Epilepsy Talk

Hooray for Forums!  | June 5, 2022

I never met anyone with epilepsy until I was 29. And that was a best friend of my husband’s.  (Which may explain why Arthur didn’t freak out when I had a seizure on our first date!)

That was it. Beginning and end. Until 2009, when I began participating in other forums (I didn’t even know what a “forum” was!) and started Epilepsy Talk.

Now my life is so much richer. Because of you. Not only because we can help, support and advise one another with “seizure disorders.”

But because there are so many people who are so WONDERFUL whom also happen to have epilepsy, too.

And so, I thank all of you.

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10 Comments »

  1. I am thankful for you!

    Liked by 1 person

    Comment by Nancy — June 6, 2022 @ 12:15 AM

  2. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — June 6, 2022 @ 7:24 AM

  3. I never knew anything about Epilepsy or seizures until in the middle of life, I started waking up in intensive care unit hospital beds & did NOT know why & how I got there.
    Desperately searching & looking for answers, I ended up joining this forum & I have learned as much as I needed to know about Epileptic seizures in EpilepsyTalk.
    Thank you for your devotion, commitment & hard work in providing me the place where I can learn, understand & cope with my unfortunate predicament, I managed to survive dealing with my seizures in the best way I can since the initial seizures I started with.
    Keep up the great work. 👍!
    Gerrie

    Liked by 1 person

    Comment by Gerrie — June 7, 2022 @ 5:31 AM

  4. Gerrie is 100% spot on with E-Talk’s forum. My personal thank you, as well. I always look forward to the next topic. For me, the best topic(s) are about getting around the prejudice that we all experience. You do a great job helping with such.

    Liked by 1 person

    Comment by Roy Anthony — June 7, 2022 @ 5:38 PM

    • And you Roy, are a shining example of that!

      Like

      Comment by Phylis Feiner Johnson — June 7, 2022 @ 9:36 PM

    • Roy,,, Thank you for your compliments & kind words.
      In my desperate search for answers to my medical hardships, I made a lot of good friends like you in this forum, who shared their experience with Epilepsy for me to learn on how to cope with my seizures.
      Therefore, I will always remain grateful for the support I got from all members of this forum.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — June 8, 2022 @ 4:37 AM

      • Gerrie, while not on topic here, I just learned through others’ conversations with their epileptologist that aerobically induced (jogging, etc.) increase in body temperature in hot weather can incite a seizure. The reason given was because the higher body temperature heats up neurons in the brain, which then causes the seizure. I wish someone would have told me this 25 years ago. Note, they also stated that higher body temperatures can be caused while taking a hot shower, bath, resulting in a seizure. I had this happen to me last fall while resting in a bathtub full of hot water. I had just come inside from some real cold weather. The rapid change between the cold air outside and the immediate hot bath water, seems like this confirms what I’ve read. In December last year, a retired NFL player who’d been experiencing seizures was found deceased in his shower. Like me, he may have not known of what I’ve shared herein. I’ve been very fortunate. I hope this is info you’ve not been aware of previously. My best.

        Liked by 1 person

        Comment by Roy Anthony — June 9, 2022 @ 1:27 PM

  5. Roy,
    Thank you for sharing your experience.
    It’s good to know that you survived another unfortunate predicament.
    While I’m NOT aware of temperate variation in relations to seizures, my neurologist always strongly recommends taking showers than bathing in bathtub or swimming in the pool.
    Sad to hear about the football player succumbing to seizure.
    Unfortunately, I know of a good old friend having a seizure in a swimming pool & drowning.
    May their souls rest in peace.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — June 11, 2022 @ 6:26 AM


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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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