why do ppl think I need extra help b/c my sz's

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Belinda5000

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I was talking to a woman I know yesterday who told me I should get medical alert because of my sz's since I'm not controlled ,. The woman has never seen me have a sz and would freak out if she did.She doesn't understand why I don't sit at home since I don't work and wait for ppl to pick me up .
Sh ethinks it's so easy to get a ride places she wouldn't give mea ride for anything.she's 65 atleast.
 
I wear a medic alert bracelet all the time because I'm in the same boat as you. But, I just had another CP at Starbucks the other day and two acquaintances saw me and didn't bother checking it. They know I have E because I've told them. I guess they imagined the big TC seizures when I told them I have "it". This SB is within walking distance from my home, but they insisted on giving me a ride back for fear I would hurt myself, I guess. It wasn't the first time I had one there, it's just some of my more "experienced" friends weren't there that day.

And what is really ironic, this woman's son is literally dying from brain cancer and she has witnessed some very mild SP seizures. She probably doesn't realize what they are.
 
when I said medic alert I should have been more precise it's for the elderly and it's a button you pushes in case of emergency you wear around your neck.
All my sz's aren't emergency's I have simple partial's complex partials's , tonic clonics,generalized sz's.
I don't wear any medic alert because I ws once told by a paramedic that they didn't look for it becaus ei came out my sz to fast.
 
Belinda5000 said:
when I said medic alert I should have been more precise it's for the elderly and it's a button you pushes in case of emergency you wear around your neck.
All my sz's aren't emergency's I have simple partial's complex partials's , tonic clonics,generalized sz's.
I don't wear any medic alert because I ws once told by a paramedic that they didn't look for it becaus ei came out my sz to fast.
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:ponder: Ok. Well, I wouldn't wear one of those type of medic alert devices, either. But my bracelet has come in handy several times when folks have called 911 for me. And I have the Medic Alert card in my wallet so when I'm in the post-ictal stage where I can't speak, at least I can understand what is being said and I can give them the card with all the info on it. But then, the bracelet lists all my conditions and the 800 # to call. It helps. And all my seizures aren't emergencies, either.
 
Belinda5000 said:
why do ppl think I need extra help b/c my sz's
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Some people just don't truly understand seizures. They're just ignorant of the differences
of types and severities of seizures. A medic alert bracelet would be good to wear. But having the Medic Alert System installed is a personal choice. If you feel safe enough in your home, don't get it. But if you feel you need that extra support to feel safe, than get it.

In short, it's all about your safety and what you need to feel safe. :)
 
I Use to have a medic alert bracelet and I have a necklace. If paramedics don't look it what's the use ihaving one.I'll turnaway an ambulance.I don't care for everyone to know my business anyway.My sz's aren't severe enough for me to go to the E/R everytime I have one. I know when I need to go and when I don't need to go and that's when I have hurt myself and I need stitiches and I'm bleeding profusely.

A lot of people are just idiots these are people I've explained over and over to what to do.
 
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Hey Belinda, Don't feel bad, it's human nature to try and help someone in need. Even if they don't know that it's ok. What if some day you will need help and no one is willing to help. Then we would surely be in bad shape, as a society.

:piano: :pop:
 
BIGMAN131307 said:
Some people just don't truly understand seizures. They're just ignorant of the differences
of types and severities of seizures. A medic alert bracelet would be good to wear. But having the Medic Alert System installed is a personal choice. If you feel safe enough in your home, don't get it. But if you feel you need that extra support to feel safe, than get it.
Click to expand...

When most people hear the word seizure they assume a tonic clonic and you fall to the ground shaking. I usually only have partials and people don't even know what they are.

I do wear a medic alert bracelet. But even if I were to get a medic alert system put in my house I probably wouldn't even know when to push the button because I generally go right into the seizure with no warning and I'm blacked out during the whole thing. I don't know anything that's going on while I'm having it. Most of the time I don't even know that I've had a seizure though unless there's someone there to see me have it.

When I come out of it and found out that I've hurt myself is when I'd know to push the button. Luckily I've never seriously hurt myself during a seizure. The worst I've done is fall out of the shower but for some reason I know to catch myself on the sink before I hit the ground hard. Don't ask me how I do that?
 
valeriedl said:
I do wear a medic alert bracelet. But even if I were to get a medic alert system put in my house I probably wouldn't even know when to push the button because I generally go right into the seizure with no warning and I'm blacked out during the whole thing. I don't know anything that's going on while I'm having it. Most of the time I don't even know that I've had a seizure though unless there's someone there to see me have it.

