Epilepsy Talk

Gratitude is the Attitude — Part 5 | March 30, 2011

There’s so very much to be grateful for…

All of you and the richness you have brought to my life…

The happy news you share in these times of stress and strife…

Your comfort, support and wisdom…

An abundance of generosity and caring…

The heartfelt love you all share.


  1. Your support and generosity to all of us has helped us in many ways! Drs., VNS, meds, Praises….It’s Your Turn!!! Your giving from your heart is deep from your heart. It helps me meet other things such as other stressors! Your generosity or giving makes me give to others more such as my own family and others!

    THANK YOU!!!!!


    Comment by Toni Robison — March 30, 2011 @ 3:52 PM

  2. YYYYYYYEEEEEEEEEEE HHHHHHHAAAAAAAAAA! Today was our best day ever in terms of number of viewers.

    I guess they like us! 😉


    Comment by Phylis Feiner Johnson — March 30, 2011 @ 11:39 PM

  3. Phylis, that is great!! How many viewers are there?

    I am grateful for everyone’s support.
    I am thankful for Phylis’s beginning gratitudes, showing love and caring for us.

    This is geeat!!


    Comment by ruth brown — March 31, 2011 @ 2:09 AM

  4. 227 viewers!!!!!


    Comment by Phylis Feiner Johnson — March 31, 2011 @ 1:03 PM

  5. I’m excited about going to Sally Komar’s in Charleston tomorrow. (Some of you may remember her from Epilepsy.com. We had a disagreement on line, took it to PMs, and subsequently became fast friends, emailing every day.)

    Last summer we had lunch together and we just clicked, as I knew we would.

    I can’t wait!


    Comment by Phylis Feiner Johnson — March 31, 2011 @ 1:07 PM

  6. I got a boatload to be thankful for, but I’ll just share a few.
    Number one. That Phylis started another G.I.T.A. as well as I.Y.T.
    That my Epilepsy awareness letter finally made it to the newspaper I wanted. I’ll find out Thursday if it made it.
    That when I need info, I just use the search box on Epilepsytalk. Phylis made a way for me to get info and tell a fellow about Neurontin today.
    The retreat I went on really re-energized me.
    I got a haircut today and I found a barber that can cut around all the lumps and bumps in my head without hurting anything.
    The surgeon said I can get a plastic [skull plate] to smooth out the lumps but I think I’ll pass. My lumpy head and big scar are conversation starters. I keep my hair cut very short, so it shows. If I let it grow out, you’d never know I had Brain surgery, but I’d rather talk about Epilepsy and how I was blessed.
    I’m thankful that people I know in Fl had a Run (motorcycle) to raise money for a friend’s daughter’s Epilepsy service dog, as well as for other people in need of them.
    I could go on, but I’ll quit there.


    Comment by Charlie — April 1, 2011 @ 12:27 AM

    • Charlie,

      Well, you’re really making progress on All fronts.

      DO tell your friend that Neurontin is great for NERVE pain but it’s prone to put some weight on. (AJ who is quite slim, is on Atkins now to battle the 20 ponds he gained.) On the other hand, the’s nothing quite as effective for nerve pain as Neurontin. (Did I spell it right?)

      Wish him good luck for me.

      And congratulations on the motorcycle fund-raising.

      Why not the skull plate? Too much bother and surgery? Or is the the obvious awareness? (Tough to miss, eh?)

      Keep on rocking!


      Comment by Phylis Feiner Johnson — April 2, 2011 @ 3:10 PM

  7. Phyllis, If this post is off topic, just delete, it.
    In the late 50’s I was diagnosed with epilepsy. The solution they gave my Mother was to put me in a State Asylem. So I spent 5 yr’s in a Michigan State Hosp as a guinea pig for Dr, Jeckel and Nurse Ratchet. LOL!

    In 2008 I was contacted by a writer(Hiedi Johnson) who had been reaserching and writting about the state hospital for several years. She had already contact another patient that was at the same time and on the same Hall (#18).
    Hiedi wanted to write a book about our time behind closed doors. So we got together(on line)
    putting information together.
    Hiedi passed away last year, so the book was never finished.
    But we have 54 page blog/forum.(with photo’s and links).
    My point about being off topic is that this is more about the treatment back then, than it is epilepsy. But I’m sure most people diagnosed with epilepsy back then were sent there.

    I’ll post a link if anyone is interested in reading it.



    Comment by Mike — April 1, 2011 @ 6:53 PM

  8. Mike, I am very sorry that you had to go through that. I do not feel that it is off topic. We express how we feel. Bad memories, nightmares, are important to the rest of us.

    I was diagnosed in the ’50’s too. My father had epilepsy so I was not put in an institution. If my father was not understanding I probably would have been put in an institution. My mother was not understanding.

    I remember Nurse Ratchet. She was in the movie “One Flew Over the Cukoo’s Nest.” That place was a horrible institution. So was what happened there.

    Let’s continue the conversation on “It’s Your Turn.”


    Comment by ruth brown — April 2, 2011 @ 12:47 AM

  9. Mike,

    Unfortunately,loads of people weres/are thrown in mental institutions because their epilepsy was/is mistaken for madness.

    There are loads of stories about it on http://www.epilepsy.com and I would love to write an article on it some day. (Epilepsy or madness?)

    Today there is still a problem and a prejudice and inappropriate behavior towards those with epilepsy.

    Police mistake seizures as violent behavior or illicit drug use and throw them in jail where they’re often denied their meds.

    It’s still a rabid situation of ignorance and misinformation.

    Look up “Hospital Abuse” here https://epilepsytalk.com/2011/01/27/hospital-abuse/

    And “Prison Abuse” https://epilepsytalk.com/?s=prison+abuse

    Do you think you have the strength to continue Heidi’s book?

    If so, tell us about it in “It’s YOUR Turn — Part 3” https://epilepsytalk.com/2011/03/30/its-your-turn-part-3/

    You’re always welcome here.


    Comment by Phylis Feiner Johnson — April 2, 2011 @ 3:45 PM

  10. Hello all you Thankful people out there. I’m thankful Mike shared his story and illuminated me about how some people are treated.My Grandpa was treated the same way, thereby starting the snowball of denial of my Epilepsy, by my father.
    I’m thankful I didn’t call that newspaper to findout what happened to my letter, because the entire paper was dedicated to cancer victims and cancer awareness. Such a horrible disease.I pray someday they’ll find a cure for both Epilepsy and Cancer.
    I’m Thankful I’ll get a chance to go to an Epilepsy Conference in NYC on May 15. My surgeon is speaking, He’s the most caring Dr I’ve ever met!
    I’m thankful for you all, and I keep you in my prayers.
    God Bless


    Comment by Charlie — April 15, 2011 @ 2:37 AM

    • Which doc is your surgeon?

      I’m soooooo excited for you. You’ll have to give us all the details!!!


      Comment by Phylis Feiner Johnson — April 15, 2011 @ 5:54 PM

      • Dr Werner Doyle was my surgeon. Quite an awesome man. I’ll share what I find out at the conference with you all.


        Comment by Charlie — April 15, 2011 @ 10:04 PM

  11. Whew. My concussion traumas are just about over…

    My black eye, cat-scratched nose and fat lip are gone. (Although that poor right knee got hit again!)

    I no longer feel pukey, dizzy or cross-eyed.

    AND, I’m going to start driving again tomorrow!

    One more bonus: My Blackberry hit the bricks along with me and is definitely dead. So, I got a new cell phone. YAY!!! 🙂


    Comment by Phylis Feiner Johnson — April 29, 2011 @ 9:59 PM

    • It seems that every time you get ‘knocked down’, you get back up again, you’re such an inspiration! I’m glad you’re doing better.


