Epilepsy Talk

Talk About It! | June 23, 2011

Here’s a place to express yourself, your point of view or whatever comes to mind. It doesn’t have to be just about you…it can be news, events, information…whatever you want to share.


  1. Wow, I’m the first…. Here we go.
    I live in a rural area with a lot of wildlife, including rattle snakes. We killed 7 last year and 1 this summer. We lost one of our dogs to a snake bite last spring. We now have a jack russell and a husky who LOVES to run!!! I grew up around snakes so my mother DRILLED into our heads the danger of rattle snakes so now I’m scared to death of them.

    I do wander at times during a complex partial seizure. My fear is that I will open the front door, the dogs will get out, get bit or that I will get bit. I find bumps and bruises like I’ve run into things but as far as I know I’ve never opened any doors.

    My question is . . has anyone ever opened doors while wandering?


    Comment by Cari — June 23, 2011 @ 6:53 PM

    • Welcome Cari
      To answer your question about opening doors.
      No, I usually walk right into em.lol

      To be honest, I don’t know what I do. I usually have siezure while I’m sleeping. I can only tell I had one by waking up and not recognizing where I am. I’ve gotten lost in my own living room because I either couldn;t find the door or didn’t recognize the bedrrom.


      Comment by mkfarnam — June 23, 2011 @ 8:11 PM

    • Opened & Closed them. 🙂 Even tried to open the Passenger Car door while GF was doing 75mph down the Freeway. She was Very Happy that a Convulsion took over B4 I could open the door.

      I think the idea of a Lock is a Good one. 🙂 A friend of mine suggested using 2 doors for the bathroom or bedrooms. But, a sliding/folding, door replacement is an even Better idea. To prevent being ‘trapped’ in a room.

      Love Candi


      Comment by candi — June 28, 2011 @ 4:53 PM

  2. Hi Cari,

    As far as I know, I have not opened doors during a seizure. I might have and come back. I really do not know. I wind up with bruises that I do not know where I got them from.


    Comment by ruth brown — June 23, 2011 @ 7:31 PM

    • I had a bruise the size of a fist on my left hip bone last week. I have tried to measure it up with furniture, doorknobs, everything in the house. It doesn’t match. I have no idea how I got it.


      Comment by cmaclean44 — June 23, 2011 @ 8:01 PM

  3. I walk into walls and glass doors.

    In fact, our new Amtrak station has just been remodelled. One day when I was late for the train, I was rushing to get my ticket and didn’t know that the outside waiting area entrance was all glass. So I bounced into one then bounced back and bounced into the second one and bounced back, only to bounce into the third one. 😦

    I was lucky I didn’t break my nose. And I DID make the train, then had a seizure in the aisle.


    Comment by Phylis Feiner Johnson — June 23, 2011 @ 8:12 PM

  4. In the 90’s I had to have surgery on my shoulder because I had a crushed “Collar Bone”‘.
    Even today, I have no idea how it happened.


    Comment by mkfarnam — June 23, 2011 @ 8:17 PM

  5. Ah, the mysteries of epilepsy!


    Comment by Phylis Feiner Johnson — June 23, 2011 @ 8:29 PM

  6. Mike, it sounds like you had a seizure on cement to have to have had surgery. Are you still having pain? When did it happen?

    I know where Redondo Beach is but sad to say, hubby has never taken me there. It is beautiful. I have lived all of my life in CA. and have not seen all of it.


    Comment by ruth brown — June 23, 2011 @ 11:32 PM

    • To answer your first question.
      I’ve learned to tolerate most pain. I was walking around for about 4 months ignoring the pain waiting for it to go away.
      But the pain got so sharp that I had to have it checked out.
      That’s when they found it was a crushed collar bone. After cleaning out the bone fragment the pain was gone and I was back to normal.


