Epilepsy Education

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi Folks,
I wanted to let you know that on March 24th I will be speaking at a college about epilepsy and personally I feel
many people don't know that much about it and sometimes they are frightened when they see a person have
a seizure. If there is anything that you would like the college students to know about epilepsy please feel free
to share it with me and I will be sure to tell the students about it. Thanks for your time.

Wishing All of You only The Best and May God Bless You,
Sue
 

valeriedl

VIP
Moderator
Supporter
Messages
4,780
Reaction score
175
Points
218
Let them know there are more than one type of seizures. A description of what happens during simple partial and complex partial seizures. If you say the word seizure then they picture someone falling to the ground shaking like crazy.

Maybe different ways that can help keep your seizures - medicine, surgery, etc. Epilepsy can't be cured. People my stop having seizures but they still have epilepsy.

I'm sure other people will have some more suggestions.
 
Last edited:

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi valeriedl,
I make a point to teach the students about all the types of seizures , what to do if a person has a seizure and
I also tell them about the treatment and surgeries that can be done. Thanks for your info. I really appreciate it.
Wishing you only the best and May God Bless You,

Sue
 

Army Vet

Stalwart
Messages
198
Reaction score
90
Points
78
valeriedl took the letters right off of my keyboard. Definitely let them know that there are different kinds of seizures. Whenever I start telling them about my seizures they immediately think of what I call a "Hollywood" seizure. I call it that because the people see it "acted out" and immediately correlate falling down and shaking as any and all seizures. Nope, there are many other kinds and different ways they look.

Feel free to tell them about VNS's and what they do and how they operate and have magnets (Hey, I'm biased, I have one). And of course any other surgeries/ways of fighting it. It might take several attempts for the neurologist to find something abnormal on EEG's. I finally had something pop up while at the doctor's office as opposed to others that came back normal.

I would also try and tell them what are the signs and symptoms that come with it other than falling down and shaking (ie non-responsive; chuckling: blank stares; VERY tired after having one; bad memory; loss of words/can't think of what to say; feeling "lost"/where am I?). Who knows, maybe a person in the audience might be experiencing it, but has no idea what's going on 🤷🏻‍♂️ I spent weeks searching on the net to think of keywords to use in order to describe my symptoms (ie what the heck is an aura?!?). Found more and more sites and was excited (and disappointed lol) to find out I wasn't going "crazy" and that others knew what I was talking about. Can't solve it until you know what it is.

Just my thoughts for now.
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi Army Vet,

Thanks for the advice I really appreciate it. I will be sure to tell them about the VNS along with the DBS (deep brain stimulator).
Last yr. the students saw me have a absence seizure right after I was speaking and it's on video for others to see. I gave the professor
my okay to share it with students and other staff.
I will be sure to explain an aura seizure along with signs and symptoms of a seizure right before it happens. I'm also debating on
if I should get into the history of epilepsy and how old it is along with mentioning the movie done back in 2005 about Emily Rose
especially since that's a true story.
The main thing I want to get across to the students is that people with epilepsy can live an everyday life and there's nothing to
be afraid of when a person has a seizure. We are just as normal as your everyday person.
Thanks for your advice and time and May God Bless You,

Sue
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
I almost forgot I want to tell the students about all the famous people who have epilepsy like
Elton John, Napoleon, Einstein, Edgar Allen Poe and many more.
 

valeriedl

VIP
Moderator
Supporter
Messages
4,780
Reaction score
175
Points
218
I almost forgot I want to tell the students about all the famous people who have epilepsy like
Elton John, Napoleon, Einstein, Edgar Allen Poe and many more.
That's great, I didn't know all those people have epilepsy! It's a nice way for people to understand that people with epilepsy are very smart and can lead a great normal life. If that's the right way to describe it.
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
That's great, I didn't know all those people have epilepsy! It's a nice way for people to understand that people with epilepsy are very smart and can lead a great normal life. If that's the right way to describe it.
There are a heap of celebrities with epilepsy
When my seizures returned my sister in law gave me some print outs of some info of celebrities who have / had epilepsy. It was an interesting read
 

CQ:)

Veteran
Messages
4,392
Reaction score
235
Points
178
The main thing I want to get across to the students is that people with epilepsy can live an everyday life and there's nothing to
be afraid of when a person has a seizure. We are just as normal as your everyday person.
Thanks for your advice and time and May God Bless You,

Sue
That's what Im telling people its part of life. It can be frustrating at times (more not knowing if Ive had a seizure) but it's life

One thing I have to tell some people epilepsy is more then seizures, its headaches, fatigue, moods/anxiety, depression, for some people medication issues and other issues.

