Psychoeducation: refers to some form of intervention (lecture, support group meeting or published materials) that aims to educate the audience members/readers about a specific health condition, provides coping suggestions and informs about treatment options. Usually, psychoeducation is provided by health professionals but not necessarily; patients who have educated themselves about their health issues can prove to have very powerful and helpful voices.
Summer is almost here. Below you will find a list and brief descriptions of a series of books written by professionals who work with PNES and patients who live with PNES. Some books are unique in that they are the published words of patients or professionals speaking about their personal experiences.
After reading this blog, I encourage you to pick up one or several of these books for yourself or for someone who could benefit from the gift of knowledge. Use this summer season to become more knowledgeable about yourself.
Book recommendations:
Lowering the Shield: Overcoming Psychogenic non-epileptic Seizures-Kindle book edition. John Dougherty. This book was the very first book written for patients diagnosed with PNES and their loved ones and offers useful advice for those navigating this tough road as well as sharing the author’s and his wife’s experiences that many will feel reflect their own.
Psychogenic non-epileptic seizures: A Guide by Dr. Lorna Myers. I wrote this book a few years back after realizing that there was no published information (online and in-print) to help guide persons who were diagnosed with psychogenic non-epileptic seizures. Often, patients were discharged from the hospital with little more than being told: “you have something called PNES and you need to see a mental health professional.” This book was written to help fill that gap and provide patients and their families with a GUIDE. http://www.amazon.com/Psychogenic-Non-epileptic-Seizures-Lorna-Myers/dp/1492881414/ref=sr_1_2?s=books&ie=UTF8&qid=1390824900&sr=1-2
And Japanese: https://www.amazon.co.jp/%E5%BF%83%E5%9B%A0%E6%80%A7%E9%9D%9E%E3%81%A6%E3%82%93%E3%81%8B%E3%82%93%E6%80%A7%E7%99%BA%E4%BD%9C%E3%81%B8%E3%81%AE%E3%82%A2%E3%83%97%E3%83%AD%E3%83%BC%E3%83%81-Lorna-Myers/dp/4260021974
The Color of Seizures: Living with PNES by Kate Taylor and Jeffrey Underwood. This book is written by a person living with PNES and her co-author. It discusses the realities of PNES and provides numerous reflective and artistic exercises for patients to employ in their road towards self-understanding and recovery. I suspect that people interested in mindfulness and wellness will be especially attracted to this book.
In Our Own Words: Stories of those living with, learning from and overcoming the challenges of psychogenic non-epileptic seizures (PNES)
By Mary Martiros and Lorna Myers
Mary Martiros approached me several years ago and suggested that we work on a book that gave a voice to patients from across the globe who were living with PNES. This publication aimed to give a voice to those who are so often not heard by medical professionals and the general public. It is a compilation of testimonials given by people from across the US and abroad about their experiences of living with, learning from, and surviving psychogenic non-epileptic seizures (PNES). When I read through it, even years later, I am always so in awe of how honest and moving the contributors are.
View from the Floor: Psychogenic non-epileptic seizures: A patient’s perspective.
By Kate Berger. I have gone on record before saying “I LOVE this book!” In it, Kate does a fantastic job of describing her journey with PNES (diagnosed in high school) and provides superb insights and advice for those dealing with PNES. If you are a teen/young adult with PNES or just want to hear an excellent tale of living with PNES, grab this book right away.
* In Our Words: Personal Accounts of Living with Non-Epileptic Seizures (The Brainstorms Series) Unabridged Edition, edited by Markus Reuber, Gregg Rawlings, and Steven Schachter. The purpose of this excellent book was to show those diagnosed with PNES that they are not alone. Many of the stories that were bravely shared by persons living with PNES reveal how it has been possible to manage and to come to terms with their seizures. These heartfelt personal accounts are also meant to allow family, friends, healthcare providers and researchers truly understand what it is like to live with this disorder, and they certainly do get that point across in a powerful manner. https://www.amazon.com/Our-Words-Personal-Non-Epileptic-Brainstorms/dp/0190622776/ref=sr_1_1?s=books&ie=UTF8&qid=1528376172&sr=1-1&keywords=markus+reuber&pldnSite=1
* On the floor again: A Raw Look at Life with Nonepileptic Seizures (not to be confused with View from the Floor) by Mia Montgonery: Rather than describe the book, let me just quote what the author herself wrote about her book: “On a sunny, summer Saturday morning, Mia Montgomery’s world turned upside down—as if someone shook the snow globe in which she had previously always resided unaware. Mia found herself trapped inside her body, as her limbs and torso shook wildly out of control. Her senses still worked, as did her mind, and therefore she could see, feel, hear, and think as her first-ever seizure rocked her body. Terrified, she was plunged into a dark journey of multiple seizures per day, and a medical merry-go-round of tests, doctors, medications, and finally a somewhat murky diagnosis.” Not only is Mia a gifted writer, she also holds no punches when speaking about her tough road with PNES.
“Taking Control of your Seizures” workbookby Dr. Curt LaFrance and co-authors.
In this book, the authors have described a mode of treatment (a form of cognitive behavioral therapy) that is a workbook for patients. There is another book that is a manual for therapists. I do have to say that this therapy has been shown to be very useful for a number of patients although there is no magic bullet and some patients may require longer term or different approaches depending on their characteristics. Just keep that in mind.
As you can see, there is an ever-growing number of books about PNES which is excellent news! The more this information is disseminated, the better. Only in this way can we hope that PNES will come out from the shadows.
PS: I just received a book in the mail that I have not had the chance to read yet, but that is also written by someone living with PNES and complex PTSD and which looks very interesting based on the back cover: Dancing with the octopus: A memoire of a crime by Debora Harding/ Stay tuned for a review…
