Epilepsy Talk

Preventing SUDEP

October 3, 2015
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Imagine a simple test to determine your risk for Sudden Unexplained Death in Epilepsy. An EKG, and if positive, a further genetic screening test to identify the family of genes that are associated with this new risk factor…

Embrace — A Beautiful Smart Watch — Designed to Save Lives

September 27, 2015

“The first medical-quality wearable to help measure your stress, epileptic seizures, activity and sleep.”

“It has been created to track your activity, stress and overall body balance, enabling people that live with epilepsy to get an alert when an unusual event happens, such as a convulsive seizure, warning them and their loved ones,” says Empatica, the watch’s creators.

Gratitude is the Attitude

September 20, 2015

A wise woman once told me: “When you wake up in the morning — before you get out of bed — think of 5 (or 10!) things that you’re really grateful for.” (I think 10 is a bit of a stretch.)

That simple advice, changed my attitude. And my life.

Epileptic Synesthesia: What Is It?

September 13, 2015

Epileptic Synesthesia is pretty rare. It occurs in 4% of temporal lobe seizures and is theoretically caused by the actual electric discharge or abnormal stimulation of the brain in a seizure. Sight, sound, touch, taste (and, much less often, your sense of smell) sensations can occur simultaneously and also involve involuntary movement. An example is the sensation of flashing lights, a taste, a feeling of heat rising, and a high-pitched whine.

Here are three other (rather alarming) examples:

You’re a poet and you don’t know it…

September 6, 2015

Inside of you is something special waiting to break out.

Maybe you’re an artist…actor…architect…painter…poet…
philosopher…singer…or someone you just don’t know.

Heat and Seizures

August 24, 2015

Heat can trigger seizures for some people. For example, when you take a very hot shower. (I ended up having a seizure and bonked my head.)

An epileptologist explained that heat can sometimes trigger a seizure for some people because the hot water — as well as the warm air — is firing up the neurons in the brain which can cause a seizure.

There’s a hidden artist inside you!

August 15, 2015

Maybe you’re an artist…actor…architect…painter…poet…philosopher…singer…or someone you just don’t know.

Because, quite simply, there’s another side to that electrical mischief that epilepsy produces.

Some types of epilepsy can spark inspiration, enhance creativity and bring out the latent artist in you.

It’s just waiting to be discovered…

In Tribute to Charlie Petersen

August 9, 2015

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.

Top Seizure Apps For Smartphones…

August 2, 2015

A recent study published in the International Journal of Epilepsy has found that certain smartphone apps might aid those with epilepsy.

These apps include seizure diaries as well as medication trackers with reminders to take the next pill.

Apps are available to answer any question patients with epilepsy might have and to remind doctors about drug interactions to watch out for.

Most of them are free of charge.

Advance Health Care Directives and Living Wills

July 26, 2015

Most people don’t want to think about death and dying — so they don’t. Until they have to.

Unfortunately, that often means that families are left struggling with difficult decisions about important matters, such as whether or not Mom would like to be kept alive using a ventilator, or who should be in charge of managing Dad’s financial affairs, because Mom or Dad never made clear what they wanted for themselves.

Advance directives are important tools for anyone to have, because even the healthiest person could experience a sudden accident and not be able to speak for herself…

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've 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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