      Comment by mkfarnam — June 28, 2011 @ 5:10 PM

  7. Someone actually asking me to say something,well that’s a change.
    Answer the question first YES I have opened the front and back doors and gone outside .
    Probably in the partial sz. stage before I had a T.C. sz. though. I am also a confirmed sleep walker that does not involve the sz. activity though.
    It is more of a dream like state and although I have not done anything real crazy or dangerous “yet” I fully understand how easy it would be.
    I have met people recently who grew up in homes with their parent having szs. and they both tell stories of how their dads wandered the neighborhood in a “blackout” before having T.C.’S.
    The other unknown owies I understand too. I feel lucky I have not been injured worse over the yrs.
    Most of the injuries I have received though I have no recall of how they happened.
    I have broken both my feet during T.C.’s and have no idea how,the hardest I have EVER been hit was by myself during sz.
    It took weeks to figure out how it occurred. I punched myself in the left cheek,cutting my mouth clear through leaving a 2 in. open gash ,just from my knuckles.
    I under stand a lot more now and the damage from all those concussions is defiantly a factor in my memory loss and personality changes over the past few yrs.Very similar to the effects from sports and the research on trauma in soldiers.
    There are many kinds of locks that could prevent a person from leaving if they were wandering though ,just a simple pin lock on the top of the door would be enough for a person that was half asleep or in a partial sz.,or just maybe to high for them and out of reach.
    Be careful please . Thanks Rick Wichita Kansas


    Comment by Rick — June 24, 2011 @ 2:11 AM

  8. Hi Rick,

    We haven’t heard from you in a long time!

    Two mysteriously broken feet? Ouch! AND a self-made punching bag? That must be awful.

    How have you changed and how has your personality changed from these injuries?

    And YOU take care, please!


    Comment by Phylis Feiner Johnson — June 24, 2011 @ 11:35 AM

  9. Thanks to all for the info !! While I’m pretty sure my bumps and bruises come from running into things I will probably never know for sure.

    Thanks Rick. I like the lock idea. It’s not the outdoors I’m afraid of, it’s the snakes and the stairs off the deck!!


    Comment by cmaclean44 — June 24, 2011 @ 7:39 PM

    • By the way Mike and Ruth, I too am from CA. Born and raised outside LA now outside San Diego. And I know Redondo well


      Comment by cmaclean44 — June 24, 2011 @ 7:42 PM

      • Hi CC.
        I’m not originally from California or Oklahoma.
        I was born and raised on a Dairy farm in NW Michigan.
        At 17 I jumped a freight train and went to San Diego(actually it was Escondido)
        I lived in SoCal from about 1973-4 to 2007.


        Comment by mkfarnam — June 25, 2011 @ 7:34 PM

  10. Hi, I am glad to meet you. I live in a small town outside of Bakersfield. I live in the southern part of the Central Valley. I was born in San Fransico. My mother wanted to live in SF and my father wanted to live in Merced. We moved every 3 years from one city to the the CV. I have lived in CA all of my life.


    Comment by ruth brown — June 25, 2011 @ 2:32 AM

    • Ruth,
      I lived in the foothills of the San Bernadino Mnts
      (below Cajon Pass, Lake Arrowhead, Big Bear and Crestline) for 25yr’s aka (San Jacinto, San Gogornio)


      Comment by mkfarnam — June 25, 2011 @ 7:42 PM

  11. Ha, remember, I was about 16-17(young&stupid) then, I jumped it in St Louis, Mo. It took over a week. Talking about adventure……There’s along story to that ride….The brakesman found me in an empty boxcar up in the Rocky Mnts. in Colorado. (it was winter and I hardly had any close on) LOL!


    Comment by mkfarnam — June 25, 2011 @ 8:47 PM

  12. Where do you live NOW, Mike?


    Comment by Phylis Feiner Johnson — June 25, 2011 @ 10:32 PM

    • Duncan, Oklahoma, (Ron Howards hometown)
      (Opy Taylor on The Andy Griffith show)


      Comment by mkfarnam — June 25, 2011 @ 10:38 PM

  13. Talking about open doors and assorted mysteries. My friends and family used to lock the doors of their cars when I rode with them. One of my instincts during an aura was ‘flight’ to get somewhere safe to have my seizure. I was known to try to get out of moving vehicles. I succeeded in opening the door a few times, but the driver would pull over and pull me back in. I also cant tell you how many times I’d find myself somewhere wondering how I got there.


    Comment by Charlie — June 26, 2011 @ 2:00 AM

    • I always wonde was I am the morning or waking up after a seizure.

