Northeast Regional Epilepsy Group Epilepsy Life Links
Quick Links Newsletter N° 30 | June, 2018

1- Treating epilepsy with diets: Ketogenic diet as explained by Angela Samuels (RD, CNSC) - Feature Article
2- Epilepsy and Seizure star: Sue Byczo
3- Epilepsy Survey results: Talk to us and tell us if YouTube® is useful to you in learning about epilepsy and psychogenic seizures.
4- The Brain Sentinel-detecting seizures anywhere and anytime of the day and thereby granting peace of mind to those living with epilepsy.
5- Our epilepsy and seizures community of patients, family, friends and doctors has been busy!
6- Epilepsy on the Move: Stay tuned for upcoming events and news having to do with epilepsy and seizures in the second half of 2018

 

Treating epilepsy with diets: Ketogenic diet as explained by Angela Samuels (RD, CNSC) - Feature Article

For this issue, we revisited the topic of the Ketogenic diet with Angela Samuels, RD, CNSC who specializes in dietary treatments for epilepsy. She is a Certified Nutrition Specialists (CNS); those who specialize in this are advanced (Board certified) nutrition professionals who are trained to work with obesity and chronic illnesses. We asked her questions about all diet options now available for epilepsy and then more specifically about the ketogenic diet.  

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Epilepsy and Seizure star: Sue Byczo
Epilepsy and Seizure star: Sue Byczo

Sue Byczo is our June 2018 epilepsy star. She was chosen because of her work with a safety product she created, the Help Belt.  Funny story, we discovered Sue on Etsy, the arts and crafts website where she was offering her Help Belts.  Read more below about this amazing woman and how she has met the challenge of epilepsy head on.  

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Epilepsy Survey results: Talk to us and tell us if YouTube® is useful to you in learning about epilepsy and psychogenic seizures.
Epilepsy Survey results: Talk to us and tell us if YouTube® is useful to you in learning about epilepsy and psychogenic seizures.

The guests who visited our website (www.epilepsygroup.com) told us about how they use (or don't use) YouTube® to learn about their seizures. 

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The Brain Sentinel-detecting seizures anywhere and anytime of the day and thereby granting peace of mind to those living with epilepsy.
The Brain Sentinel-detecting seizures anywhere and anytime of the day and thereby granting peace of mind to those living with epilepsy.

The Brain Sentinel can detect seizures anywhere and anytime of the day and thereby grants peace of mind to those living with epilepsy and those who care for them. Read more about how this product works and who it can benefit.

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Our epilepsy and seizures community of patients, family, friends and doctors has been busy!
Our epilepsy and seizures community of patients, family, friends and doctors has been busy!

Patients, family members, friends, doctors, office managers, secretaries and nurses have all been extra-busy these last few months raising epilepsy awareness through 1) Stroll for Epilepsy led by team captain, Shelby Santucci and 2) Dr. Kirsty Bortnik became an American Psychological Association-United Nations (APA-UN) Representative. Dr. Lorna Myers also broke a record of sorts.  Her book: "Psychogenic non-epileptic seizures: A Guide" sold over 3000 print copies (not including Kindle and copies sold at publisher's cost to hospitals and foundations) since published in 2014.  

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Support Groups

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Our support groups are back up and running through September 2017 to June 2018!

VIRTUAL SUPPORT GROUPS

Psychogenic non-epileptic seizures (PNES) support group
Third Tuesday of the month until June: From 12-1PM

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

The NEREG Epilepsy Virtual Support group provides a forum that facilitates and promotes the sharing of common interests, information, and experiences within the epilepsy community. This is an online group which allows you to participate in support activities when you are unable to attend a local support meeting in person; and are managed by a qualified facilitators knowledgeable on Epilepsy-related topics. During these sessions, you have the opportunity to speak with other participants, seek advice, make friends, discover new ideas, share your experiences -- good and bad, and help support others managing epilepsy. Please email rzeng@epilepsygroup.com in order to sign up!


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 are not on camera, so come in your PJs.
• 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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Epilepsy on the Move: Stay tuned for upcoming events and news having to do with epilepsy and seizures in the second half of 2018
Epilepsy on the Move: Stay tuned for upcoming events and news having to do with epilepsy and seizures in the second half of 2018

The Northeast Regional Epilepsy Group is marching full steam ahead by participating in a truckload of activities. These range from walks to runs, to conferences, to lectures.  Every one of these events helps move epilepsy and seizure disorders forward! We hope you will choose to join us for at least a few.

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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 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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Hackensack, New Jersey 07601
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White Plains, NY 10604
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