11-5052 xx and tell them where I am so they can come get me.
- Stay with me until I recover or someone arrives.
I rarely have convulsions, but if it happens:
- Turn me on my side, support my head with something soft, and let the seizure run its course
- DO NOT restrain my body movements
- DO NOT put anything in my mouth
On my left arm, I'm wearing a bracelet with all my information.
From my heart, thank you so much for being here with me in this moment!
__________________________________________________________________________________________________________
I'm planning to print this on business-card size to keep it in my pocket and also attach it to the back of my mobile.
Thank you so much💜!
Chris

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@santosha this is great!

I have something similar on our fridge for our son since we tend to have house guests frequently

Tracey

REPLY
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Feb 4 5:06am
In reply to @royanthony "@santosha I've given this a lot of thought. Based on my career tasks (not medical), I've..." + (show)
Profile picture for royanthony @royanthony

@santosha I've given this a lot of thought. Based on my career tasks (not medical), I've experienced legal implications (again, not medical) regarding provision of too much information. I'd like to share this topic with you in the next few days, so you might want to hold off more work on your draft. Okay?

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@royanthony
Hi Roy!
I'd love to hear your thoughts on this—please feel free to share whenever you have a moment.
Have a nice day!
Chris

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royanthony | @royanthony | Feb 3 3:42pm
In reply to @santosha "@royanthony Hi Roy! I really appreciate you taking the time to look it over and jumping..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@royanthony
Hi Roy!
I really appreciate you taking the time to look it over and jumping in to help make it more concise!
Last week, I wasn't feeling well and had to pause my activities. So I didn't get a chance to work on the card yet. I'll pick it back up this week and keep you updated.
Thanks again for your help!
Chris

Jump to this post

@santosha I've given this a lot of thought. Based on my career tasks (not medical), I've experienced legal implications (again, not medical) regarding provision of too much information. I'd like to share this topic with you in the next few days, so you might want to hold off more work on your draft. Okay?

REPLY
1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Feb 2 7:49am
In reply to @royanthony "@santosha I understand what you mean by Draft. I did a quick look. I see a..." + (show)
Profile picture for royanthony @royanthony

@santosha
I understand what you mean by Draft. I did a quick look. I see a number of adjustments that will decrease words and/or whole phrases. We may develop something that will fit on a business card; small font but it will get the point across. Can't wait to help.

Jump to this post

@royanthony
Hi Roy!
I really appreciate you taking the time to look it over and jumping in to help make it more concise!
Last week, I wasn't feeling well and had to pause my activities. So I didn't get a chance to work on the card yet. I'll pick it back up this week and keep you updated.
Thanks again for your help!
Chris

REPLY
1 reply
Profile picture for royanthony
royanthony | @royanthony | Jan 29 4:13pm
In reply to @santosha "@royanthony Hi Roy! I haven't heard from you in a while. Hope all is well with..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@royanthony
Hi Roy!
I haven't heard from you in a while. Hope all is well with you.
You're right—this might be too much for a business-card size. I'll check with a print shop this week to see what solutions they can offer.
Any other thoughts on the draft I shared?
Chris

Jump to this post

@santosha
I understand what you mean by Draft. I did a quick look. I see a number of adjustments that will decrease words and/or whole phrases. We may develop something that will fit on a business card; small font but it will get the point across. Can't wait to help.

REPLY
1 reply
Profile picture for royanthony
royanthony | @royanthony | Jan 29 4:04pm
In reply to @santosha "@royanthony Hi Roy! I haven't heard from you in a while. Hope all is well with..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@royanthony
Hi Roy!
I haven't heard from you in a while. Hope all is well with you.
You're right—this might be too much for a business-card size. I'll check with a print shop this week to see what solutions they can offer.
Any other thoughts on the draft I shared?
Chris

Jump to this post

@santosha does your word draft in your reply above mean the list of items you originally showed. I'll be glad to help you.

REPLY
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Jan 28 3:41am

@royanthony
Hi Roy!
I haven't heard from you in a while. Hope all is well with you.
You're right—this might be too much for a business-card size. I'll check with a print shop this week to see what solutions they can offer.
Any other thoughts on the draft I shared?
Chris

REPLY
2 replies
Profile picture for royanthony
royanthony | @royanthony | Jan 27 5:50pm
In reply to @santosha "Hi Everyone, I've just finished the first draft of a card I'm creating to carry with..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi Everyone,
I've just finished the first draft of a card I'm creating to carry with me when I'm out alone and starting to have a focal seizure. I'd love your thoughts on whether it's clear, reassuring, and easy to follow.
Here's what I have so far:
______________________________________________________________________________________________________________
Hello, I'm Chris
What's happening:
I'm having a simple focal seizure (non-convulsive), which lasts a few minutes. I can't speak right now, but I'll return to normal soon. There's no danger, I just need someone by my side.
How you can help me:
- Call: Marc 11-99161xx or My Building's Front Desk 11-5052 xx and tell them where I am so they can come get me.
- Stay with me until I recover or someone arrives.
I rarely have convulsions, but if it happens:
- Turn me on my side, support my head with something soft, and let the seizure run its course
- DO NOT restrain my body movements
- DO NOT put anything in my mouth
On my left arm, I'm wearing a bracelet with all my information.
From my heart, thank you so much for being here with me in this moment!
__________________________________________________________________________________________________________
I'm planning to print this on business-card size to keep it in my pocket and also attach it to the back of my mobile.
Thank you so much💜!
Chris

Jump to this post

@santosha How do you get all this info on a business card physical dimensions?

REPLY
Profile picture for Randy Shields
Randy Shields | @randallshields56 | Jan 25 12:21pm
In reply to @randallshields56 "@marianne72 biggest issue i had was different types of seizures. my first ones and i did..." + (show)
Profile picture for Randy Shields @randallshields56

@marianne72
biggest issue i had was different types of seizures. my first ones and i did not know what they were, are called ground seizures. learned that just yesterday. since then i have had numerous types. Focal ones are for me the hardest. usually takes me three days of resting in bed to get back to normal. Thank you for your posting. and the like.

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thank you for the like.

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