      Comment by Charlie — May 1, 2011 @ 11:47 AM

  12. Just in time for NYC and FACES! 🙂


    Comment by Phylis Feiner Johnson — May 1, 2011 @ 2:33 PM

  13. Hi Phylis,

    I did not know that you were that sick. I am sorry to hear it. I am glad that you are felling better now.

    My computer crashed 2 days ago. It was in one of my e-mails. I had to delete all of my e-mails. I miss what everyone said to me. Please write me and let me know what everyone said.

    Hubby, had to take everything out and put everything back in, plus a brand new security system. Apparently, the one I had quit working. This is a better one, so it will kick out all of the bad viruses, etc.

    I am back in now. Please write me, I love to hear from everyone.


    Comment by ruth brown — May 2, 2011 @ 12:35 AM

  14. Thank you Charlie,

    Glad to be back.

    1. Greatful that Phylis is well and ready to drive.
    2. Charlie is a good friend to everyone
    3. Greatful that I have my computer back
    4. Glad that I got most of my housework done. I could not sleep.
    5. Everyone here are my good friends.


    Comment by ruth brown — May 2, 2011 @ 3:30 PM

  15. Hi Phylis,

    Yes, I did get the links. Thank you.


    Comment by ruth brown — May 3, 2011 @ 12:08 AM

  16. This has been an awesome day and I wanted to share with y’all!
    I got a copy of my Epilepsy awareness ‘letter to the editor’ that got printed from a friend in Fl.
    I talked to a guy in the barber shop that I recommended to see my neuro at NYU. The fellow now has his seizures under control! PTL
    The hospital I sent requests for Epilepsy support groups or an awareness campaign has returned my email with some exciting prospects for an Epilepsy awareness venture.
    Blessing to all


    Comment by Charlie — May 6, 2011 @ 2:40 AM

    • Charlie, I’m so proud of you. You’re a shining example to us all. How big is the hospital? Do you plan on starting a group combining different hospitals and rolling it into one?

      I know these questions are premature, but when my friend Sally started her brain injury group in Charleston (much easier in a big city), she recruited people from all over the place. (No, I don’t know how she did it.)

      Just a thought…

      I’m SO proud of you! Hats off to Charlie!


      Comment by Phylis Feiner Johnson — May 6, 2011 @ 12:01 PM

  17. I am so grateful and over the moon that I was able to go to Sunday’s big epilepsy conference at NYU.

    And equally excited that I got to meet Charlie (who’s as wonderful in person, as you would expect) and his terrific wife Toni.

    I got to meet my “idol,” Orrin Devinsky and all in all, the conference was awesome.

    And spending a few hours with Charlie was even better! 😉


    Comment by Phylis Feiner Johnson — May 16, 2011 @ 3:23 PM

  18. Hi Everyone,

    1. I am grateful for not having seizures yet.
    2. I have friends who surprised me and came over unexpectly did my yardwork. A really nice present.
    3. I have not fallen down today.

    I hope everyone has a great day!!


    Comment by ruth brown — May 17, 2011 @ 4:35 PM

  19. Thankful? You better believe it!
    I was blessed to go to my first Epilepsy Conference, where I learned a whole bunch.I got to see some of the cutting edge Epilepsy treatments coming down the pipe that might put an end to having to live a lifetime with Epilepsy. I got to meet Phylis, a super person, and inspirer of our little family here. What a special lady.
    It’s so nice that all the people I told I was going, asked about Epilepsy when I saw them today. I had a lot to tell them, that’s for sure. Now is my time to do something with what I learned. I’ll be getting in touch with a person at the hospital to start some sort of support group. I’m thankful that eventhough I’ve been seizure free for 19 months, I still know what it’s like to have multiple daily seizure’s, and now want the world to know about the 50 million of us out here in the trenches.I’m thankful that someone showed love to Ruth and cleaned up her yard.


    Comment by Charlie — May 18, 2011 @ 2:54 AM


    A weekend off. (Well, mostly.)

    I read 3 books on my Kindle and vegitated. What a glorious feeling.

    Did you folks have a good Memorial Day weekend?


    Comment by Phylis Feiner Johnson — May 31, 2011 @ 1:04 PM

  21. I am grateful that this is payday. We had run out of money.

    I got up this morning.
    There will be lot’s of shopping today. More food!!
    Today, I have a lot to be grateful for.


    Comment by ruth brown — May 31, 2011 @ 1:17 PM

  22. Yee Haaa! Tomorrow is my birthday. 58 and feeling great!!!


    Comment by Phylis Feiner Johnson — June 8, 2011 @ 3:17 PM

  23. Hi everyone, My 5 grateful things.

    1. I am thankful to Phylis for making this website. It makes us feel right at home.
    2. I am thankful that we are all like family.
    3. I am grateful that this will be a nice sunny day.
    4. I have a great family.
    5. I have friends that help me out when I need it. For instance, one of my friends did my yardwork and it looks great.


    Comment by ruth brown — June 12, 2011 @ 2:36 PM

  24. And I am grateful for you Ruth and the rest of our “family.”

    (But I wish someone would do my gardening and dig all those holes for planting!) 😉


    Comment by Phylis Feiner Johnson — June 12, 2011 @ 4:16 PM

  25. Phylis, they did not dig holes for my gardening. I will have to do that on my own. They made our front yard presentable. That was great!! Friends, like everyone here are great!! I am right at home, here.


    Comment by ruth brown — June 13, 2011 @ 1:23 AM

  26. I’m so excited, that I just have to share with you all,
    The head of the group that includes my neurologist and brain surgeon has asked me to take part in a follow up research study to check the progress or decline in a person’s life after surgery. they’re gonna wire me up and test how my brain is functioning, such as memory loss, etc. On a funny side of this test. It could show that my memory is fine and all the chores I told my wife I forgot about, will get me in trouble. ;o)


    Comment by Charlie — June 15, 2011 @ 2:44 AM

  27. Charlie, you are one remarkable guy…which I’m sure they’ll see! AND you get to work with my hero (Orin Devinsky), plus your own brain surgeon. How much better could it be?

    But you WILL get in trouble with Toni! 😉


    Comment by Phylis Feiner Johnson — June 15, 2011 @ 1:37 PM

  28. Why would Charlie get in trouble with Toni, Phylis?

    Charlie, are you really going to have brain surgery?

    It is not for me, but everyone is different. It works for a lot of up with epilepsy.

    Phylis, can I put in poems that has nothing to do with epilepsy?

    Hope everyone is all right.


    Comment by ruth brown — June 15, 2011 @ 4:20 PM

  29. Toni hauls a very high line. “No excuses. No, “I forgot.” Now Charlie will SURELY have no excuse! 😉

    (I was just joking about Toni!)

    Charlie had very successful brain surgery 2-3 years ago…that’s why he has a mesh screen over part of his skull. But the reason he’s part of the control group is because he had such successful brain surgery.

    (I’m not trying to sound like a smart aleck, but I’ve asked him a lot of questions over the last year!)

    Ruth, the general rule for that column is epilepsy. But I’m sure you can tie it in some way… 😉


    Comment by Phylis Feiner Johnson — June 15, 2011 @ 7:00 PM

  30. I cannnot tie it in unless I write a new poem about epilepsy. I do not change my poems. I have put my poems in 2 other epilepsy support groups. They did not have to be about epilepsy.

    Okay, that is your rule. I will abide by it.

    I will put one in then, when I write a poem about epilepsy. I will look and see if I have another poem about epilepsy. I think I do.

    I wish I had known about Charlie’s surgergy. I am glad that it was successful.


    Comment by ruth brown — June 15, 2011 @ 10:15 PM

    • Yes, Ruth, I wish I had known about this kind of surgery years ago, also. However, I was being treated by dr’s that only dispensed medicine, not information. That’s why I want the world to know that for some of us with seizure focus’s in one area, there may be an oportunity to be seizure free. that’s also why I’m willing to let them do tests on me.
      By the way,I got your joke, Phylis, dont fret.
      As for thankful, last night,I got to see the sun set,and the moon rise. This morning at 5 AM I got to see the moon set, the sun rise, and catch some fish.
      Love to all.


