Epilepsy Talk

Ode to a Doctor’s Visit…

June 22, 2017
12 Comments

They forget that we live 365 days or 8,760 hours a year with our illness…

We see them for four 30 minute visits or 2 hours in that year while we’re struggling…


In Tribute to Charlie Petersen

August 9, 2015
15 Comments

Charlie Peterson was 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 had risen to be an active advocate and to give back by helping all those in need.

He was my friend and a friend to the world. Starting a support group where there was none. Counseling others with epilepsy and those who had a loved one with epilepsy.

He was generous to a fault, giving back in turn for the “miracle” that had saved his life.

He was patient, kind, generous and giving. He was my #1 hero.


Seizure Free – A Hope or a Promise?

October 23, 2012
4 Comments

Is it a reality…a hope…or a promise?

Have you been there once for a visit? And then come back, to the land of falling down, shaking, quaking and blackouts.

We all know, the only thing that remains the same is change. Everything is in a state of flux. Drugs, science, our bodies, our brains. From that you can choose hopelessness. Or hope…


Clinical Trials. YES or NO?

February 10, 2011
6 Comments

If I was asked to take part in a clinical trial, I’m not sure what I’d say…

First there is the fear factor. Would I be a guinea pig for something dangerous? Would they take away my medicines? Would it hurt me? Would it change something in me?

I asked those very questions to Patient Advocate David Albaugh at Team Epilepsy. http://www.teamepilepsy.org/

Here’s what he had to say…


The Sacred Disease. A Movie You Can Not Afford to Miss…

November 28, 2010
4 Comments

The Sacred Disease is a movie you can not afford to miss…

Motivated by lack of funding and awareness for epilepsy, this film covers the full spectrum of what it’s like to live with this neurological condition by following the lives of three individuals. The Sacred Disease displays an intimate portrayal of the complexities and daily difficulties faced by people with epilepsy.


    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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