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NSDF Newsletter May 2012


Living with Seizure Disorder

May 2012

 Welcome friends to the newsletter for you! Living with Seizure Disorder is designed with you in mind and future editions will have your voice – thoughts and ideas right from the seizure disorders community. Sit back and enjoy.

“When you feel like giving up, remember why you held on for so long in the first place.”~ Unknown

Exercise of the Month: Our exercises are inspired by a group I attend at, thank you to Millymouse1 and Emmabe1 for creating Chair Exercise team at Sparkspeople and making this exercise available:  Seated Upper Body Toning Workout

Did You Know? Antiepileptic drugs (AEDs) associated with weight loss are: felbamate(Felbatol), topiramate(Topomax,Topiragen), and zonisamide(Zonegran). AEDs associated with weight gain are: gabapentin(Fanatrex,Gabarone,Gralise,Horizant,Neurontin) pregabalin(Lyrica), valproic acid(Depakene,Depakote,Epilim,Stavzor), and vigabatrin(Sabril) and possibly,carbamazepine(Carbatrol,Tegretol,Epitol,Equetro). Weight neutral AEDs are lamotrigine(Lamictal), levetiracetam(Keppra), and phenytoin(Dilantin,Di-Phen,Phenytek).


Question of the Month: What type of seizure is described here: The person will stare (as they would in any absence seizure) but often is somewhat responsive. Eye blinking or slight jerking movements of the lips may occur . The answer is found HERE.

“Believe you can and you’re halfway there.”~Theodore Roosevelt

 May Fundraiser: Feel free to explore our fundraiser and pass the link to all your contacts. The focus of this fundraiser is to place 100 seizure service canines with 100 seizure survivors by November 11,2013. Will we make it? Well, that is up to you and every person viewing our fundraiser:


 Canines are waiting today to begin working with seizure survivors. Your help is needed today. Your donations are appreciated as well as your action to pass the link for this fundraiser to all your contacts.

Journal Jabber: When I suggest to seizure survivors and caregivers to make journaling a priority I am often asked “What information should be written into a seizure journal?” Today I will bring you an effective way to keep a seizure journal:

  1. The first page or section of your journal should include specific descriptions of each aura and seizure you, the seizure survivor, experience. I encourage you to get input from everyone witnessing these episodes. Don’t worry about naming the seizures at this time. For your journal you will label each seizure description A-Z. Events you are unsure of, give them a letter also.

  2. As you experience seizure events including auras and other seizure like events, write the date, the letter of description and a hash mark to represent how many of these specific event you have on that day. Example – seizure A four times a day – A-llll If no seizure events occur during a full day, happily place a big “0” on that date.

  3. Keep your journal up to date and bring it with you to all relevant doctors appointments. Relevant doctors would be your primary physician, therapist, mental health expert, neurologist, epileptologist.

Tip: a seizure journal can be complied in a regular notebook, calendar, journal,video or a combination of these tools.

 Resources for You

National Seizure Disorders Foundation

Positive Seizure Management Team


NSDF Library of Knowledge

NSDF Information Station

Your thoughts are important to National Seizure Disorders Foundation. What would you like to see in future newsletters from NSDF? Please let us know as we plan for these newsletters to become a powerful tool for your positive seizure management.

Peace and Power,

Founder, NSDF
Founder - National Seizure Disorders Foundation




10 Responses to NSDF Newsletter May 2012

  1. Thanks to this site here lately I would be a lost soul. Can not find a Doctor that I can talk to.
    Thanks again

    • I am glad National Seizure Disorders Foundation brings you some comfort. Please tell me more about yourself and your location. Working together I am sure we will find a good doctor for you. Any information you do not want listed in these public comments, please send directly to my email at

  2. ““When you feel like giving up, remember why you held on for so long in the first place.”~ Unknown”

    This is one great inspiration thought for people with seizure disorders.

  3. Hi Tonya, It was fun chatting with you last night. You too are an inspiration, you started this foundation and you kept it going as hard as it was.

    • Alison,

      I plan to keep it going as long as there is a need for peace in the lives of those living with seizure disorder.

      Thank you for stopping in and leaving your mark on NSDF and in my life.

      Peace&Power -

      Terrific Tonya Heathco

  4. Tonya big booboo!! You need to correct this please- urgently!!
    The seated upper body exercise is a Sparkpeople exercise – I only tell you its there and refer you to it – I cannot give permission for you to use Sparkpeople exercises on your web site -however – I guess its okif you acknowledge that its from them!!
    This may seem like a fine line but copyright is all important!!


    • Hey Me(lol)! -

      Thank you for pointing this out. I’ll get with the SP people and officially ask permission. I figured it would be okay because I am giving them more than acknowledgement I’m also giving them a bit of free promotion. Also, the video is on YT which would make it public domain, right? giving I see no where that I intend you gave me permission to use the exercise. I do inform the reader it is from SP and specifically from the team you have formed. I will “abide” and contact SP just to cover bases. This newsletter is also used in Positive Seizure Management Team on Sparkspeople so you are getting recognition in both places ! I appreciate you looking out for me. That’s what good friends are for, right?

  5. Hello Tonya:

    Firstly, I would like to thank you for your selfless and tireless work in making our world a better place for all who live with epilepsy.

    Congratulations with the first newsletter which is filled with great information. Furthermore, it highlights the need to share our knowledge with others.

    Thank you, Stuart Ross McCallum

    • Stuart,

      I really wouldn’t do the work without love and support from you and all others at National Seizure Disorders Foundation and NSDF Community. Thank you for stopping in and placing a precious comment on work I created for you.


      Terrific Tonya Heathco

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