      Comment by Charlie — June 16, 2011 @ 11:44 AM

      • Sometimes just to watch the miracles of nature makes everything else feel better. We are all so fortunate to be here..


        Comment by Phylis Feiner Johnson — June 16, 2011 @ 2:46 PM

  31. Hey Ruth,

    About not changing your poems…is it a matter of subject matter and content…or is it that you don’t believe in editing one thing to become something else?

    As writers, many of us cheat sometimes. But don’t tell. 😉


    Comment by Phylis Feiner Johnson — June 15, 2011 @ 10:49 PM

  32. I didn’t mean to deceive him,
    but how was I to believe
    when he said he loved me true,
    he’d “love” my epilepsy, too?


    Comment by Phylis Feiner Johnson — June 15, 2011 @ 10:52 PM

  33. I do not cheat on my poems!! It is a matter of subject and content. I definetly will not edit my poems to become something else.

    Ask Maggie if she would cheat on her poems.


    Comment by ruth brown — June 16, 2011 @ 1:30 AM

  34. When I was in my 20’s, they did lobectomies (sp?). That was the only surgery back then. I worked for a few weeks in a nursing home. There was a young man there who had the operation.

    He was not able to speak or go anywhere without someone going with him. He would go in his wheelchair and escape the nurses. I was proud of him.

    It was a shame that they treated people with epilepsy that way. That is why I have always been afraid of surgery, for myself. It is successful today, in most cases.


    Comment by ruth brown — June 16, 2011 @ 5:53 PM

  35. Yeah. Just think of what brain surgery did for Sylvia Plath. 😦


    Comment by Phylis Feiner Johnson — June 16, 2011 @ 6:58 PM

  36. Who is Slyvia Plath?
    What did the brain surgery do for her?


    Comment by ruth brown — June 17, 2011 @ 7:58 AM

  37. She was a very brilliant poet. And she died by putting her head in the oven with the gas turned up high. 😦


    Comment by Phylis Feiner Johnson — June 17, 2011 @ 2:14 PM

  38. I am sorry to hear that!! A great poet was lost.

    I am thankful for coffee. I kept falling asleep in my chair tis morning. I asked my son to fix me some coffee. He did and now I am awake.


    Comment by ruth brown — June 17, 2011 @ 5:27 PM

  39. im greatfull that I had a great time with my mother yesterday. She called me in morning and asked me if I was doing anything that day. I told her no.

    She then asked me if I would like to go to Durham for lunch. I was happy that she had asked me. We had some nice conversation, and then went to a bead store. She needed to buy something.

    We then went to TJMAX. She bought me a shorts. I had none that fit anymore. I had slimed down to normal weight. Then she also bought 2 nice dresses to wear for dance or church.

    Im very greatfull for her.


    Comment by jennifer schnegg — June 18, 2011 @ 2:59 PM

  40. I am grateful that a person on the internet is having a Bible discussion with me.

    If any of my friends here would like a Bible discussion, I would be grateful.
    I am thankful that we have the Bible.


    Comment by ruth brown — June 18, 2011 @ 5:27 PM

  41. Thank you to Mike for recommending epilepsytalk.com on epilepsy.com — which is my second favorite site (after this one!) 😉


    Comment by Phylis Feiner Johnson — June 20, 2011 @ 4:29 PM

  42. Phylis. I see you a lot on CWE, too. That is my second favorite.


    Comment by ruth brown — June 20, 2011 @ 7:01 PM

    • I think that’s where I met you. But CWE is my last choice, because they really don’t “need” me and it seems they argue (intelligently) a lot.

      One upmanship (trying to prove the other person wrong) is not my style…and that seems to be what certain people (surely not YOU) seem to do. 😦


      Comment by Phylis Feiner Johnson — June 20, 2011 @ 10:44 PM

  43. Phylis, I have recently seen you on CWE. I am not critizing you. You add a lot of important research that you have here to CWE.

    Do not worry, we are not going to leave epilepsytalk for CWE. CWE is not a family.

    You make this a family that we feel at home. Does everyone agree with me?


    Comment by ruth brown — June 21, 2011 @ 2:15 AM

  44. Well, I certainly view us as family…which is pretty much what Mike said in his post on epilepsy.com. I’m happy you feel that way and I’m proud to be part of the family.


    Comment by Phylis Feiner Johnson — June 21, 2011 @ 12:30 PM

  45. I have to share with our little family here, that I’m Thankful I was able to partake in a reaserch project for people who had Epilepsy surgery even though it was a little odd. Lots of memory tests, sketching, word games, puzzles, and distraction tests! I pray it will help someone, somehow.
    Im also thankful that July 5th will be one year that I’ve been back to work since my Dr. cleared me to go back.
    Blessings to all


    Comment by Charlie — June 26, 2011 @ 2:18 AM

  46. Now that 1-year anniversary is something to CELEBRATE!

    Happy Anniversary, Charlie… 🙂


    Comment by Phylis Feiner Johnson — June 26, 2011 @ 2:45 PM

  47. Hi Charlie, Great to see a happy anniversary. Hope you have fun on that important date. Celebrate.


    Comment by ruth brown — June 28, 2011 @ 8:22 PM

  48. Another thing to celebrate, we’re #1 on Yahoo. Before EpilepsyTalk.org
    Talk About It
    Epilepsy Talk Radio Show

    And then, thanks to Mark, we’re #4 as well as #1!


    Comment by Phylis Feiner Johnson — June 28, 2011 @ 11:36 PM

  49. I’m thankful I was able to be part of a research project that help understand the before and after effects of epilepsy surgery. The researcher said my testing was very helpful. PTL


    Comment by Charlie — July 9, 2011 @ 1:16 AM

  50. You rock Charlie…both inside and out!

    I’m grateful for Mike Farnum’s help with a new article…
    I’m grateful that I’ve been so productive…
    and I’m grateful for AJ’s killer grilled chicken!!! 😉


    Comment by Phylis Feiner Johnson — July 9, 2011 @ 2:00 PM

  51. im greatfull that I had a good date a few times. The only thing is, that I found out, that he is an illegal. My, I hate it. I guess one shouldnt date hispanics. He says he has been here in the states 14 yrs. What do I do?


    Comment by jennifer schnegg — July 9, 2011 @ 3:07 PM

  52. I’d say to enjoy your time with him. You’re not going to marry him…are you? 😉


    Comment by Phylis Feiner Johnson — July 9, 2011 @ 3:46 PM

  53. no im not.


    Comment by jennifer schnegg — July 9, 2011 @ 4:39 PM

  54. he is a veteranarian specialist in winston salem. He works at an emergencey vets office, 3rd shift.

    Tonight, we are going swing dancing.


    Comment by jennifer schnegg — July 9, 2011 @ 4:44 PM

  55. He, came with a work permit, and then tried to renew it, but there is a limit of 5 yrs to work here with a work permit.


    Comment by jennifer schnegg — July 9, 2011 @ 4:47 PM

  56. The dance was wonderfull, had a blast. So did he.

    Its too early to tell if I will marry him. He did say, one doesnt nessessarilly have to be married to be a happy couple. Its just that one has to commited to each other.

    This time im not going to give up whats important to me:music, dance, music practice, and computer, and friends.

    I can hold a decent conversation, not sit in silence.

    I’ll keep you all updated.


    Comment by jennifer schnegg — July 10, 2011 @ 6:25 PM

  57. oh, yea, and church.


    Comment by jennifer schnegg — July 10, 2011 @ 6:26 PM

  58. Oh Jennifer, That’s FANTASTIC!

    I must admit that I agree with him. (Name?) Unless you’re planning on having children, marriage is not necessary. I always knew that I didn’t want to have kids (horrible childhood, lousy parents, no positive role models) and I didn’t want to get married.

