The National Association of Epilepsy Centers acknowledges more needs to be done

The National Association of Epilepsy Centers (NAEC) has told the The Nonepileptic Seizure Organization that they acknowledge that more needs to be done to help those with NES receive proper referrals to experienced NES treatment providers. We have contacted many of their member centers and have found that they often do not have well established referral systems in place for NES patients. They provide diagnosis for NES but do not have the specific names of treatment providers (psychologists/psychiatrists) ready to give to them.

The Nonepileptic Seizure Organization believes that every epilepsy center who is a member of the NAEC needs to have a comprehensive referral system in place. This is one of the requirements in the NAEC’s “Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in the United States”.

We’ve had some good discussions with NAEC personnel and hope that they follow through with commitments stated to us to address this problem.

Having seizures in public

When my wife has had seizures in public people’s reaction have been interesting and varied. Some people “freeze” and don’t know what to say. Others react with some panic. And some react with genuine care. The thing I want to point out is that those with seizures have an absolute right to have them and should not feel ashamed. This can be very difficult of course because we live in a society that doesn’t show much concern many times for those with any kind of disability. Seizures are often times a part of our healing process and we all the right to heal and grow.

Once my wife had a grand mal seizure during the taping of a television show while we were in the audience. The show stopped and some stage hands came over to find out what they could do. I informed them all was okay but someone had immediately called an ambulance. A producer finally found us and led us to the green room where my wife was able to quickly and fully recover. The ambulance crew threatened to take her to the hospital without our consent even after we explained that her seizures were not endangering her. They finally were satisfied that she was okay and left.

The main thing I do when she has seizures around people we don’t know is that I remain very calm and gently let people know that she is alright. I sometimes hand people a small seizure first-aid card (from the Epilepsy Foundation) that explains her type of seizures and how to care for someone who has them. I want to educate them and help them to help others who they may encounter with seizures.

If anyone would care to share some of their public seizure stories it would help us to identify key areas where we can better educate others.

Psychological community is not helping much with NES

We have contacted the American Psychiatric Association and the American Psychological Association by phone and by email and they are not interested in helping us with our efforts to help those with NES. The American Psychiatric Association told me over the phone that they do not speak with the public, only to members and when I asked to speak with the Chairman of the Board of Trustees I was told that I could send an email but couldn’t say if it would be forwarded to that person. I sent one anyway hoping to talk with them about ways we could help each other but have received no response.

I tried email and phone contact with the American Psychological Association and got pretty much the same result. They finally forwarded my email to someone who simply replied that they don’t link to site that are by non-health professionals and even if we were they get too many requests and so said that they “decline our request”. What is most surprising to me is that they didn’t even say something to the effect of “good luck with your efforts” or even “thanks for trying to help those with NES” much less end the reply with a “thank you”.

We are trying to help patients that their members are responsible for treating. Why do they not have any patient information on their site for NES?
We have found that they don’t seem too interested in the subject of NES.

Thank you Charlene

Charlene has just started a web site at http://www.webspawner.com/users/charmagick/index.html about Psychogenic Seizures that you should visit soon. Please read her story. It will inspire you to stay brave and not lose hope.

Check out her site and sign her guestbook!

Thank you Angela Shelton

Thank you Angela Shelton for the work you are doing and for helping us to spread the word about Nonepileptic Seizures. Please visit Angela’s web site at www.angelashelton.com and her blog at www.angelashelton.com/weblog/ for inspiration and information on how we can all work to improve the lives of survivors of abuse. Angela Shelton is working to better the lives of survivors of abuse and has a wonderful organization that everyone must be aware of. And many NES sufferers have experienced traumatic abuse, often as children.

From her foundation:
The Angela Shelton Foundation was born out of the on-going and remarkable response to the documentary, Searching for Angela Shelton.
With the intent of humorously surveying women in America, filmmaker and model, Angela Shelton drove around the country to meet other Angela Sheltons.
She discovered that 70% of the 40 Angelas she spoke to had been victims of rape, childhood sexual abuse or domestic violence, herself included.
After receiving countless emails from survivors all over the world and speaking at organizations and universities in many states, Angela Shelton has met thousands of survivors who want to heal and don't know how. She is now on a mission to help survivors heal and lead joyful lives just like she was able to do. She has her own personal website and also writes a blog about her experiences.


Thanks again!

To the American Psychological Association and American Psychiatric Association: Please help!

I have been trying to speak with someone at the American Psychological Association and American Psychiatric Association for months now about helping us spread the word about Nonepileptic Seizures. They have not replied to any emails or phone calls.

The psychological community has done next to nothing to promote effective treatments for NES and what’s disturbing is how they ignore contacts from organizations like ours who are trying to help “their” patients. NES affects as many as half a million people in the US and up to 30% of patients who are seen at Comprehensive Epilepsy Centers are found to have NES. Once the diagnosis is made, they are told that they need psychologically based treatment. Why do both APA web sites offer nothing in the way of NES resources? Why do not even wish to link our web site?

I hope that someone from either organization sees this and decides to contact us.

Announcing an on-going therapy group for those with Nonepileptic Seizures

Stanford University in Northern California is home to some the most experienced leaders in the field of Nonepileptic Seizures. There is a therapy group that meets regularly there and it is specifically for those with Nonepileptic Seizures.

The group is led by Kim Bullock, MD, Clinical Assistant Professor in the Stanford Behavior Medicine Clinic at Stanford University in California. Group members will learn ways to decrease and stop their nonepileptic seizures and improve their quality of life. Visit our "News" page on our web site at http://www.non-epilepticseizures.com for details.