Is E Being Spoken About More?

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acshuman

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In the last couple of years there has been more shows on TV that have openly spoken about E than there have ever been before!
My question would be 'WHY?'.
Is this happening because more people ARE stepping forward and NOT sitting with their collective 'heads in the sand'?
I think that there may be more and more people who are using all of the new technology that is available to them to spread their words to a much wider audience of people. This is causing some of that audience to do a little thinking and some of the people in the audience are realizing that too many people 'with authority' have been 'sweeping too many important things under the rug'.:ponder:

ACsHuman
 
there are people coming forward but I still have to lie to some and at times I feel very uncomfortable.I never push the subject but always answer questions
 
NOT Revealing That a Person Has E

I know that I felt that I had to deny having E when I was younger! As I grew older, and in some ways more mature, I started realizing that I was receiving more respect from the people who I was upfront with about my having E.
I felt that if someone was going to have negative opinions or feelings, of or toward me, that I didn't want that person in my life. I know that doing this can be very difficult if the people who are having those opinions or feelings are family members,
I have learned over the years that a person has to think of themselves before others sometimes. Some people will say that doing this is NOT the way to live, but if you allow these negative people to be part of your life, you are only enabling them in their quest to belittle you. Each person needs to think of themselves and choose to 'get rid of' the negative parts of your life and use the positive happenings in that person's life to encourage that person to live life in a positive way.:clap:
Living your life in a positive way is going to bring you a lot more happiness than you would have if you allowed the negative people to remain a part of your life.:twocents:
 
Any examples? I live in a digital TV dead zone so we have not had TV since the digital transition in 2009.
 
Hi AC,
I personally think more people are talking about epilepsy more today than back when I was a kid in the 1970's. I make it a point to teach students and staff about it at the school where I work and the old tv show "House" used to show a lot of episodes where a person was having seizures. My Dr. has told me that epilepsy is increasing in the U.S. and that he's seen many more people coming in to find out that they have epilepsy. I wish you only the best and May God Bless You!

Sue
 
Yes. I think that more shows are talking about seizures. But they are not clarifying that Seizure Disorder is also known as Epilepsy. I think E is still considered taboo!
M
 
I been in out patients guy told me he lied to his boss keep job
Guy I think Scotland last year lied to his g.p about sz as result 6 people died from
 
I remember seeing House episodes with seizures but most if not all were secondary to other medical conditions and not being called epilepsy.

Maybe in the episodes after 2009 they covered E. I still enjoyed the show.
 
I don't recall which shows we were watching but did notice a few showing someone having a seizure. First comment my usually comments on is "that's not a realistic seizure" or something like that. They only thing she really recalls is a number of vocal and absence seizures and my tonic clonic seizure.
 
I never denied having E when I was younger; why should I? ppl today talk about diebetes,asthma arthritis. I just might have a sz when ever and I admit I have E and I'm not controllable should I be ashamed NO.
 
Didn't realize this was more about documentaries than mainstream TV. I don't have cable or satelite so don't get exposed a wide variety of shows. I don't hear much about epilepsy unless it's somebody else that has it that I might meet.
 
TV Shows

The shows that I have seen have been on PBS and a network station. They have explained E in away that a 'average' person could understand. One show even was about how a group of mothers in North or South Carolina had taken their fight to get laws passed that were needed for a person with a condition to live a good life and NOT be forced into hiding themselves.:rolleyes:
It was great that these mothers and their daughters won their fight and made the legislators realize that people w/E deserve some respect too!:clap:

ACsHuman
 
I think that the internet and related technologies have led to a somewhat higher profile for epilepsy (and other disorders such as ALS). When people find out that they are not alone, they can feel empowered to be more open about their experiences and more proactive about educating others. And having relatively low-cost ways of getting the message out (such as youtube), allows for a greater variety of stories about epilepsy and more ways in which those stories can be accessed. There's still plenty of stigma and misinformation out there of course, but I think there there has also been a lot of progress in the last 20 years.
 
I've had E for over 30 years and since my kids were born, that is what they know of their mom. So I've had to educate them, the neighbors, friends, the schools, etc. It was a way of life for us, just the same as diabetes (which I also have) is and is asthma. My son had a bad case of asthma and was in/out of the doc's and hospital, too. So I told the kids that my E was a disorder sort of like his asthma. I needed treatment for it, the same as he often needed the nebulizer to breathe. Anyone can "get" it.

And because I have E, I made it a point to educate the kids at schools and everyone else I met. When my son was in high school, he took speech and debate. And on one occasion, he spoke of his mother having epilepsy and he was proud of her. :clap: I was SO proud of him that day for speaking up!!

Back in the 90's after I had my Temporal Lobectomy, I remember seeing a show, must have been on cable TV, about a woman having the same type of surgery. So they were starting those shows way back then. I taped it and sent it to all my other docs. It's only taboo if we allow it to be.
 
acshuman said:
The shows that I have seen have been on PBS and a network station. They have explained E in away that a 'average' person could understand. One show even was about how a group of mothers in North or South Carolina had taken their fight to get laws passed that were needed for a person with a condition to live a good life and NOT be forced into hiding themselves.:rolleyes:
It was great that these mothers and their daughters won their fight and made the legislators realize that people w/E deserve some respect too!:clap:
Click to expand...