    But Arthur came from such a (traditional) happy home, that he insisted upon marriage as a commitment.He said if I wasn’t willing to commit to spending the rest of my life with him, he was going to “move on.”

    I was scared to death, but I didn’t want him out of my life so, finally, after putting up 100s of roadblocks (I even made him meet my whole horrid family, in the interest of “full disclosure”) the word “yes” came out of my mouth.

    But that was not before we had many talks about individuality, independence, pursuing dreams, ideas and interests, sharing, compromising, etc.

    What I’m trying to say is, you don’t have to be married to be committed and 100% in love. Follow your heart and the rest will take care of itself…


    Comment by Johnson — July 10, 2011 @ 6:44 PM

  59. Everyone calls him Quique. He has a nickname for me too: Jennita. Its spanish for Jenny.

    I dont plan on having children, as far as I know. I would be happy with little foo foo dogs. He has 2. A chuaua( spelling?), and another type that is also that small dog. Very well behaved.


    Comment by jennifer schnegg — July 10, 2011 @ 9:10 PM

  60. Everyone, this is a most important short message. My computer will be down for 2 days. A whole program came into my computer. I saw it as it came in. Hubby took it out.

    He has found out that my security program is only working somewhat. He is going to have to take everything out of my computer and I will be down for 3 days. I have gotten out of FB. I believe it came from there. I will get in contact with you as soon as I can.


    Comment by ruth brown — July 11, 2011 @ 8:52 AM

  61. I am thankful to say that my computer is back on. It is not working completely but it is working..

    I am thankful that I have good friends here. Where is everyone? I know you have a lot to be thankful for.

    I am glad that I awoke to what is going to be a beautiful day. It is the 80’s here until this weekend, then back to the 100’s.
    I am thankful for my other friends who live in town here.They understand my health problems.


    Comment by Ruth Brown — July 14, 2011 @ 1:12 PM

  62. I am thankful for the exquisite roses Terry sent me.

    I am also thankful for Terry’s book:

    “A Great Place for a Seizure”


    Maggie’s book of poetry “Broken Consciousness: Reflections of an Epileptic:


    And Tiffany’s brave documentary “The Sacred Disease”



    Comment by Phylis Feiner Johnson — July 14, 2011 @ 2:11 PM

  63. im greatfull for my father, he is taking me to the animal shelter to see if they will let me volunteer.

    Im also greatfull to be able to tell someont what epilepsy is. I now have a walking buddy. We will walk our dogs everyday together.

    I hope the hospital will let me volunteer, as well as goodwill.


    Comment by jennifer schnegg — July 14, 2011 @ 2:55 PM

  64. From the EFEPA (Epilepsy Foundation of Eastern PA):

    Dear Phylis

    I hope this finds you well. Alli and I discussed your suggestion of starting a support group in Chester County. Per your article on epilepsytalk, I know you understand the value in the support individuals find by attending these meetings.

    We recently have received a few calls from interested participants about the need for a group in the Delaware County-Chester county areas and believe your timing couldn’t be any better.

    An administrator at Riddle Hospital reached out to us about your inquiry about starting a group at the Hospital and in an effort to help, we contacted Joyce Liporace. Joyce is an epileptologist, who is director of the Women and Epilepsy Program at the Center for Neuroscience at Riddle, and has been involved with the Foundation for many years.

    Joyce Liporace, MD, is very enthusiastic about facilitating a support group at Riddle. She facilitated a women and epilepsy support group for EFEPA years ago and we are very interested in having her expertise to help launch the group.

    She will be a draw for the group and is a knowledgeable and excellent facilitator. If it is okay with you, we would like to collaborate with you, Joyce, and any other strong epilepsy advocates to start a Chester County Support Group.

    We look forward to hearing from you.


    Education Coordinator


    Comment by Phylis Feiner Johnson — July 19, 2011 @ 5:57 PM

  65. hi, im greatfull for my new boyfriend, Enrique. He is a vet specialist at an emergency hospital. He has already seen the many seiz. that I have. It didnt scare him away. He works 3rd shift, and for 10 hr, so I only get to see him on friday. He is off then. He likes dogs, and also has 2 “foo foo” dogs, he calls them. A chuahua “choco”, and a japenese chin, “chibi”

    Check out my facebook, jennifer schnegg, and his Enrique mercado


    Comment by jennifer schnegg — July 20, 2011 @ 2:14 AM

  66. MORE to celebrate. Yesterday was our BEST day ever!!! 🙂


    Comment by Phylis Feiner Johnson — July 20, 2011 @ 1:52 PM

  67. hi, another great day! My mother invited me to go with her to Durham to have lunch with her. Im very greatfull for that. Music lesson went good today, my music studio is going to play down town at a coffee shop. Its going to be great. .


    Comment by jennifer schnegg — July 20, 2011 @ 7:29 PM

  68. Hi Jennifer, that is great. Let us know how it goes. That is something to be greatful for!!

    I am greatful that we had our house sprayed for spiders today. We have had black widow spiders, as well as the gray ones.

    I am glad that Jehovah gave us the Bible We can live according to his will, imperfect as we are. He loves us.


    Comment by Ruth Brown — July 20, 2011 @ 11:48 PM

  69. hey, it went great.

    my mother called me in the morning to see if I still wanted to go. She didnt since it was hot. I was all ready and waiting at the door waiting for her. It was then 1 hr late that she didnt come yet.

    I finally called her to see what was up, and she told me that she had called. I dont always hear the phone. I was upset, that she said it was too late to go. She had a class that she wanted to go to later the day.

    My father called me to tell me the same thing. I had told him, I hate it that I dont have the best hearing. Im hard of hearing as it is.

    My mother had decided to go do errands that she needed to do, since I didnt call her to say that I still wanted to go.

    I was supprised to hear the phone, and she was on. She had told me, that she was done early. We could go anyway. If we hurryed, we could be able to get done what we wanted.

    We didnt get to go eat lunch before we looked for cloths. She didnt have time to go buy the beads that she wanted.

    We we decided to go shop for cloths first, then eat. Well, we did go to TJmax. They didnt have much of shorts, that werent too short for me to wear at my age. Im 38.

    We did look for some dresses, for dance and church. She bought me 2 skirts, 1 dress and 2 nice shirts.

    I like going cloth shopping with my mother. She has a good taste in cloths. I do too, but dont know how to put different tops and skirts together to where it doesnt look goofy.

    I’ll take some more photos and somehow figure out to send them to all of you. Email, maybe? Anyway. all was good, my mother did make it to her class.

    I told, that I was greatfull, that she decided to go anyway.

    I did have many complex partial seizures at TJ max. It was funny. I was looking for some shorts, and there they came, one right after the other. My mother told me that the woman next to me didnt even seem to notice them. Maybe she thought I was laughing at some funny thought.

    I make this funny like laugh during my complex seiz.

    I saw my boyfriend today. We had alot of fun together. He is very sponteous. I love him very much. He has what my last boyfriend didnt.

    Im greatfull for all this. It has been wonderfull, this whole experiance that day.

    Im happy and greatfull for all of you, my music, life, my challange. Forgive me, my spelling is bad today.


    Comment by jennifer schnegg — July 23, 2011 @ 3:26 AM

  70. I’m just bursting with gratitude, for:

    1. Being invited to start an Epilepsy Support Group at a local hospital

    2. Having TWO of our best days on record last week

    3. Starting our book

    4. Spending all of Sunday in my P.J.s


    Comment by Phylis Feiner Johnson — July 25, 2011 @ 11:52 AM

  71. Phylis, you are having a good time. I am glad that you could start an Epilepsy Support Group at a hospital.

    1. I am grateful that I can do research on my health problems.
    2. I am grateful that people understand me.
    3. I am glad that I can bring Alzheimer’s “out of the closet” and educate people.
    4. I am resting tonight.


