Epilepsy Talk

Cheers for Charlie! | March 5, 2011

Charlie Peterson is a man who suffered from epilepsy for decades. He had one unsuccessful brain surgery, then another, which was successful, ten years later.

Since that time, he has risen to be an active advocate and to give back by helping all those in need.

Here is the published letter he wrote to the editor of his local newspaper in New York…

Story of Hope

“Everyone knows that February 14 is Valentine’s day, but how many know that St. Valentine is the patron saint of epilepsy?

A lot of people have no clue – but, more importantly, many people don’t know much about epilepsy either.

Did you know epilepsy affects more than three million Americans of all ages? Almost 500 new cases of epilepsy are diagnosed every day in the United States, and the mortality rate among people with epilepsy is two to three times higher than the general public.

Last month, during national Epilepsy Month, I approached and wrote to several local newspapers, as well as regional newspapers and television stations. I wanted to bring epilepsy awareness to this end of Long Island that, in some ways, is still living in the dark ages.

Epilepsy is still considered a hush-hush disease by some, a stigma that nobody talks about. And if somebody sees a seizure, they panic. Yet first aid is so simple. And you could save a person’s life.

1. Turn the person on his side. so he doesn’t choke.

2. Put something soft under his head.

3. Clear the area of both people and objects.

4. Do not put anything in his mouth.

5. And if the seizure lasts for more than three minutes, call 911.

When I spoke with some of the editors, and representatives of our local newspapers about an epilepsy awareness article, I was told, “We’ll look into this,” and they dismissed me.

One editor had a close family member with epilepsy, and one paper even assigned a writer to my story, but the writer put me off until “after the holidays.”

When I spoke with that writer on February 4, I was told she’d have to talk with her editors again.

More nonsense. This is the blind eye people with epilepsy deal with on a daily basis!

My story is one of hope – a story of a man who has lived with seizures for 50 years. I thank God I was enlightened with an alternative to dealing with multiple daily seizures daily in spite of multiple medications.

In October, 2009, I went through two eight-hour surgeries at NYU Langone Medical Center, and I’m seizure free.

Although this isn’t an answer to every seizure disorder, my doctor wondered why no one had ever told me about this possibility.

Some doctors aren’t even sure what to do with patients with epilepsy. Most of my previous neurologists just kept adding more medicine to my treatment.

With more education, awareness and funding, maybe some-one won’t have to live for 50 years before they hear about the many advances made in epilepsy treatments.

If this letter helps just one person with epilepsy, it will be worth the months of indecision and silence of our media…”

Charles Petersen, East Quogue, NY


12 Comments »

  1. I worked in a hospital, saw a cleaning employee buffing the floor which is awkward to use for any one, you have to use a lot of muscle to move it and he went into a generalized seizure. I pulled the plug and went to the person to protect the person from any more injury. I called for assistance but I was in the basement and there were not many people walking down there. When I got assistance we called a code on this wonderful employee. He was unconcious. He was bleeding and tangled and had fallen on a concrete floor.

    I told him I had a seizure disorder too and noted his fall. He then told me that he almost lost his job. He told me that he was grateful for the person that pulled the plug because it could of been more of a serious injury.

    He told me he is part time now. I told him I had an incident too.

    Like

    Comment by Toni Robison — March 5, 2011 @ 9:02 PM

  2. There are so many unsung heroes. 😦

    Like

    Comment by Phylis Feiner Johnson — March 5, 2011 @ 9:24 PM

  3. Hooray for Charlie. 🙂 That’s 1 Great Article. Now, if other media would jump on the band wagon, well, that would really make Our Day. 🙂 One Day at a Time. One person at a Time. Someday, we Will be Heard by All. My Prayer!

    Love Candi

    P.S. Phylis, did ya forget to use the tab when posting your URL on WebMD? 🙂

    Like

    Comment by candi — March 6, 2011 @ 3:19 PM

  4. […] PhylisFeinerJohnson CWE Benefactor Recent Blog: Cheers for Charlie! […]

    Like

    Pingback by Epilepsy Awareness Brainstorm! - Epilepsy Forum — March 7, 2011 @ 7:53 PM

  5. […] could tell them our own story or Cheers for Charlie! Give them copies of the article The Stats and Facts of Epilepsy and/or Epilepsy Myths […]

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    Pingback by Epilepsy Awareness Brainstorm! « Epilepsy Talk — March 7, 2011 @ 7:58 PM

  6. I think that’s a great idea! Cheers for Charlie!!

    Like

    Comment by Toni Robison — March 8, 2011 @ 1:51 AM

  7. Way to go Charlie!!!!You always make a difference in peoples lives. Love you!!!!!!!

    Like

    Comment by Sue — March 8, 2011 @ 6:18 PM

  8. Charlie, I admire how much you look to be an inspiration and to repay life for the break you received. I don’t think many people can relate to the value of a succesful surgery but I can and I can see how you’ll always feel you owe something for your second chance at life. I try paying back for my fortune as nuch as I can and that includes a two-page story in our local newspaper, talking to children, their parents and adults about surgery and spending a week of vacation at a camp for kids with epilepsy. Thank you for all you’ve done and letting me know I’m not alone.

    Like

    Comment by Ed — May 26, 2011 @ 2:13 AM

    • Hats off to you Ed!!! We need as many people like you as we can find.

      Sadly, so many advocates work in silence and lack of recognition.

      Sometimes, even I feel like I’m spitting in the wind!

      Like

      Comment by Phylis Feiner Johnson — May 26, 2011 @ 2:34 PM

  9. I fully agree completely.

    Like

    Comment by Jokes — November 23, 2011 @ 3:42 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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