Step Up and Speak Out

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Comment by AC'sHuman on May 12, 2012 at 7:06pm

FEAR, IGNORANCE, NARROWMINDEDNESS,

These are but a few of the reasons that people w/E are treated the way they are! These words are not describing people w/E! The people with the most fear are the ones that are too brain-dead to even try to learn about something NEW. They live in fear of people who may be different than them. These people will need to learn some NEW facts and info to be able to deal with the items that may happen to a person w/E. The problem is that they already think they know everything, and nobody or anything is going to make them learn more. Because of this attitude, they will try to persecute people w/E. Denial is their best friend. This is how they deal with any problem that comes up in their lives. They just refuse to acknowledge that these things exist, denial makes it easier to deal with, but actually hurts everyone around them.

ACsHuman

Comment by Cassidy Waggoner on May 8, 2012 at 2:59pm

I was told some depression meds (I was on zoloft when being told this) can make the keppra ineffective. Id talk to your neuro and see if theres others combos that may work better for you since that was obviously a seizure. So sorry and I hope things get better

Comment by Marianne Anderson on May 5, 2012 at 4:03pm

My name is Marianne and I have had absence seizures that came on while driving, in my teens. They diagnosed it as road hypnosis. Finally in my 50's I was given a diagnosis and put on Keppra. This worked for years.

The Keppra controlled my absence seizure for about 5 years. On 12/27/11, I took my Keppra while sitting on the side of my bed about 7:30 AM. My sister found me lying back , staring and unresponsive.. I woke up about 2 PM and had no memory of anything and during those hours I did not know who I was,,where I was or my family. after hearing my niece tell my daughter-in-law her Mom had found me clutching my head, I did remember a terrible pain in my head. They kept me over night but the tests showed nothing abnormal. Since then I have never felt normal. I am afraid to ever drive again though I understand the law would not stop me after a certain period of time. I m exhausted and though not suicidal, I really don't care if I live or die. I don't feel sorry for myself, am not embarrassed, just don't feel. I am on medication for restless Legs and depression also. Any suggestions? And thank You for reading, I know this was long!

Comment by Annette on April 12, 2012 at 8:55am

If you need Answers to Questions, and are in the Tampa, FL area, join us:     

Epilepsy Support Group:

A representative from Tampa General Hospital's Nutritional Services
Department will be on hand to answer your questions regarding nutrition and ways it can affect seizure disorders in people of all ages. This meeting is a great opportunity to talk with other Epilepsy patients and their families as well as ask some questions of professionals who work on a consistent basis with those who suffer from it.

Wednesday April 18th 6pm - 7:30pm
Tampa General Hospital Room B-103

(Inside the cafeteria/food court),

(813) 844-7000
 For More Information go to:
 http://www.tgh.org/sg.htm#q18

This event is organized and hosted by Tampa General Hospital. On the Route 19 Bus Line;   Valet parking is available upon request.  There is standard paid parking in the central garage.

As a seizure patient, I would love to meet some other people who suffer from Epilepsy, like I do…

 

Comment by David Heilman on March 21, 2012 at 2:33pm

HELP! ONLY 1 WEEK LEFT!

I am part of a study at Columbia University which hopes to build upon the collected wisdom of people living with epilepsy to inform research about how people take control of their health. Our goal is to provide an opportunity for people with epilepsy to benefit one another through research by sharing their experiences. 

The easy part about it is that you can participate over any computer with internet access: it is an online questionnaire which should take about 60 minutes to complete. The study is voluntary and confidential. In return for completing the survey, participants receive a gift card of their choice and an entry into a lottery for an additional reward.

Participants must identify as having epilepsy and be between the ages of 18 and 65. 

For further details, please contact the Columbia Couples Lab at 212-854-0127, or e-mail Columbia.Epilepsy.Study[at]gmail[dot]com. (Note: Use @ and . in your emails.) 

Thanks so much! 

Vanessa S

Research Assistant

Comment by Amanda Shea on March 20, 2012 at 1:27am

Since my diagnosis I’ve been trying to spread the word about what epilepsy really is. I’m doing an art project about epilepsy and I would love help! It’ll just take two minutes of your time. If you could clearly write in large letters something that having epilepsy has taught you OR what the hardest part of having epilepsy is and take a picture of yourself holding the sign. If you wish to do so, please send me the picture of you and your sign. PLEASE understand that by sending me this picture, you are giving me your consent to show it to others. THANK YOU SO MUCH :D 

Comment by Tammi Zavardino on March 16, 2012 at 12:37pm

Antoine well put and so true however it is hard when you want to be a part of the crowd and treated the same but they just won't do it. I am not concerned with my Epilepsy people can accept me or not because of that and I don't let it get to me but what does get to me is when you listen to others get up and complain because they have to go to work or drive somewhere it makes me so mad because I would give anything to be able to work and driving is a priveledge I would give anything to be able to do again. I have family if you want to call it that but I didn't grow up with them and they really don't care to get to know me better but oh well I would say that is their loss not mine. Look towards the bright light and see if it isn't so much better and stop worrying about those that can't see past the end of their own negativity because they are not worth worrying about. Have a nice day!