      I have had seizures while I was awake. Usually from missing more than 1 dose in a row.

      Can anyone relate to this?

      I can tell when I’m going to have a seizure by a certain or sudden tingeling sensation in my stomach, but by then it’s too late to do anything. That feeling is like the start button.


      Comment by mkfarnam — June 26, 2011 @ 5:40 AM

  14. Correction:
    I always wonder where I am.


    Comment by mkfarnam — June 26, 2011 @ 5:42 AM

  15. NOW or then?


    Comment by Phylis Feiner Johnson — June 26, 2011 @ 3:26 PM

  16. That was a correction my post before that that starts like this:

    I always wonde was I am the morning


    Comment by mkfarnam — June 27, 2011 @ 2:18 AM

  17. Gotcha. Thanks.


    Comment by Phylis Feiner Johnson — June 27, 2011 @ 11:10 AM

  18. Charlie, you were able to unlock the car door. In our car, all of the doors are locked. Only the driver can unlock them.

    Can the car you are in be equipped like that? That would be a protection for you.


    Comment by ruth brown — June 27, 2011 @ 8:54 PM

    • Yes Ruth, during my aura’s I was ‘with it’ enough to to try to flee where I was, and ‘out of it’ enough to not know what I was trying to do. Most of the vehicle’s I rode in, the driver had to push the lock button down on his side. The kiddie locks were usually for the backseat.
      I may not be exact in my car feature’s, but I sure in heck would try to get out of them on the highway.
      During one particular seizure, my friends put me in the middle of the pick-up so I wouldn’t try to escape. The problem was that I had a seizure enroute, my left leg stiffened and I pushed the driver’s foot to the floor. Thank the Lord he had the wherewithall to get the truck stopped. Someone please tell me I wasn’t the only one to do stuff like that.


      Comment by Charlie — June 28, 2011 @ 2:28 AM

      • Charlie the runaway!

        My car now has auto locks for the front AND back, so you’re welcome to drive with me anytime. Even though I know you don’t need them anymore!


        Comment by Phylis Feiner Johnson — June 28, 2011 @ 12:23 PM

      • Charlie, You ain’t alone. 🙂 GF was doing 75mph down the freeway. She realized I had a problem when I told her it was my turn to dance & I was trying to get out of the car. She was torn between reaching over me to lock the door, Snap me into my seatbelt, quickly or just pull over. She Thanks the Lord that I slipped into convulsions B4 she could do anything. HUGS!

        Love Candi


        Comment by candi — June 28, 2011 @ 5:09 PM

  19. Charlie, I am thankful that you are safe and sound with us.

    I live in CA and everyone calls them “protection locks.” They are for everyone. Even the driver’s side of the car is “locked.” All of the car doors lock with his remote. Only he, my husband, can use the remote to unlock them when we are parked. He will not unlock them while driving. I am not always told what I do when I have a seizure. Hubby and my son do not tell me. I really do not want to know.

    I should probably be told in case I have a problem like yours. Your brain wants to escape from the seizure.


    Comment by ruth brown — June 28, 2011 @ 7:59 AM

  20. Ruth, knowing what you do during a seizure won’t make you change how you do it.
    It would only make me more embarressed and reluctant to be in the public eye.



    Comment by mkfarnam — June 28, 2011 @ 3:45 PM

  21. Mike, you are so right!!


    Comment by ruth brown — June 28, 2011 @ 7:37 PM

  22. Candi, I do not know about the laws in your state. In CA, it is against the law to drive without the seatbelts on. We get a ticket if we do not have our seatbelts on.


    Comment by ruth brown — June 28, 2011 @ 7:44 PM

    • The seat belt law is mandatory in every state……..
      In fact, I just got a ticket last night for not wearing mine.


      Comment by mkfarnam — June 28, 2011 @ 7:56 PM

  23. The only ones that are exempt from wearing a seat belt are the Amish. LOL!


    Comment by mkfarnam — June 28, 2011 @ 8:00 PM

  24. Mike, are you Amish? If not, then you need to wear your seat belt just so you do not get a ticket.


    Comment by ruth brown — June 28, 2011 @ 8:07 PM

    • Please, not another lecture.lol

      Am I Amish? that’s funny.lol
      I was on my way to help at the church when I got it.
      The reason I didn’t have it on is because the buckle was jammed.