When I come out of it and found out that I've hurt myself is when I'd know to push the button. Luckily I've never seriously hurt myself during a seizure. The worst I've done is fall out of the shower but for some reason I know to catch myself on the sink before I hit the ground hard. Don't ask me how I do that?
Click to expand...

There are updated systems that have buttons & motion detection. The motion detection
reports falling motions to the company. They will call you to check on you. If you don't
tell them your ok, they send help.
 
My husband needed to pick up something from a friend today. He called his friend, who was at work, and told him that he would come get it there. His friend didn't want me to be left alone and told my husband that he'd drop it off after he was done working.

My husband laughed and said that I'm at home alone all the time and I'd be fine. I think they even got into a bit of a fight about me at home alone. His friend couldn't believe that my husband was going to actually do it.

BIGMAN131307 said:
There are updated systems that have buttons & motion detection. The motion detection
reports falling motions to the company. They will call you to check on you. If you don't
tell them your ok, they send help.
Click to expand...

I don't want to start an argument about this but when I'm having a seizure the motion detection system probably wouldn't even know. I'll usually just sit and stare. I'll get up and walk around the room and do normal things too. I loaded the dishwasher once while having a seizure not knowing I was doing it.

I hurt myself more when I'm not having a seizure than when I am. I've fallen, tripping over something - usually my own feet, and I know that it would have picked that up. I've picked up HOT things and screamed. Dropped things, burnt food and cut myself.

I have to comb my cat in the bathroom. She doesn't like to be combed so I have to go in there with the door shut so she can't run and hide. I was sitting on the floor and turned around. I lost my balance and banged my head on the bathtub hard. I know I defiantly would have gotten a call then!
 
:) No argument here. I was just saying there are newer systems that sense motion.

There were times during my CPS when I would also wander around. It looked like I was just walking around like usual. I could imagine how often that detector would go off when I bumped my toes and such. lol
 
Yesterday I was on my driving game/simulator in a F1 race and my wife came in with my meds. I had her set them down and I forgot them for an hour. I was in the middle of a race and could not stop. When I took them my wife came unglued and even called me a bastard. Anyway the point is my wife and daughter hover around me scared I will break. Otherwise I kind of get ignored. Settling into my new role.......................
 
I had a medic alert system in my last apartment two months back. Last year was the worst in recent years for my epilepsy and even when I was in some dire situations, I didn't use the service. We lose consciousness all the time, we go through weird things with our meds and seizures all the time. We can't be calling out the paramedics with every event, so how do we know when the right time is to call? In my case, I can't. Or, maybe more accurately, I won't. I don't want to live that kind of life.
 
kirsten said:
I had a medic alert system in my last apartment two months back. Last year was the worst in recent years for my epilepsy and even when I was in some dire situations, I didn't use the service. We lose consciousness all the time, we go through weird things with our meds and seizures all the time. We can't be calling out the paramedics with every event, so how do we know when the right time is to call? In my case, I can't. Or, maybe more accurately, I won't. I don't want to live that kind of life.
Click to expand...

I have never even considered something like that. My complex partials were not severe enough that I needed help of any sort, and the few tonic-clonics I have had come on so quickly that I would have no time to press a button or do anything.
 
That's the point, really, Arnie--when bad stuff could happen, we're probably unconscious. The alert system came with the building. I wouldn't pay for something like that myself.
 
morons who work at hospitals

I had some moron holding me down when I was having a simple partial.When I came out of the first one she told someone I said I'd hAD partial sz.I'd gone straight into another simple partial.


When I came to I got all over her for holding me down.She had made real sore and I told her she needed to learn what to do when someonehad a seizure and you never hold someone down and all she could say is she didn't want me to hurt myself.


They don't teach anyone anything on what to do if someone is having a sz when your in the hospital.:agree::twocents:
 
I am fortunate enough to a stubborn ars that my family knows to back off but other people are just all over the place between funny, useless and hurtful.

Some treat you like a fragile egg and then you have those that think you sit on people. That is why I push and push to educate people until I am purple in the face. At least they are trying.


My favorite was a ER DR. that got me 3 days of percocet to help with pain. My wife and I had a joke where we called percocet the wonder drug because it helped me manage pain after a grand mal so I could go to the bathroom on my own. He was 15 ft. away when I told her 'ahhh percocet the wonder drug'. The DR turns and says to me 'Sir Percocet is not a cure for Epilepsy!' I would tell you what happened after that but let's just say I am very intolerant after a grand mal.
 
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