    Comment by Ruth Brown — July 26, 2011 @ 4:12 AM

  72. Hi, im gratefull that I had a good time and opportunity to go on a church trip tuday. I had a blast. Im also greatfull that my mother took the time to take my dog outside while I was gone. but,

    am not pleased that after I told her how greatfull I was, the first thing that came out of her mouth, was what she found wrong with my house. Not one your welcome, or “how was your trip.”

    Well, she must not liked to do this for me, or think that I would be greatfull.

    that makes me mad.

    I probably should have writen this on “its your turn 2”. I just couldnt get to that page.

    Anyway, im greatfull for all of you.


    Comment by jennifer schnegg — July 31, 2011 @ 12:00 AM

  73. I am grateful that Charlie had a great check-up this week.

    I am happy that the local epilepsy foundation is considering having their summer camp kids contribute to our book and listing it on the cover page of their next newsletter.

    I am thrilled to be taking a half day off!!!


    Comment by Phylis Feiner Johnson — August 7, 2011 @ 3:29 PM

  74. I’m truly greatful for the excellent Dr visit I had this past Thursday! My Dr was so impressed with my recovery. He said he wished he could have helped me years ago. (Those were the years I was floundering around with Dr’s more interested in pushing pills than helping people). This is why I think all of us in the Epilepsy community need to be more proactive. (I sure wasn’t!)
    I’m thankful I was able to make my first solo trip to NYC. (Nobody had to worry about me falling off the train platform, because of a seizure. I’m thankful my Dr is in no rush to get me off the 2 drugs I’m on.(I was on 6 before the surgery). I’m Thankful I got to meet Phylis again.(she’s such a wonderful person)
    I’m thankful I made it home safely and didn’t get lost.I’m thankful that we’re so blessed to be able to function and use and write on the computer.
    I’m saddened to see that so many people are beaten up by this Epilepsy scourge that they can’t function any longer and need constant care. I pray for them as well as all of us.


    Comment by Charlie — August 7, 2011 @ 4:36 PM

  75. Charlie, are you going to a special hospital to take care of you. I have never been to NY.

    I am thankful that my story, with a great deal of help from Phylis, if finished.

    I am thankful for the beautiful weather that we are having.

    I am thankful for this day of life that we can appreciate being here one more day.

    I am going to go watch my golf game now.


    Comment by Ruth Brown — August 7, 2011 @ 8:32 PM

  76. Hi Ruth,
    I was just going for my bi-annual check-up at my Neuro. However, the Hospital that took care of me almost 2 years ago is fantastic! NYU in New York City.
    Im happy your story is going well.
    Blessings to you


    Comment by Charlie — August 7, 2011 @ 8:54 PM

  77. How did your check up go?

    My story is now finished, thanks to Phylis.


    Comment by Ruth Brown — August 7, 2011 @ 10:50 PM

  78. I’m grateful the weather is good for our local epilepsy golf fundraiser. (Especially after all these monsoons.)

    I am glad I was able to get many vendors to contribute. (The best was Morton’s Steak House which donated 4 bottles of wine and two $100 gift certificates!)

    And I am so happy that Sally’s eye surgery went well. She will finally be able to see properly again.


    Comment by Phylis Feiner Johnson — August 23, 2011 @ 1:57 PM

  79. im sorry that I have not been on in a long time. I have been doing rough. Im starting to fall again. I have trouble sleeping at night.

    Im greatfull I have not been very hurt. Im greatfull Enrique isnt afraid of my seizures. Im greatfull that his 2 dogs get along with my dog.

    Im greatfull that I didnt fall today.


    Comment by jennifer schnegg — August 23, 2011 @ 3:21 PM

  80. Hi Jennifer,

    I have been falling down, too. I haven’t today. Tell your neuro. He told me yesterday to use my walker. Do you have one?

    I am thankful that Jennifer is with us.
    I am thankful that I am on a med for my advanced dementia.
    I am thankful for another day of life.
    I am thankful that Jennifer has someone to help her out.

    HUGS to Jennifer.


    Comment by Ruth Brown — August 23, 2011 @ 6:00 PM

  81. And I am thankful for you.


    Comment by Phylis Feiner Johnson — August 23, 2011 @ 8:47 PM

  82. Thank you Phylis. I know you were talking to everyone here.

    I am thankful for everyone in our family.
    I am thankful that my husband is not on the internet as much.
    I am thankful for our meds and doctors for all of our health problems. They keep us going longer.


    Comment by Ruth Brown — August 25, 2011 @ 8:30 AM

  83. im greatfull to be able to go volunteer today. im also greatfull that 3 church members are also volunteering where I am. One of them is going to pick me up this morning. Im going in at 11am to have lunch there and socialize for lunch and then have to start at 12 till 4


    Comment by jennifer schnegg — August 25, 2011 @ 2:34 PM

  84. im gratefull that yesterday was a wonderfull volunteer day. I volunteered at the hospital, 12-4pm I will do it every thursday. Im also greatfull that there is a woman from my church, she picks me up. We go at 11am, we eat (we get a free meal) and socialize 1 hr before we start.

    Im greatfull that Enrique cooked lunch for me today.


    Comment by jennifer — August 27, 2011 @ 1:03 AM

  85. Hi Y’all, I haven’t been around much because I think I screwed up my wordpress acct and deleted myself from everything, Oh well. I’ve been writing, but it won’t post. (I’m sure it has nothing to do with me being computer challenged, haha)
    I am so proud to be part of this tough little family Phylis has started. Some people use the term “We get knocked down but get back up again” very lightly, but this little family truly has gotten up many times from being knocked down! I very happy for Jennifer with the change for the better in her life, and for the perservering spirit of all of you. I’m writing with the threat of any minute the power might go out because of the Hurricane. Y’all stay safe and maybe this will post.
    God bless.


    Comment by Charlie — August 28, 2011 @ 11:51 AM

  86. Hi Charlie,

    I am so glad to hear from you. I am thankful you are all right. I called my daughter and she and her family are all right.

    It did post. What is the name of your website? What is the address.? Maybe I can add my two cents.

    I have been thinking about starting a website. I will probably do what you did.

    Everyone answer, please, I want to know how everyone in our family is?



    Comment by Ruth Brown — August 29, 2011 @ 12:01 AM

  87. Hi Ruth, Im ok. We didnt get much rain, but we did get some strong wind. Enough to break some branches off of some of the small trees.

    My cat did return after 3 days. He had gotten out the door, and I couldnt find him till sunday. I was so worried for him.

    Im greatfull for him coming back home.

    Im greatfull .


    Comment by jennifer schnegg — August 29, 2011 @ 1:16 AM

  88. Hi Jennifer, I am so glad that you and your cat are all right.

    Animals can sense these disasters before they happen. Your cat probably went to higher ground or a good hiding place during the storm.


    Comment by Ruth Brown — August 29, 2011 @ 2:35 AM

  89. Jennifer,

    I also talked about it in Talk About It!! Charlie is all right. You might want to go over there and talk to her. I hope to hear from more of our family, today.


    Comment by Ruth Brown — August 29, 2011 @ 2:13 PM

  90. Hi, I have some great news, that I found a way to go volunteer at the hospice store. we had a flyer at my church saying that the store needed help. I quickly called the phone number.

    I left my phone number with them, if there were anyone that comes from my side of town.

    lo and behold, someone called and said they would be more than happy to pick me up and take me home.

    I will start this coming up monday. Gosh she would pick me up at 8:30am. Thats early.

    Im greatfull for everything coming together. Yes it took time to find places to volunteer at, but the effort paid off.

    Im greatfull that I have many things to do with my time.

    mon. at hospice, wed is music lesson, and get groceries, thursday is volunteer at the hospital, friday I will see my wonderfull boyfriend. Then sunday is church. Oh yea, I also have dance 2 x month on saterday.

