Northeast Regional Epilepsy Group PNES - PsychologicalNon Epileptic Seizures
Quick Links Newsletter N° 41 | March, 2021

1- Feature Article: The experiences of family members of those who live with epilepsy and seizures by Christina Dykenga
2- Seizure Star: Brionna Freeman
3- Epilepsy Survey results from the epilepsygroup.com homepage
4- Safety in epilepsy: Do you know what a Seizure Action Plan is and why you should have one? Read on to learn more.
5- Our community of patients, relatives, friends and doctors has been busy advancing the field of epilepsy and seizures!
6- Stay tuned for epilepsy on the move: There are exciting activities in the works and coming up soon.

 

Feature Article: The experiences of family members of those who live with epilepsy and seizures by Christina Dykenga

The idea for our March newsletter feature article came up when speaking with one of our founding epilepsy support group members, Christina.  As an adult living with epilepsy, she commented in one of the meetings about how she was concerned that epilepsy had impacted her family in many ways, some of which she was aware but others which might be unclear to her. She speculated that the affects had touched her mother, spouse, and children, one of whom has epilepsy too.  We did a quick search of the existing scientific literature and it became clear that this topic seems to have been somewhat overlooked by researchers examining quality of life and other social issues in epilepsy. That is especially the case when it comes to the families of adult PWEs.  As a result of that conversation, we decided to focus in on the effects of epilepsy on a family of an adult PWE by interviewing the different generations.  And so was born the newest feature article for our upcoming issue. The group member, Christina Dykenga, took it upon herself to interview her family members about their experiences and perspectives for this article.  

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Seizure Star: Brionna Freeman
Seizure Star: Brionna Freeman

Our March 2021 Seizure Star is Brionna Freeman, an incredible young person who was nominated by her epileptologist, Dr. Eric Segal! He expressed admiration for all she was accomplishing as a full-time college student while also working and much more.  Read below to learn about the Northeast Regional Epilepsy Group March Epilepsy Star!

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Epilepsy Survey results from the epilepsygroup.com homepage
Epilepsy Survey results from the epilepsygroup.com homepage

Epilepsy Survey results from the epilepsygroup.com homepage: For this issue, we posed the following question to our website visitors: If you are a person with epilepsy, are you planning to get one of the COVID-19 vaccines this year?

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Safety in epilepsy: Do you know what a Seizure Action Plan is and why you should have one? Read on to learn more.
Safety in epilepsy: Do you know what a Seizure Action Plan is and why you should have one?  Read on to learn more.

An important way to keep safe when living with epilepsy is to make sure you have a Seizure Action Plan.  This type of plan is useful no matter the age of the patient to ensure that witnesses know what is going on (an epileptic seizure), what to do to help and what not to do.  This is beneficial to everyone involved.  

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Our community of patients, relatives, friends and doctors has been busy advancing the field of epilepsy and seizures!
Our community of patients, relatives, friends and doctors has been busy advancing the field of epilepsy and seizures!

Although it has been challenging to be active as a community with all the social distancing we have been advised to keep, we have still managed to keep active by working on research and publications.  Also, we are very proud of our doctors who were voted Best Doctors this year!  Congratulations to all of them. 

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Support Groups

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VIRTUAL SUPPORT GROUPS

PSYCHOGENIC NON-EPILEPTIC SEIZURES (PNES) SUPPORT GROUP

Third Wednesday of the month from 1PM to 2PM

The group is for patients at our NEREG PNES program diagnosed with PNES who have completed treatment or who are advanced in their current treatment. Unfortunately, the group is not open to anyone who has not gone through our treatment program because the demand would be too great for our conference call. The group meets to touch base, to go over current problems that may have arisen for group members associated to PNES, for general support and comradery, and to continue to be part of the PNES community. To register or obtain more information: lmyers@epilepsygroup.com

EPILEPSY SUPPORT GROUP

Third Wednesday of the month from 12PM to 1PM

The group is for persons with epilepsy who wish to connect virtually with others also living with epilepsy. The group meets to touch base, to go over challenges that may have arisen for group members associated to epilepsy, for general support and camaraderie. To register or obtain more information: lmyers@epilepsygroup.com


Joining a group is easy!

Benefits:
• All 60-minute sessions are held through GoToMeeting® 
• Each group is kept small in order to encourage friendship and optimal discussion time (8-10 participants.)
• All groups are led by a facilitator who is knowledgeable about psychogenic non-epileptic seizures. 
• Confidential.
• Participation in this facilitated discussion is expected and encouraged. You can have your camera on or off-your choice.
• FREE 

CONTACT INFORMATION

If you are a NEREG patient, have epilepsy and would be interested in a similar group, please contact lmyers@epilepsygroup.com. In the past, we tried to establish an on-line group like this for our patients with epilepsy but there was limited attendance-but who is to say that we can't try again and with better results?

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Stay tuned for epilepsy on the move: There are exciting activities in the works and coming up soon.
Stay tuned for epilepsy on the move: There are exciting activities in the works and coming up soon.

Although much of the world has gone virtual this past year, there are still plenty of activities going on in the epilepsy community. Check them out below.

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 iso epilepsy group www.epilepsygroup.com iso epilepsy life links www.nonepilepticseizures.com Follow Us on Facebook

Launched in 1998, Northeast Regional Epilepsy Group (NEREG) is a multi-site practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults with epilepsy. NEREG provides state-of-the-art diagnostic procedures, 24/7 patient service, highly skilled and experienced practitioners, and exceptional specialty programs designed to cover a broad range of health care needs in each epilepsy patient. NEREG consists of seventeen board-certified epilepsy specialists with fellowship training in adult and childhood epilepsy, as well as many other highly skilled health care providers including pediatric/adult neurosurgeons, neuropsychologists, clinical psychologists, epilepsy nurse practitioners, a specially trained nutritionist and epilepsy advocates.

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bullets 20 Prospect Avenue, Suite 800
Hackensack, New Jersey 07601
Tel (201) 343-6676 / Fax (201) 343-6689
bullets 333 Westchester Avenue, Suite E104
White Plains, NY 10604
(914)4289213
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