All Americans can write to their legislators and help change laws. The district I used to live in had a lawmaker who was also on the local board of the Epilepsy Foundation because his daughter has epilepsy. They made NO qualms about it.
He did and still does speak up and speak out.

So can we:

http://www.epilepsy.com/make-differ...tart-conversation-about-epilepsy-and-seizures

Now that my son is a lawyer, hopefully he will speak up if he needs to.
 
Contacting Our Polititions

I have worked with the legislators(Senate, House) that previously represented the area that I live in. These are politicians in my state(Minnesota). They have been very supportive of E and have come to Epilepsy Workshops and Seizure Smart Workshops that we(EFMN) has held in my area.
It is too bad that the present legislators seem to have their OWN way of dealing with anyone who didn't support them with donations to their campaigns. These 'forward thinking' politicians seem to think that one thing(money) earns a person or organization the right to speak with them.
These are the kind of leaders many people have to deal with, so it seems as though 'money' is the only way to get their attention, which is WRONG.
It will be interesting to see how these 'big money lap dogs' will deal with things happening in their lives that they have ignored for so long.
I know that E is one of their 'after thoughts', which means they can't waste their time paying any attention to it.
This type of 'leader':rolleyes: needs to 'outed' by groups like ours, so E can be seen as the actual problems that E can make people face!:twocents:
Sitting quietly is NOT going to get our message out to the public! 'the squeaky wheel gets the grease'.
I am Not trying to make politicize E, but many times politicians can be our biggest 'roadblock' to get past before we are listened to!

ACsHuman
 
No I do not believe epilepsy is being spoken about more, you hear about the important (as they are called) people or the famous people who come out eventually and say they had a neurological problem or one of there children has epilepsy and everybody says "aw" but you never hear anymore about epilepsy, it is still the taboo subject it always has been or at lest that is how it seems. Why not do a program about the ordinary people who have E and have to live with it, like the good people here.
 
Important People Speaking Up About E

I can definitely say that I have seen an important person w/E step up and become a huge advocate for E! By doing this, that person opened a huge number of people's minds and thoughts towards E.
This took place in Minnesota. The head football coach(Coach Jerry Kill) at the University of MN was hired after the 2011 season. He had dealt with problems from having E after he was diagnosed w/E in his 40s. This was before he took the job at the U of M. When he got to MN he saw how much EFMN(Epilepsy Foundation of Minnesota) was helping people w/E. The biggest item that EFMN did was sponsor a summer camp for kids(9-17yo) w/E and also for kids who lived with someone who has E. When he saw how much this camp helped these kids he stepped up and became an advocate and made personal visits to Camp Oz to speak to the kids. He took this a step farther by taking the time to speak with with each kid individually about E. He has done this ever since he has been in MN. He also started a fund for the Seizure Smart program that EFMN has. He put $100,000 into the fund to be used for Camp Oz and the Seizure Smart program. After doing that he worked with the UofM to name one home game each year as a Game for Epilepsy. When he did this, several other universities in the Big 10 conference started doing doing the same thing.
This just shows how much difference can be made by a well known person w/E.
There have been several columnists in Minnesota papers who have called for Coach Kill to resign, and not EMBARRASS the state any more with his E. The fact is that these columnists soon found out that Coach Kill had many more supporters than they did!:clap:
Coach Kill had to retire last year because of complications from his E, but in the few years that he has been in Minnesota, the knowledge Minnesotans and many other people have about E has grown exponentially.
This was because HE was well known and people WANTED to know about his E, so he told them everything they wanted to know! That was the BIG difference between Coach Kill and many other well known people. They have to speak out about E and NOT just mention that they have E or know someone who lives w/E. Public figures or celebrities CAN bring this type of notoriety to something as 'unimportant' as E, if they want to. The only people who think E is unimportant are the people who don't care about others.:twocents:Coach Kill is a person who truly cares about people w/E!

ACsHuman
 
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You know of one person, can you think of anybody else who supports or high lights epilepsy on a constant basis, who works for and on behalf of people with epilepsy. If you went to any part of Minnesota and stopped a person what do you think they would be able to tell you about epilepsy, very little I think.

Its not a question about how many supporters or who knows you have E, its about how many people you educate about epilepsy, one person educated makes a big difference. There is a difference between being told about E and being educated about E.
 
How Well-Known People Can Spread Information Easier

Fedup,
I am telling everybody about Coach Kill because a well known person CAN reach many more people than the 'Average Joe' can. When a well known person speaks about something, more people pay attention because they want to find out what that well known person is talking about.
I am NOT saying that EFMN(Epilepsy Foundation of Minnesota) is any better than any other state organization, but it has several programs in place to spread the necessary information to the public. They use the Seizure Smart program, Camp Oz, have conferences several times each year, have programs for children w/E to show their abilities, go to the State Capital as a unit, provide people who can speak about E, etc. I work closely with these people, so I know that they are always learning new ways to do things that can be more useful. The staff of EFMN is a group of people who really care about getting the information about E out to the public. The part of EFMN I like the MOST is that they personally ask the people who live Minnesota how they would do things. This asking of the people w/E is something that builds self-confidence in the people, and only makes them stronger, to deal with their E.:clap:
NOBODY w/E can expect all of the problems people w/E have had to deal with to be solved overnight. This will be something that is going to take time and anyone w/E has to be willing to wait for the final result!

ACsHuman
 
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