    All this took me 8 mo to get together, from having nothing to all this.

    Im greatfull for the support of others, here, family, and church.


    Comment by jennifer schnegg — August 29, 2011 @ 5:40 PM

  91. It sounds like everything is back to normal and then some. I am glad to hear it.


    Comment by Ruth Brown — August 29, 2011 @ 6:20 PM

  92. I am Super Thankful that we have Electricity again! I’m thankful for the crews from Missouri that came all the way to New York to Help get the power back on. Im thankful that none of y’all got hurt during the storm, and I’m thankful to be part of this encouraging little family.
    God Bless


    Comment by Charlie — August 31, 2011 @ 12:06 PM

    • Yay! Charlie’s back. That’s one thing I’m grateful for. I’m also grateful to be back also. And for all of your concern, caring and supportiveness. Especially your capital letters Ruth! 😉


      Comment by Phylis Feiner Johnson — August 31, 2011 @ 1:40 PM

  93. Hi Y’all,
    There has been so much to be thankful for! We cleaned up the mess left by the hurricane and We’re all safe. I’m thankful for all of Phylis’s latest post’s. That “Kindling” one was extremely interesting. I was able to tell a friend about the “Social Security, winning secrets” post.
    I’m thankful for the beautiful days we’ve been enjoying lately, even if it was just so we could clean up the mess in comfortable weather. I’m thankful I’ve been able to help people with my truck even though I’ve been back driving less than a year.
    I hope you’re all well and may God Bless you.


    Comment by Charlie — September 13, 2011 @ 2:01 AM

  94. Where did all our Thankful people go? I know you’re out there. Hows it going?


    Comment by Charlie — October 11, 2011 @ 11:05 PM

    • They forgot they were thankful!!!

      Guess what? We had our best day last Thursday and our second best day Friday!

      I’m thankful that more people are reading Epilepsy Talk and (hopefully) learning.

      I’m thankful that Mike took over the website while I was on vacation. That was a big relief.


      Comment by Phylis Feiner Johnson — October 13, 2011 @ 5:09 PM

  95. im greatfull that im feeling better after my long walk.

    Today was such an overwelming stressfull, over emotional day. There has been alot going on this past 5 days.

    im greatfull for my friends, that they sometimes listen to my frustrations.

    im greatfull for my dog quincey. He gets me out and makes sure I get my walk for the day.

    im greatfull for charley, my cat, that makes sure I get to bed for a good nights rest.

    im greatfull for ellie, my other cat, for keeping my lap warm.



    Comment by jennifer — October 12, 2011 @ 4:16 AM

  96. I’m so thankful that all these months of talking and working toward establishing an Epilepsy support group in my area has finally come to fruition !!!! I hope Phylis’s computer doesn’t melt from all the people I’m going to tell about Epilepsytalk!!!


    Comment by Charlie — October 17, 2011 @ 5:53 PM

  97. YAY Charlie. Go For It!!! 🙂


    Comment by Phylis Feiner Johnson — October 17, 2011 @ 6:44 PM

  98. im greatfull that court today went good. Enrique is ordered to stay away from me, that I have the right to call the police if he comes anywhere near me.

    The weather is nice here.

    Im greatfull for my friends here. Im greatfull, for my friend, she supprised to see here. She brought me some of her homemade ginger cookies.


    Comment by jennifer — October 17, 2011 @ 9:21 PM

  99. YAY! The Epilepsy Support Group finally got going. And we had a pretty good turnout — 25 people in the gushing rain!


    Comment by Phylis Feiner Johnson — October 24, 2011 @ 1:20 PM

  100. That’s fantastic!! Imagine how many people will turn out in the sunshine


    Comment by Charlie — October 24, 2011 @ 2:47 PM

  101. im thankfull for: I have such a generous mother, she gave me 2 nice sweaters and shirt of hers, that she doesnt wear anymore. Im greatfull for both of my parents. They do so much for me. Im greatfull for my sisters too.

    Im greatfull that a church member was able to move into an assisted living home. I will not be able to see her as often, since I will have to arrange transportation. When she was in rehabilitation, she was just down the street from my appartment. I would see her everyweek after church. Now I may not be able to as often. She enjoyed my visits.


    Comment by jennifer — October 24, 2011 @ 9:15 PM

  102. im greatfull, I made some delicious cookies. Im perfecting my baking skills. I bake from scratch. Im greatfull that im going to volunteer to make clowns for the children at the hospital. Im greatfull that my friend is willing to take me to this for 2 more weeks. In the meantime im going to ask if anyone would be willing to take me there. I’ll be willing to pay some of the gall money. Well, we will see.


    Comment by jennifer — October 25, 2011 @ 4:15 AM

  103. im greatfull for: I made 2 clown dolls for the hospital.

    2. aldies had syllicon baking pands for 2.99 $ only. They are usually around 10 $

    3. I like to cook now. It is fun to see what else I can cook or bake from scratch.

    4. I found a ride to my music lesson tomorow, since my parents are out of town.

    5. I may have a ride to the hospital, to make the clowns.

    6. im feeling good.

    7. Im making new friends

    8. im volunteering monday and satterday ar the hospice flee market: Tuesday making clowns, Thursday at the hospital.

    9. I have a walking partner

    10. I am deciding to try the meds for anxiety. My emotional state is fluctuating alot. It could be because im doing something new, and alot has been going on.


    Comment by jennifer — October 25, 2011 @ 10:42 PM

  104. YOU GO GIRL! What a tremendous change! 🙂


    Comment by Phylis Feiner Johnson — October 26, 2011 @ 4:48 PM

  105. im greatefull for 1. today is friday and nobody is needing me today

    2. im going to stay home and do house work

    3. my finger is heaing, I got a nasty cut on the pad of my finger with my garden clippers while clipping flowers, unfortunatelly its the one that has to push the guitar string down, so no playing for me

    4. saterday is when I dancing again, hopefully my cut will have healed enough to not hurt. With swing dancing, we hold each other’s hands to do the dance.

    5. I bought me a white christmas tree from hospice flee market for only 10 $. Its a 6 1/2 ft one.

    6.its a beautiful day today.

    7. Tuesday I made 3 clown dolls for the hospital.


    Comment by jennifer — November 11, 2011 @ 2:01 PM

  106. Sounds wonderful. Just watch that swing dancing girl! 😉


    Comment by Phylis Feiner Johnson — November 11, 2011 @ 2:35 PM

  107. YAY! A second meeting of the epilepsy support group!

    Now I’m down in South Carolina visiting Sally (some of you know her) and going to a charity fundraiser tonight…a hockey game and silent auction.

    Just to be part of all this… (And I got a real pretty purple bracelet!)


    Comment by Phylis Feiner Johnson — November 18, 2011 @ 2:05 PM

  108. hi everyone,

    im greatfull for1: a day off from volunteering
    2. friend took me grocery shopping
    3. I didnt get hurt bad from a fall this morning, just a big bruising on my right cheek, and scratch and is swollen too. Some might say that is bad, but to me anything that is not broken isnt bad.
    4. im greatfull my twin calls me everyday


    Comment by jennifer — November 18, 2011 @ 8:01 PM

  109. Hi Jennifer,
    It’s so cool to see you as such a thankful person. You’ve come a long way and we’re all so proud of you. Keep it up.
    I’m thankful to be part of Phylis’s little family, here, and pray for all of us.
    I’m going to share my favorite Bible verse from Romans 5 because it describes many of our attitudes so well.
    …… “we know that suffering produces perseverance; perseverance, character; and character, hope”.


