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Is Anyone Aware Of The: Epilepsy Gangster?

A MyEpilepsyTeam Member asked a question 💭
Alpharetta,Roswell,Cumming, GA
August 20
•
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A MyEpilepsyTeam Member

The Epilepsy Gangster is a series of You-tube 15 minute videos produced by an individual who interviews others on-screen about many of the topics we share here on this social network. Nothing vulgar, professionally done. The term "Gangster" is used to educate others as to how epilepsy steals from our life, e.g. things we like to do but can no longer due to medication costs. Just google: Epilepsy Gangster. I think you'll enjoy each episode.

August 20
A MyEpilepsyTeam Member

Hi Roy, I'm Tim Ulmer, the creator/producer/host of Epilepsy Gangster who's been epileptic for nearly 60 years. I've been a facilitator to support groups for over 3 decades, and have done one in person and virtually from Alpharetta for 15 years. The premise of the podcast is to inspire people who are either temporarily wham-basted into thinking their life has been stolen because seizures are new to them--or because they've been stuck in a rut and don't see how they can be productive members of society. I come from TV news production, and found myself "victimized" by epilepsy (I only use that word to relate to those lost souls). The offer was made to me to create a show about epilepsy by a woman hoping to start a network on Roku. Although that network never crystalized, I had stories that were too inspiring to sit on. I have a Vagas Nerve Stimulator (VNS) to control my seizures. An electric charge from it alters my voice every 5-minutes for 30 seconds. The attention of people I conversed with but didn't know about my devices, lost attention of what I was saying, and speculated on what was wrong with me. Coming from TV news, I knew that I had to make it part of my brand in order to be successful. Since people told me that the VNS made me sound like Marlon Brando in "The Godfather", I assumed the persona of someone who put aside my life to go "underground" and fight the villanous Epilepsy Gangster. The Epilepsy Gangster steals money from those with epilepsy, he robs them of opportunities and relationships, and he KILLS, whether by SUDEP or deaths caused in accidents. My Gang Members are people who have found ways to be happy, productive, and socially active despite their epilepsy. Guest have included a nationally renowned violinist interviewed on 60 Minutes; a Big 10 Conference football coach whose first seizure was witnessed by half-a-million ESPN viewers; a young woman who was motivated to become a pediatric neurologist because of her own experiences, and others. One of the respondents mentioned the podcast Epilepsy Sparks--its host Torie Robinson was a guest of mine from London!

4 days ago
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A MyEpilepsyTeam Member

Thanks for everyone's opinion. It seems I should stay clear of the Gangster.

September 13
A MyEpilepsyTeam Member

It's one person's attempt to get others to tell their story, hopefully helping others. Some responses were negative and I understand. The term Gangster gives one the impression of a person commiting a crime; when the term was used by the producer to visually show how much of our lives have been stolen by epilepsy.

August 26
A MyEpilepsyTeam Member

One person's view of epilepsy only. As negative as could be possible. All life ruined by epilepsy? Wonder how cancer would've affected him when told all life really would be gone.

August 27 (edited)

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