      Comment by mkfarnam — June 28, 2011 @ 8:21 PM

  25. Phylis, what happened with the “favorite joke” thread?


    Comment by mkfarnam — June 28, 2011 @ 9:19 PM

    • I should ask YOU that Mike. You were the one who had me in stitches every morning. I must have told everyone I know about this hysterically funny guy on my website! 🙂

      BTW, see “Gratitude is the Attitude” today…”


      Comment by Phylis Feiner Johnson — June 28, 2011 @ 11:58 PM

      • What I meant was, the link to the thread is no longer in the list, and when I tried to open a link to that thread from my inbox, it went to this site, but said that page couldn’t be found..


        Comment by mkfarnam — June 29, 2011 @ 3:25 PM

  26. I was just having a conversation last night with my son-in-law because my 9 year-old granddaughter had done a bit of sleepwalking the night before, wound up in bed with her brother, and woke up not knowing how she got there. This isn’t at all related to E, but I questioned him about the dangers of possibly falling down the stairs. He said that people who sleepwalk (different, I’m sure, than the topic of this thread) are usually conscious enough to negotiate stairs, and that sometimes people even use a knife to, say, cut a sandwich they’re making in half, or even DRIVE. I find that incredible.


    Comment by Maggie — June 28, 2011 @ 9:51 PM

  27. Phylis and Maggie, do you or would you write a books?


    Comment by mkfarnam — June 28, 2011 @ 10:22 PM

  28. Mike, I’m sorry to say, I don’t have a short story, no less, a novel in me. I have the attention span of a bunny. (Maybe that’s why I ended up in advertising!)

    Maggie, on the other hand, is an accomplished poet and has a book out now called “Broken Consciousness.” If you go to this Amazon link, you can even read my review:


    It’s available online at Amazon.com, Borders and Barnes & Noble. And you would love it…it’s SOOOOO wonderful. Very pithy and to the point.

    Would you like me to buy you a copy as a treat? Because YOU of all people would LOVE it.

    If so, just email me at pfj@pfjohnson.com


    Comment by Phylis Feiner Johnson — June 29, 2011 @ 12:08 AM

    • I was referring to my childhood in a State Hospital (what went on behind closed doors).
      There’s already a 54 page blog about it(online)
      called “Forgotten Children”.
      We had a writter, but she passed away in 2008.
      Her name was Heidi “Johnson”.


      Comment by mkfarnam — June 29, 2011 @ 3:06 PM

      • Oh how sad.

        Well, to lift your spirits, “Laughter is the best medicine” probably went off the list because it wasn’t in use enough. And the search engine is difficult.

        But, if you go there now, you’ll see I joke from ME! (I stole it from an email I received!)


        Comment by Phylis Feiner Johnson — June 29, 2011 @ 9:35 PM

  29. Hi
    So sorry lost track of this.
    Maggie ,Yes true sleepwalking all manner of things are possible. As a kid I would wake up,get dressed and go wait on the porch for the bus lol but it was night time lol ,also eat,go in the back yard,I laid in bed with my eyes open and had conversations with people was and still is a common one.
    I was hospitalized for this a few yrs. ago because I lived in a big house alone most of the time and was walking around “doing” things. I left the front door open in the winter? I was smoking cigarettes,eating,my fear was I also cook a lot and I would just start cooking a meal as usual and burn up or get hurt.
    What convinced me I was not just having effects from szs was I called a friend and he said the next day about all this stuff and I had NO idea what he was talking about .
    Wild stuff,fortunately In the beginning of the sleep study I had a sz while the top neuro was there AND his hobbie ,as he puts it is studying weird sleep habits . a few days later he was also there when I was laying in bed wide “awake” lol and I was watching t.v. talking and eating all on camera and I was connected to an eeg that showed no activity ,this fascinated them so they paid more attention I guess lol
    I still “feel” this had direct relation to concussions during that period though ? Be careful please. Rick .


