Epilepsy Awareness Month/Purple Day

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
It still baffles me that over 50 million people worldwide have epilepsy or some type of seizure disorder and many people don't seem to know what to do. This alone has continued to disturb me as I navigated through public school, brushing off my mother's wishes of wanting to home school me (which would've been better and a lot less hazardous, more than likely). A lot of people have illnesses like Diabetes I & II and many people seem to get what this is, know someone that has it, and usually knows what to do - at least that's how it seems, but epilepsy has usually felt like some weird taboo. People flip out, get scared, don't know what to do, and there you are hanging in the balance.

I am going to try to reach out to people this year about epilepsy, try to step outside of my comfort bubble and go for it. We need a society that's more accepting to the idea that people do have seizures/epilepsy and that anyone with a brain can have one at any point in their life.

epilepsymemes.png
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
That memes pretty true.
I get the bus to work every day and often get taxis so have got to know the bus drivers / taxi drivers.

Most of them know I don’t drive and about 50% know about my epilepsy.
Once I was talking to a driver who had been driving me places for years (both where I live now and when I lived in my old place).
It came up that I have epilepsy and he said I don’t look like I have epilepsy
I looked at him and asked ‘What does a person with epilepsy look like?’

I had to explain mine are partial (focal) so I just lose awareness, stare into space or do something odd.
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
I couldn't agree with you more. After working 35 yrs. in public school and in Special Education. I found that the school
was putting students who had epilepsy in this area just because they had seizures. I had to teach the staff in the school
what to do and what to look out for if a student/staff had a seizure. They didn't believe me in the beginning until I told
the school nurse I thought a student may be having absence seizures. She told me I didn't know what I was talking about
and 2-3 days later the students went into a tonic clonic seizure and they came and got me to help the student. The nurse
went out the door. I wish we could get on NBC Dateline or 60 Min. and have a big 3 hr. show about epilepsy. The world
needs to wake up and realize we are just as normal as everyone else.

If you are really interested in speaking at a school or college check it out with the school principal or go online to
find a professor speaking about neurology and they may be interested in hearing your stories and you can teach the
students about it along with doing a couple of neuro tests with them. This is what I do each time.
Wishing you only the best and May God Bless You,

Sue
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
That memes pretty true.
I get the bus to work every day and often get taxis so have got to know the bus drivers / taxi drivers.

Most of them know I don’t drive and about 50% know about my epilepsy.
Once I was talking to a driver who had been driving me places for years (both where I live now and when I lived in my old place).
It came up that I have epilepsy and he said I don’t look like I have epilepsy
I looked at him and asked ‘What does a person with epilepsy look like?’

I had to explain mine are partial (focal) so I just lose awareness, stare into space or do something odd.
I've also heard that statement before. The, "You don't look like you have epilepsy." I, too, get confused by this. People have so many misconceptions that you should look really ill (I'm thinking they might be thinking about those that have other developmental delays that may have epilepsy or that people with epilepsy all wear a helmet or some type of head gear). I guess they must have something in mind when they mention that?

I've been told in life that I look so healthy and they wish they looked more like me, but I know that couldn't be further from the truth. I'd usually tell them, "No, you don't. You don't want to be me." and usually, I wish I could be anyone else that didn't have epilepsy.

It's good when you know your driver, that's for sure. I'm glad that you know quite a few of the drivers that take you out and about.
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
I couldn't agree with you more. After working 35 yrs. in public school and in Special Education. I found that the school
was putting students who had epilepsy in this area just because they had seizures. I had to teach the staff in the school
what to do and what to look out for if a student/staff had a seizure. They didn't believe me in the beginning until I told
the school nurse I thought a student may be having absence seizures. She told me I didn't know what I was talking about
and 2-3 days later the students went into a tonic clonic seizure and they came and got me to help the student. The nurse
went out the door. I wish we could get on NBC Dateline or 60 Min. and have a big 3 hr. show about epilepsy. The world
needs to wake up and realize we are just as normal as everyone else.

If you are really interested in speaking at a school or college check it out with the school principal or go online to
find a professor speaking about neurology and they may be interested in hearing your stories and you can teach the
students about it along with doing a couple of neuro tests with them. This is what I do each time.
Wishing you only the best and May God Bless You,

Sue
Wow, that is something else - to think they didn't listen to you when that whole thing could've been prevented, or at least better prepared for. It's a great thing that you were there for that student.

