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Newsletter N° 41 | March, 2021 |
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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 |
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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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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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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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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 twenty 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.
Launched in 2003, Mid-Atlantic Epilepsy and Sleep Center (MAESC) is a practice located in Bethesda, Maryland that offers neurological services and comprehensive care to children and adults. MAESC consists of six board-certified neurologists who treat epilepsy, multiple sclerosis and other neurological illnesses.
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20 Prospect Avenue, Suite 800
Hackensack, New Jersey 07601
Tel (201) 343-6676 / Fax (201) 343-6689
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333 Westchester Avenue, Suite E104
White Plains, NY 10604
(914)4289213
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