Im also reminding people (especially my boss when he witnesses my seizures) is that I dont remember what happens during my seizures, its all a blur. So if someone witnesses it and can tell me what they saw then thats great.
 

Sabbo

VIP
Supporter
Messages
1,774
Reaction score
134
Points
213
It's great that you'll be telling people about epilepsy. It is important that they know how different seizures can be. I still recall what it was like in school (when I only had simple partials). Other kids thought I was making stuff up to get out of participating in things.
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi Sabbo,

I know all about that I was kicked out of public school when I was in jr. high the teachers and administrators said I was
disrupting class having so many seizures so they sent me to a boarding school away from my family for 3 yrs. at the cost
of $25-$30 grand a yr. I came back my jr. yr. in high school and graduated with no problems. They were living in the dark
back in the late 1970's. One teacher thought I was faking a seizure to get out of class and she hit me on the side of the head
and I was black and blue. I didn't realize she hit me until my classmates told me about it because I was in a seizure when she hit me.
She was fired the following day.
Wishing all of you only the best and May God Bless You,
Sue
 

Sabbo

VIP
Supporter
Messages
1,774
Reaction score
134
Points
213
In my case, nobody even knew I was having seizures. It wasn't I had the grand mals/tonic clonics that any testing was done. I recall complaining of hard to describe "weird feelings" since I was around 5. It wasn't until one occurred during an EEG that it was recognized as a simple partial
 

BIGMAN131307

Veteran
Messages
2,847
Reaction score
145
Points
178
In my case, nobody even knew I was having seizures. It wasn't I had the grand mals/tonic clonics that any testing was done. I recall complaining of hard to describe "weird feelings" since I was around 5. It wasn't until one occurred during an EEG that it was recognized as a simple partial
When I was in grammar school / then jr high school I was having CPS. But they were called "spells". I felt nausea, and asked to go to bathroom.
Less than 5 minutes later, I felt fine. Then I went back to class like nothing happened. It wasn't until high school it was established I having seizures.

It took two rounds of Video EEG monitoring to capture my CPS. And that was after I was out of school.


@ Porkette - Like the others stated, a must is to detail that grand mals/tonic clonics are just one type of seizure. One thing you can do is tell them about Lennox-Gastaut Syndrome (LGS). That alone is whole new ball game. A seizure disorder that manifests into other types.


Even some medical professionals have problems with that one. About twenty years ago I talked with a woman who's son had LGS. She told me how his previous neurologist nurses had no clue what LGS was. While in the waiting room he had at least 3 seizures right there. One while standing, his head went down then fell onto the person in front of him. The second happened while he was talking. He suddenly paused for a few minutes, and glared off into space. While the third happened while he was sitting. His arm started to twitch, then he slipped out of his seat. His mother said this was a good day since he had the VNS implanted.
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi Bigman,

Thank you for sharing you the info. about LGS, I will be sure to share this with the students next week and I will also
be telling them about all the different types of seizures and what happens when a person has that type of seizure.
Wishing you only the best and May God Bless You!

Sue
 

XxBlaqkxX

Stalwart
Messages
176
Reaction score
60
Points
73
It's lovely that you got this opportunity and hope everything went well! Epilepsy/Seizure advocacy is something I'd love to do in my area...just nerve racking to put yourself out there. I would love to reach the schools around here. I hated being that kid in public school with epilepsy - feeling like I was the only one. Caught around students and teachers that had no clue what to do. Awesome for you!
 

Porkette

Veteran
Messages
1,984
Reaction score
278
Points
193
Hi Folks,
It turned out to be a great day teaching the students about Epilepsy and the treatments that can be done along with the
causes of epilepsy. Students asked many questions and thanked me for coming to class to teach. What surprised me is
after class was over students saw me and were still asking a lot of questions. One student just started having absence seizure
last month and see spent a lot of time with me asking me about the meds, and how her seizures started right out of the blue.
I'm glad I was able to help the students and I want to thank all of you from the bottom of my heart for your support and info.
you wanted me to share with the students because I was sure to do it.
Wishing all of You only the Best and May God Bless You,

Sue
 
Top