    Comment by Charlie — November 20, 2011 @ 1:23 PM

  110. hi everyone,

    im quite sad and angry, I thought I would see what im gratefull for:

    1. I have a home
    2. im musically talented and am gratefull that I have the money to take lessons as well as a great teacher
    3. im greatfull that I have finally found 3 different places that will let me volunteer, dispite me having seiz
    4. I had a great time dancing this past saterday, I may be able to go dancing with a different swing dance group this coming saterday
    5. i finally made new friends, that ask where I was, if I didnt show up for church, or volunteer.
    6. That is nice to know, im not just someone known as “someone that has epilepsy”
    7. im healthy
    8. the obsessed guy has stopped bothering me
    9. my next appointment with my epileptologist is in january
    10. i have set up my new beautifull white christmas tree
    11. my pets are healthy

    i’ll think of some more later, I need to take Quincey for a walk

    I dont want to forget all the other things im greatfull for


    Comment by jennifer — November 28, 2011 @ 9:59 PM

  111. Hats off to you Jennifer for turning lemons into lemonade!


    Comment by Phylis Feiner Johnson — November 29, 2011 @ 6:33 PM

  112. im greatfull that,

    1. i met other people from my church that also have epilepsy, a woman that used to have seiz., as well as her daughter, and grandson.
    2. the weather is nice today
    3. I have time to bathe my dog today, though I dont want to do it


    Comment by jennifer — December 9, 2011 @ 4:23 PM

  113. I am greatful for:

    1. My health is improving
    2. We are finally having rain, so no drought this year
    3. I have a great family
    4. I am trying to be on a gluten-free diet



    Comment by Ruth Brown — April 13, 2012 @ 9:17 PM

  114. Hi Ruth,

    you know, I keep forgetting to write of my gratitude. I should, I have been falling alot. Someone from where I volunteer at told me, that maybe I should get a walker. I told her, im too young for that. She says, that it would at lease keep you from falling so hard. I told her, ill think about it. I already have a helmet. would that not be enough to use?

    Im greatfull, 1. I had a good day
    2. I have wonderfull caring friends
    3. my Dr. appointment is coming up end of may
    4. I got to see my parents a few minutes
    5. I talk to my twin every night
    6 got my taxes done and got some back


    Comment by jennifer — April 14, 2012 @ 1:07 AM

    • I guess I should be glad that I only broke the “fat” part of my tibula which means I won’t have to have surgery on my foot with pins and plates.

      I’m also real grateful that my neuro (who’s a prince) fit me into his schedule for Thursday. I’ve been falling like crazy, hence the broken foot.

      Arthur has been wonderful. So has my friend Whitney who schlepped me to Urgent Care on Saturday and then her orthopedist on Monday.


      Comment by Phylis Feiner Johnson — April 18, 2012 @ 12:09 AM

  115. even though I have been falling many times a week, I can say that, I didnt get hurt this time when I fell this morning. I dont understand why I have been falling (atonic seiz) more. im greatfull that my next epileptologist appointment is 29 of may. I do hope that we can come up with some sort of next treatment. Im thinking anxiety meds maybe, or massage therapy.


    Comment by jennifer — May 12, 2012 @ 7:40 PM

  116. Jennifer, I don’t know about this, but recently, THREE doctors have suggested Meditation. (Even Arthur!) There are books, support groups, workshops, etc.

    One book is “Meditating for Dummies” (That’s me!)

    The one I just bought is called:

    “Wherever You Go, There You Are”



    Comment by Phylis Feiner Johnson — May 12, 2012 @ 7:50 PM

  117. Hi Y’all,
    I haven’t been listing my “thankful” stuff in awhile, but that don’t mean I dont have a boatload of things to be Thankful for.
    I’m thankful I live in a place that has the most modern medical treatments. so many people with Epilepsy and other ailments have no clue what is wrong with them and don’t even have meds to possibly help them. Eventhough my wife is battling cancer, we have hope it can be treated and stopped in it’s path. in other parts of the world they have no hope of cures
    I’m thankful for really good friends that are so thoughtful, caring, and understanding. That includes all of you in Phylis’ little family here.
    I’m thankful I have a roof above my head, clean water to drink, I’m able to work, and I can drive again.
    I’m thankful that my 50 years with epilepsy have given me insight and I’m able to help people in my support group.
    I’m really thankful for Phylis who has taken me from an ignorant person with Epilepsy and taught me soooo much. I’m sure she has touched more lives than she could ever imagine.
    I’m thankful to God, who has given me strength to walk thru some really deep and dark places during my life.


    Comment by Charlie — July 18, 2012 @ 9:57 AM

  118. Oh Charlie, I am ever so grateful for your kindness and caring. And all the love you share. You are truly an inspiration.

    And I am thankful for my Epilepsy Talk family — their sharing, widsom, generosity, candidness, and support.

    We are lucky to have each other. And I am especially lucky to know all of you!


    Comment by Phylis Feiner Johnson — July 18, 2012 @ 10:24 AM

  119. hi everyone,

    Im greatfull that I may have a chance of qualifying for a seiz service dog. I wont know till in the next 3 mo. I had my application looked at, and the initial meeting. Now I need to wait till I get the letter in the mail that I will say if im accepted for the dog or not. Pray that I do. Ill let everyone know as soon as I do.


    Comment by jennifer — July 18, 2012 @ 5:49 PM

    • Good luck, Jennifer.


      Comment by Charlie — July 18, 2012 @ 8:42 PM

    • How FABULOUS! You’d be great with a seizure dog. They should have been able to tell that in your interview along with your real need for one.


      Comment by Phylis Feiner Johnson — July 18, 2012 @ 9:16 PM

      • It was the feild director that i met with. She took all the info,then will send it to head of Pause-With-A-Cause. They will look through it, contact my contact people, Dr. etc…My feild director said that I would probably qualify. My feild director will be the one that will work with me, the dog, show me what to do, work with me during this whole process. She will forsee my case, so to speak. $ 30,000 needs to be raised before they will look for a sutable for me. if you are curious, you could look up the program that trains and provides service dogs. too much info for me to put here. I dont think I will have trouble to get one. It will take 3 or more yrs average to raise the money, give or take. I will write more later. Take care..



        Comment by jennifer — July 18, 2012 @ 10:14 PM

  120. Tonight was another meeting with my Epilepsy Support Group. Sharing concerns, trying to help others with problems.

    (Nobody knew that I almost died 3 years ago…so that was a real eye-opener about Wellbutrin!)


    Comment by Phylis Feiner Johnson — July 18, 2012 @ 9:19 PM

  121. Jennifer, does that mean you have to WAIT 3 or 4 years before you get the service dog???


    Comment by Phylis Feiner Johnson — July 19, 2012 @ 9:55 AM

    • first the money needs to be raised through donations.


      Comment by jennifer — July 19, 2012 @ 12:19 PM

  122. when I find out if I will receive one, will you (and everyone here on epilepsytalk) help raise money for my dog?

    They will also look for funding, as well. If everyone on epilepsy would have fundraising, and look for some sponcers, then maybe i’ll receive one earlier. First, i’ll have to find out if i’ll even get one.

    Did you their web site?

    Im not required to help raise the money, but it just makes this more meaning full.


    Comment by jennifer — July 19, 2012 @ 12:31 PM

  123. The dog is free of charge to me. I just want to make this go faster.


    Comment by jennifer — July 19, 2012 @ 12:32 PM

  124. I think you shuld have some fundraising event with your local epilepsy foundation to get more attention, publicity and donors.

    When you’re approved, call them and ask them and explain the situation.

    Here’s another resource. (For what it’s worth…)



    Comment by Phylis Feiner Johnson — July 19, 2012 @ 1:31 PM

  125. Hi everyone,

    im greatfull that the meeting went well with paws with a cause

    im anxious about if I will be approved

    would you think I would be?

    would you approve someone that has many seiz a day?


    Comment by jennifer — July 23, 2012 @ 12:20 PM

  126. I think you’ll be approved both for your kind personality AND because you have so many seizures a day. I mean that’s the point isn’t it…to help someone who really needs it!