Thanks for the tips! :D I want to start trying to do this - reach out, and I think I have a few good starting points in mind with the tips you gave me.
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
It's good when you know your driver, that's for sure. I'm glad that you know quite a few of the drivers that take you out and about.
Theres another lady with epilepsy I know who gets the same bus I get to work. I used to see her on the bus in the morning sometimes but havent seen her since last year.

She's much louder then me, shes also had surgery and had the VNS (not many people have it in here in Australia) because her seizures weren't controlled. I've only seen her have 1 complex partial a couple of years ago but some of the bus drivers who know us both said theyve seen her have a seizure and they've had to call the ambulance. I think its more out of duty of care and often shes yelling and rude.

The driver who said I didnt look like I had epilepsy knew this otherlady and had seen her have a seizure so the fact the 2 of us have 2 totally different personalities yet the same medial condition.
Funny thing is a few years back I had to go over to the next town for an appointment and this guy was the driver. I had a simple partial seizure on the bus, he didnt see it as I was seated behind him. I just missed my stop and got off at the next stop and felt a bit off when I went to the appointment
 

C0urt

Veteran
Messages
2,689
Reaction score
51
Points
173
i have had several people say i was stealing from the government because i didnt look like i had an issue
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
i have had several people say i was stealing from the government because i didnt look like i had an issue
People like that make me mad 😡
They are the ones I’d like to spend at less a week in our shoes to see what it’s like.

I say a week because we could have a good day but a week there could be an off day.
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
Theres another lady with epilepsy I know who gets the same bus I get to work. I used to see her on the bus in the morning sometimes but havent seen her since last year.

She's much louder then me, shes also had surgery and had the VNS (not many people have it in here in Australia) because her seizures weren't controlled. I've only seen her have 1 complex partial a couple of years ago but some of the bus drivers who know us both said theyve seen her have a seizure and they've had to call the ambulance. I think its more out of duty of care and often shes yelling and rude.

The driver who said I didnt look like I had epilepsy knew this otherlady and had seen her have a seizure so the fact the 2 of us have 2 totally different personalities yet the same medial condition.
Funny thing is a few years back I had to go over to the next town for an appointment and this guy was the driver. I had a simple partial seizure on the bus, he didnt see it as I was seated behind him. I just missed my stop and got off at the next stop and felt a bit off when I went to the appointment
I'm glad you were okay on that ride. It's never fun to miss your stop. I'm horrified to go places alone a lot of the time and that kind of scenario is the reason. I try not to go places alone if I can help it. I'm fine with someone giving me a ride somewhere and dropping me off, but at least a friend or family member can make sure I'm okay first and I can reassure myself when I do feel okay. It's never an easy thing, I guess. I felt like when I had 10 years seizure free on medication the first time around, I almost forgot at times that I had seizures because it hadn't happened in so long. When I came off the medication and had gotten really ill and my body has been giving me a lot of grief over the past couple years, I feel like I lost my independence all over again. It's not a fun feeling.

I guess seizures affect our brains all differently and each person is different and we all handle trauma, bad life experiences, and chronic illness differently, too. Hopefully that other lady you mentioned has been doing all right.
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
i have had several people say i was stealing from the government because i didnt look like i had an issue
This type of garbage is awful :mad:!

I remember one time my husband and I had borrowed one of his parent's vehicles. They have a handicap plate on their vehicles because his mother was considered disabled. We ended up at a fast food place and ended up using the handicap spot and at times it was useful for me and my seizures to have that available. My husband also has a heart condition.

I remember my husband and I got out of the car and there was an elderly couple walking towards us. They said, "You're not disabled! You're young, you can walk!" My husband said, "Car has the handicap plate." We walked inside, the elderly couple proceeded to look closely at the handicap license plate and called the police. Police came, saw the handicap plate, and drove away - there wasn't much they could do. The elderly people were ticked off.
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
I remember one time my husband and I had borrowed one of his parent's vehicles. They have a handicap plate on their vehicles because his mother was considered disabled. We ended up at a fast food place and ended up using the handicap spot and at times it was useful for me and my seizures to have that available. My husband also has a heart condition.

I remember my husband and I got out of the car and there was an elderly couple walking towards us. They said, "You're not disabled! You're young, you can walk!" My husband said, "Car has the handicap plate." We walked inside, the elderly couple proceeded to look closely at the handicap license plate and called the police. Police came, saw the handicap plate, and drove away - there wasn't much they could do. The elderly people were ticked off.
We have disability stickers for cars here.
Both my parents have one, as they both drive and have 2 cars.
Mum has bad knees, she’s had 1 knee surgery so can walk short distances on her own but long distances still needs her Walker or stick

my dad has a few medical conditions.