Comment by Robert Carnathan on March 15, 2012 at 7:52pm

not only the word Epilepsy freaks people out? It's Epilepsy yes It's like we're lepers. My Stepkids and inlaws don't  bother with Me I feel like

the fith wheel not needed today I was under the weather bad headack

and had a S  But life goes on why must people treat us this way

Comment by Antoine El- Kassouf on March 15, 2012 at 4:43pm

These days the probems that are going thru aren't trully being spoken. The word of friendship has to start to be spoken louder and deeper than it courently is. Because my friends, in the tough times that we are going thru today, pain and stress is the thing that a majority of us are feeling within ourselves and are just not too sure how to let it go. Well, to all who choose to read this, this movement I am trying to do WILL help us!.....OK, let me get it started now.

The words I am writting at this very moment is a speech I urge, from the heart, to give to as many people as I can find. I am going to explain who I am and the good this will bring to the world.

          "TRUTH IS A DREAM, DREAMS ARE THE TRUTH"

----DO NOT JUST LOOK AT IT, START TO SEE IT.
----THE TRUE THING THAT HAS TO BE NOTICED THESE DAYS....IS SIMPLY TO BECOME ONE!

My name is Antoine El- Kassouf, I am a 31yr old man who has had a TBI(traumatic brain injury) at the age of 13 due to being hit by a car on my bicycle back in 1994, in the city of Hazel Park, MI. When this happened I was crossing the street in front of a parked car, so because I crossed in front of that car both me and the car coming were out of view. When I passed the parked car the car coming all of the sudden hit me. At that moment I flew off the bike and took the side-view mirror off the car with my HEAD. This caused the skull to break and then a piece of the skull went into the right tempol. Luckily they brought me back to life, and yes, there is that White Light they speak of. I was in a coma for 3-4 days. When, luckily, I awoke from the coma the memory was lost. Luckily, or maybe by miracle, the memory returned sooner than the doctors expected...thank GOD! From that day on I've had epilepsy which has made life much tougher than it was before hand, but that right there is what's giving the drive to write this! When life can go from a 10 to a -10 in a blink of an eye, that is when you feel "true pain" in life. Now if you've been thru ANY event such as this, that's when true pain is felt. The pain I'm talking about here can be anything that YOU have been thru in life that has placed that weight on you that the mind can't forget about, even if it's not being thought about.

My friends today we should start to speak to oneanother more often on the troubles we are feeling in life instead of griefing on the problems. Because the more we grief to ourselves the more pain we will feel within ourselvesl Why not feel joy instead of grief, and also, why should we not start to help eachother achieve it?
At this time, the thing that we should be doing do "trully" be happy is never being spoken....and it's not just having the cash my friends, it is being happy towards yourself from within! The financial problems we all are going thru isn't the only thing we should talk about. We should never forget about ourselves. Because tell me, even if you are rich but aren't really happy within, are you really happy? So the only thing that will fix that is by letting out the words that describe the problems running thru both ourlives and ourself! And my friends, when we do this, it should also be done in a way that shows respect...."why not show respect until disrespect is shown, show love before hate, become a friend before an enemy, BE and SEE the good before the bad, LISTEN to the word spoken instead of only HEARING the word, etc...

WHEN SOMETHING LIKE THIS IS DONE, A FRIEND CAN INSTANTLY BE MADE, BECAUSE WE MUST REMEMBER....IT'S NEVER ON WHO THE PERSON IS, BUT HOW THE PERSON IS...NOT ON WHAT WORDS ARE BEING SPOKEN, BUT THE WAY THE WORD IS SPOKEN...AND ALSO A JUDGEMENT SHOULDN'T BE MADE UNTIL THE ANSWER IS KNOWN!

When something like this is done it will bring us all together, and then at that time the words US AND WE CAN TRULLY BE SPOKEN!!

Now for me and the many others' who have fell or are falling into that slump, where many are today, I, or should I say WE ARE HERE FOR YOU!

(this is a rough sketch, so there will be more to it and also more explaination. So ask me anything you want...and please if anyone can help me get it goin, I please ask for it. Cause epilepsy I wrote about mess' with the memory.)

Thank you and God bless,
Antoine "Tony" El-Kassouf
248-217-5100
shmone1@gmail.com

Comment by Kelly Rummel on February 24, 2012 at 7:53am

I agree with Stephen...I'd contact the ADA...Exxon is a HUGE corporation, and they CLEARLY discriminated against you for firing you bc of your Epilepsy. If you were having problems in the job you were doing, they should have found you something else. NOT fired you. I'd go get 'em and be RUTHLESS too.. I HATE discrimination!
I'm really sorry you had to deal w/stupidity. It's something I think we've ALL had to deal with at one time or another, sadly. People just fear what they do not understand. Keep us updated Laura. Ok!
GOOD LUCK!!!
~Kelly,mom2Wesley 

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