Five years ago, at the Northeast Regional Epilepsy Group, we took a leap into the unknown and organized our first ever PNES conference for patient and caregivers. Just days before the conference was to take place, we were understandably nervous. We wondered if anyone would even show up, if there was any interest in the […]
This blog post has two parts to it. The first part will talk about a wonderful new book called “In Our Words” edited by Markus Reuber, Gregg Rawlings and Steven C. Schachter and which features testimonials of those living with PNES from around the world. It can be pre-ordered on Amazon with official release date
Every so often, I have an invited writer contribute something relevant to PNES on this blog. Recently, I heard from John Dougherty, author of “Lowering the Shield: Overcoming Psychogenic Seizures” about a disappointing event in his continuing efforts to improve the lives of those living with PNES. I agreed with him that it merits being
The date has now been announced: October 20th, 2018 from 8:30AM-4PM The place has also been announced: Malcolm Forbes Auditorium Morristown Medical Center 100 Madison Ave, Morristown, NJ 07960 Now, all we need is to hear from you about what you think would be the best topics to present that day for an audience that
Upcoming annual conference on psychogenic non-epileptic seizures 2018-we need your input Read More »
Yesterday, an article in print and video format came out in which a Canadian firefighter describes the long road he traveled with his diagnosis of PNES. In it, he explains how he started to have problems after experiencing three sequential traumatic experiences. These, first led to developing post-traumatic stress disorder, and then progressed into PNES
Dis-sociated- is a documentary by Clea Martin Vargas Dis-sociated will be a feature length documentary about Dissociative Seizures, also known as Non-epileptic Attack Disorder (NEAD) or Psychogenic Non-Epileptic Seizures (PNES). Clea decided to make this documentary after witnessing first-hand the tremendous difficulties her friend faced with her diagnosis of PNES (or dissociative seizures), or what
Dis-sociated: A documentary about psychogenic non-epileptic seizures Read More »
Several times a year, this blog invites writers who live with PNES to share their writings. This month, we have a moving poem submitted by Brittney. My name is Brittney, I’m 30, a member of the PNES support group, and I cannot work due to multiple conditions. I wrote the poem below in July when I
A year ago, riding in a bike marathon seemed like an impossible challenge since I had only ever ridden my bicycle recreationally, had never done anything marathon-like ever before and had not even been an especially athletic child or youth growing up. Now, less than a year later, bike riding through the Northeast of the
Many health professionals still hold misconceptions regarding PNES itself. Many still believe that the psychogenic episodes are somehow voluntary in nature. Others are uncertain about prognosis and when it comes to treatment many tend to offer a knee-jerk suggestion of CBT (cognitive behavior therapy) without taking into account that a substantial number of mental health