    Comment by Phylis Feiner Johnson — July 23, 2012 @ 1:57 PM

    • does a seiz dog have public access?


      Comment by jennifer — July 23, 2012 @ 4:46 PM

      • Legally yes, unless someone is being truly stupid. Then I would suggest calling the authories.


        Comment by Phylis Feiner Johnson — July 23, 2012 @ 6:46 PM

  127. A lady that goes to my church, trains “service dogs”. She brings a dog to church every Sunday. The dogs don’t bother anyone and are well behaved. (better than some of the kids) haha. So take that dog wherever you want when you get it.


    Comment by Charlie — July 23, 2012 @ 9:15 PM

  128. my whole church already knows that I may get a service dog. I get asked by a few wemon if I already got one. I tell them, no not yet. It will be 2-3 yrs. or so.. I first need to find sponsers that will donate money for one. I dont think that it will take long, because when they find out my seiz occure everyday.


    Comment by jennifer — July 23, 2012 @ 9:53 PM

  129. I agree. Thought: Maybe you can get some funding from your chuch!


    Comment by Phylis Feiner Johnson — July 24, 2012 @ 10:20 AM

  130. Phylis,

    have you heard of the service dog group called Paws with A Cause? Maybe I should not be so hopefull that ill qualify for a service dog. Im stressing so much for and about it. I have told so many people about it. What am I going to tell them if I dont?


    Comment by jennifer — July 27, 2012 @ 8:41 PM

  131. Paws with a Cause http://www.pawswithacause.org/ is a very well-known and highly respected charitable organization.

    If you stress out about it THIS early, you’re never going to make it through the wiating period!!!


    Comment by Phylis Feiner Johnson — July 28, 2012 @ 10:37 AM

    • I will, it will be a whole lot easier.


      Comment by jennifer — July 28, 2012 @ 12:24 PM

  132. im greatfull that my epileptologist appointment went well. we discussed the bad reaction that I had 3 0r 4 mo. ago. We uped the dose on lyrica, which cut my seiz number to a little more than 1 1/2 the usual typical seiz number.

    I had told her that I had applied for a seiz dog. She said great. I also asked her if she has any patients with a seiz dog. She does, but from a different training program.I dont quite know the name of it.

    My Dr. has a few patients that have seiz dogs. She will get me an application.and mail it to me. She will try her best to see that I get a seiz dog. She told me that it could take a yr before I find out if I qualify, with either training program I told her, Ill just have to be patiant.

    I was stressing a while back about the waiting, but now after having prayed to God for the peace and knowing what he has for me will be. Whether it will be, or not be.

    I beleive he gave me that peace last week. Im greatfull, because the stress was too much for me before I had prayed.


    Comment by jennifer — July 31, 2012 @ 6:51 PM

  133. Great news about the Lyrica!

    Here are two more Seizure Dog sites:

    Canine Assistants

    Canine Partners for Life http://www.k94life.org/html/seizure_alert.htm


    Comment by Phylis Feiner Johnson — August 1, 2012 @ 9:26 AM

  134. Sometimes we forget to express our gratitude, you’re exactly right, Ruth.

    I’m grateful that:

    We weathered Sandy much better than others…

    I still have 5 fingers — even if it took 5 days of antibiotics in the hospital…

    That we are a free democracy and I had the opportunity to vote today.


    Comment by Phylis Feiner Johnson — November 6, 2012 @ 12:20 PM

  135. im greatfull that my Dr supports my decision to apply for a service dog.


    Comment by jennifer — November 7, 2012 @ 11:05 AM

  136. im greatfull my building is is in the process of being fixed, after 3 + yrs with me trying to get the condo assoc. to do it.

    im greatfull that i have a supporting church family as well as my own family.


    Comment by jennifer — November 17, 2012 @ 5:55 PM

  137. You are one persistant lady. Good for you Jennifer!


    Comment by Phylis Feiner Johnson — November 17, 2012 @ 5:57 PM

    • I agree with Phylis. You sure have hung in there thru a lot. Keep it up! Any luck with the seizure dog?


      Comment by Charlie — November 17, 2012 @ 9:19 PM

  138. no, not yet. I hope quincey and the seizure dog will get along.


    Comment by jennifer — November 18, 2012 @ 4:22 PM

  139. The Public Library has been putting up with my Grand & Petite Mal seizures for many years NOW.

    And, in every Epileptic incident, the Public Library has been very understanding, caring, helpful & first line of rescue to my welbing & uninterrupted access to all other library useres & patrons, while still dealing with my seizures.



    Comment by Gerrie — April 17, 2013 @ 6:30 PM

  140. Well, it’s nice to know that there’s living proof of people who are caring and understanding!


    Comment by Phylis Feiner Johnson — April 18, 2013 @ 12:20 PM

    • Yes Phillys,,,
      When the sky seems falling on top of me & I knew nothing how to cope with Epilpsy,,, It feels great to know, “there’s living proof of people who are caring and understanding!”.

      Yes Phillys,,,
      Thank you for your selfless devotution, time & hard workd in providing this treasue, inforative, educational VALUABLE SITE, many of us have learned how to COPE with our Epilpsy, we knew nothng about before.

      Yes Phillys,,, It’s grea to know, there is a way to cope & it’s greater to know there are people willing to help you cope.

      Yes Phillys,,,
      Thanks for ALL the blessings, I NEVER knew I was going to able to make it this far, but I did.

      GRATIFYING TO KNOW,,, Good can come out of this ordeal.


      Comment by Gerrie — April 18, 2013 @ 6:13 PM

  141. Join the club.

    I was supposed to be dead by 50, but I’m turning 60 in June.

    I’d love to go thumb my nose at all those docs, but THEY’RE probably dead!!! 🙂


    Comment by Phylis Feiner Johnson — April 18, 2013 @ 6:37 PM

    • Fascinating to know, we are far more stronger than our ordeals & Docs.



      Comment by Gerrie — April 18, 2013 @ 7:29 PM

  142. YEE HAA! Let them all eat cake. (If they’re alive.)


    Comment by Phylis Feiner Johnson — April 18, 2013 @ 7:32 PM

  143. I guess we’re not ready for Gratitude is the Attitude part 6 yet. ha! So, lets burn Gratitude is the Attitude 5 to the ground !
    I have often thought of paying the co-pay and finding the pill-pusher’s that are still alive and ask them “Why didn’t you tell me there was an alternative to a lifetime of taking handful’s of pills.” My previous Dr told me getting a VNS was “a no brainer”. I probably would have done it if the VNS company didn’t creep me out, by constantly calling and asking [when are you going to schedule the surgery].
    1) Thankfully I went to a Comprehensive Epilepsy Center at NYU.
    2) Thankfully the Dr looked at me as a ‘new’ patient without wanting any of my old records.
    3) Im Thankful I was a candidate for surgery.
    4) Thankfully I had one of the best surgeons in the business do my surgey.
    5) Thankfully, I have a good wife who stood beside me and made sure I was being well taken care of the two weeks in the hospital and the 6 months on the couch.
    6) I’m thankful to have been welcomed into Phylis’s little family here in 2010
    7) Most importantly I’m thankful to my Lord and Savior for giving me the ‘peace’ and strength I needed through 50 years of seizures.
    Bless you all!


    Comment by charlie — April 18, 2013 @ 9:21 PM

    • Charlie — I’m thankful that you’re here to share so much positive energy and wisdom with us.

      Knowing about your previous VNS debacle, makes me even more grateful that you were wise enough to see through their aggression and true motive.

      It is OUR blessing that you found Dr. Pacia at NYU and now have been seizure-free for almost 4 years.

      Toni is a God Send herself. A most amazing lady. And I’m so happy you found each other.

      Now I pray for HER health.


      Comment by Phylis Feiner Johnson — April 19, 2013 @ 10:49 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

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