I beleive they’ve had people say they don’t look disabled. My mum is the type of person who will gets cranky easily with comments like that (and telemarketers 😉) and if someone said that she’d soon tell them she does have a disability.
 

Sabbo

VIP
Supporter
Messages
1,774
Reaction score
134
Points
213
I know exactly what you're saying. People really need to be better educated about epilepsy. Classmates often thought I was pretending to be sick or faking things just so that I wouldn't have to do something.
I've tried to get government aid twice but was denied both times. They said seizures could be controlled with drugs. This was after a few of times of severely burning myself, & nearly falling onto the commuter train tracks--despite being on AEDs. I did get burned again after. I rely on my husband or my older son (if he's home) to take me where I need to go/get what I need.
I had a complex partial IN my neurologist's office while the nurse was taking vitals. It wasn't his regular nurse helping him, & she freaked out.
 

C0urt

Veteran
Messages
2,689
Reaction score
51
Points
173
my dad used to get grief about handicapped parking to, he had plates on his motorcycle and rode it until he couldnt anymore, originally he had a car fall off of the interstate on him, so he was definitely handicapped. and the motorcycle had a cane mount on it but people still said silly things
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
We have disability stickers for cars here.
Both my parents have one, as they both drive and have 2 cars.
Mum has bad knees, she’s had 1 knee surgery so can walk short distances on her own but long distances still needs her Walker or stick

my dad has a few medical conditions.

I beleive they’ve had people say they don’t look disabled. My mum is the type of person who will gets cranky easily with comments like that (and telemarketers 😉) and if someone said that she’d soon tell them she does have a disability.
Yeah, it's a rough thing to deal with. Some people don't get it until it happens to them, I guess :censored:
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
I know exactly what you're saying. People really need to be better educated about epilepsy. Classmates often thought I was pretending to be sick or faking things just so that I wouldn't have to do something.
I've tried to get government aid twice but was denied both times. They said seizures could be controlled with drugs. This was after a few of times of severely burning myself, & nearly falling onto the commuter train tracks--despite being on AEDs. I did get burned again after. I rely on my husband or my older son (if he's home) to take me where I need to go/get what I need.
I had a complex partial IN my neurologist's office while the nurse was taking vitals. It wasn't his regular nurse helping him, & she freaked out.
You'd think in a medical setting, the staff would be more level headed when it came to a seizure....especially in a neurologist.

Sorry to hear you've suffered so many injuries and dangerous situations. That's always rough.

It is incredibly hard to get government aid or disability. I'm pretty sure they wouldn't consider me disabled enough, but it's hard for me to get and keep a job.

It seems that having others think you're pretending to be sick or faking things is so common when it comes to seizures. It's awful, too! I remember times where people thought I was playing a prank on them or trying to be obnoxious to them and I couldn't understand what was going on until like a day later after I came out of it.
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
my dad used to get grief about handicapped parking to, he had plates on his motorcycle and rode it until he couldnt anymore, originally he had a car fall off of the interstate on him, so he was definitely handicapped. and the motorcycle had a cane mount on it but people still said silly things
It's pretty sad, really....that people are so judgemental about such things...
 

C0urt

Veteran
Messages
2,689
Reaction score
51
Points
173
actually this thread just reminded my of something that happened several times while i was phoenix last year, apparently. the funniest in its own way the 911 dispatcher didnt believe i was having an issue because apparently i sounded to calm on the phone and she thought it was drug seeking behavior, it was just a second degree burn when i finally talked some out there.
the other the emt gave my about a drug over dose after she told them in detail about what happening, but one was sure i was a drug addict. and i have had several get that look in the ambulance after i regained lucidity and started asking about my stuff, to find out they left it because i had to just be an addict,

second degree burns on the foot from a pot of burning water with noodles dropped on it, to many years of tech support i sound to calm on the phone http://instagr.am/p/CTOD5ncl-fB/
 
Last edited:

Sabbo

VIP
Supporter
Messages
1,774
Reaction score
134
Points
213
I've basically told my family not to take me to the ER unless my life is at risk. The last time my family took me in due to the extent of the severe third degree burns I had all over, something VERY odd happened. The hospital actually had a policeman come in & question me to make sure that my family wasn't abusing me!!
 

C0urt

Veteran
Messages
2,689
Reaction score
51
Points
173
it was years ago, someone asked me and my mom if she was was abusing it me, it may just be what comes up in their manual.
 
Top