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Could I get someone to lend a hand on a project?

Sat, 05/29/2010 - 21:56

Hey everyone,

 

My name is Shaina and I'm currently a student in college. I have to write a paper on epilepsy (I figured it'd be a good topic since I was recently diagnosed with Primary Generalized Epilepsy) and I need some people who would not mind being interviewed. It would just be via email, answering a few questions. ie What type of epilepsy do you have, how has it affected your life, etc. I'd really like to hear back on this because I'm really curious about other people's experiences with epilepsy, and I have never met anyone who has it. 

 

Thanks all. :)

Comments

Re: Could I get someone to lend a hand on a project?

Submitted by phylisfjohnson on Sun, 2010-05-30 - 18:32

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. (Which is pretty ironic, since my step-mother was a psychologist and my step-father was a surgeon!)

People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)  Guys never called back for a second date.

The Dilantin made me feel like a zombie. I even went into a coma once.  And my beautiful, long hair was falling out.

I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.

One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.

So I quickly had to make up some lame story. I couldn’t even have a seizure in peace!

Epilepsy was my “dirty secret.” Like it or not…

Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was amazed and said to myself: “He’s a keeper!” And he has been for 30 years.     Phylis Feiner Johnson   www.epilepsytalk.com

 

When I was first diagnosed as a teen, no one knew what to do with me.

My parents refused to use the “E” word. (Which is pretty ironic, since my step-mother was a psychologist and my step-father was a surgeon!)

People treated me like I was some kind of pariah (which didn’t make me feel warm and fuzzy either.)  Guys never called back for a second date.

The Dilantin made me feel like a zombie. I even went into a coma once.  And my beautiful, long hair was falling out.

I couldn’t drive, couldn’t participate in athletics, couldn’t even get through a date.

I constantly had to lie. Or else no one would hire me. (Not good for their health insurance.) And I was constantly on my guard.

One day, the copy machine next to my office caught on fire. Everyone was evacuated from the building while I was laying on the floor of my office (with the door closed), out cold. When I came out, I innocently asked “where’s the copy machine.” They all looked at me like I was from Mars.

So I quickly had to make up some lame story. I couldn’t even have a seizure in peace!

Epilepsy was my “dirty secret.” Like it or not…

Until one night, I had a flaming seizure on a date and the guy was so sweet and gentle and considerate, I couldn’t believe it. Kind to ME? Little old damaged me? I was amazed and said to myself: “He’s a keeper!” And he has been for 30 years.     Phylis Feiner Johnson   www.epilepsytalk.com

 

Re: Could I get someone to lend a hand on a project?

Submitted by stephsobota on Tue, 2010-06-01 - 20:18
Hey Shaina! I'd be happy to help you with your project if I can. My experience is a bit limited, though - I've only had e for about 3 years, and I'm a partial frontal lober. Mainly simple partials, a few complex partials. I'm a prof at a university, and I've been fortunate because I could change my curriculum to include epilepsy. (My specialty is Russian literature, so I've begun to focus on Dostoevsky.) It's also a challenge, because sometimes I do have arm-shaking seizures in class. Fortunately, my last class was about 1/4 pre-med students, so they were cool with it. As for my personal life, I'm blessed with a wonderful husband....who also makes fun of my seizures. (A sense of humor makes things easier... within the right context) My father thinks I'm possessed by demons...literally....and my bro & his family are okay with me. (They also have a epileptic cat. GTCS about once a week.) It's not all peachy, of course...I constantly worry about what would happen if I sz in front of strangers who don't know me. Anyhoo, my email is smerdyakova@gmail.com, if I can help. Steph

Re: Could I get someone to lend a hand on a project?

Submitted by scooby62 on Wed, 2010-11-10 - 22:21

Anything you need to know,just ask. I was diagnosed at 2 1/2 with petit mal. They were upgraded to Grand Mal when I was 22. I am now 48. I have been on a whole gammut of drugs. Just ask whatever you need. I don't mind at all.

 

Anything you need to know,just ask. I was diagnosed at 2 1/2 with petit mal. They were upgraded to Grand Mal when I was 22. I am now 48. I have been on a whole gammut of drugs. Just ask whatever you need. I don't mind at all.

 

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