    Comment by wichitarick — June 29, 2011 @ 12:37 AM

  30. Mike, it sounds like you do have a book already written, “Forgotten Children.” I know I would like to read it.


    Comment by ruth brown — June 29, 2011 @ 6:23 PM

    • So No one think that I’m comletely of the issue of “Epilepsy”, This is where most of us diagnosed with epiiepsy were sent back then because the lack knowlege. It was treat like leprosy there.
      I thought I posted a link to this when I first joined here.

      Anyway, The site is “locked” but you can still access and read it.

      NOTE: RonL is another patient that was there(Hall-18) at the same time I was.



      Comment by mkfarnam — June 29, 2011 @ 6:54 PM

      • A friend of mine was in a local psych unit that was in shut down. (They were locked in cages.) He said he was reluctant to make friends, because every time he made a friend, they killed themselves.


        Comment by Phylis Feiner Johnson — June 29, 2011 @ 9:42 PM

  31. Mike, that is very moving. How long were you there? A lot of children with epilepsy were sent to those awful hospitals.

    I would have been sent to one if my father did not have epilepsy. He protected me.

    Joe Kennedy on the other had a daughter that he sent to a place like you were in.

    There are so many “Forgotten Children.” I know it must hurt to talk about it.



    Comment by ruth brown — June 29, 2011 @ 7:59 PM

    • You’ve all of that already?
      I was there 4-5 yr’s. (the dates I put in there may not be exact)
      I never had many priveges because I was always running away….(that’s in the blog)
      Please no sympathy,
      It’s history. As I got older I realized that most every aspect of life was different back then. So I don’t let it bother me one way or another.
      Heidi Johnson got a hold of me and told that Ron was starting this blog and ask if I’d help out with some of my memories.
      I’m what I might call a history buff. I’m interested in the old hospital it’s self.
      It was built in 1865. and was self sufficient.
      There’s pictures all through the blog.

      Hall-18 is on facebook too.


      Comment by mkfarnam — June 29, 2011 @ 9:15 PM

      • We had caged in porches


        Comment by mkfarnam — June 29, 2011 @ 10:00 PM

  32. Did you know that the Kirkbride forum announced POSTCARDS for sale? (I’m sure you’ll want to run out and collect them.)


    On June 16th, 2011 Columbia State Hospital Sale was OK’ed…to a developer. (Wouldn’t it make a nice retirement “home?”)


    And you may find this MySpace thread interesting.


    I also find the the description of their gestault as Moral Treatment just lovely. (UGH.)

    I’m so glad we’re “enlightened” today. (?????)


    Comment by Phylis Feiner Johnson — June 29, 2011 @ 10:33 PM

    • As we speak, the hospital that I was in is being renovated into restraunts and and other businesses in agreement to keep the structure in tact.
      There are many interesting things to find on the
      Kirkbride website.
      They call it Kirkbride because Kirkbride in who build those asylums.
      You can find every asylum they built back to the eary 1800’s and the history of them.
      The former name of the state hospital I was in is.
      “Michigan State Asylum”



      Comment by mkfarnam — June 29, 2011 @ 11:30 PM

      • Traverse City, Michigan.


        Comment by mkfarnam — June 29, 2011 @ 11:32 PM

      • I went through a lot of entries on Google and learned plenty. As for the photobucket link, it’s no longer active… 😦


        Comment by Phylis Feiner Johnson — June 30, 2011 @ 1:49 PM

      • Yup, I read all about them on Google.


        Comment by Phylis Feiner Johnson — June 30, 2011 @ 7:04 PM

  33. Since it is that old, they should tear down the whole place and burn it down. Mike is was a concentration camp for you, wasn’t it?

    I am wondering why the concentration camps in the US have not been burned down. Yes, the Japanese were put in concentration camps during WW2. They still exist, why?

    Why do the concentration camps that the Jewish and the Jehovah’s Witnesses put in, not destroyed? These places still exist. Why? I hope I am not upsetting anybody. I am glad that we can talk about this as a family.


    Comment by ruth brown — June 30, 2011 @ 1:40 PM

    • I think the concentration camps and the “detaining camps — for the Japanese” — are meant to teach us a lesson…and remind us of some very UGLY history that WE were a part of…not just the Germans.

      What do you think?


      Comment by Phylis Feiner Johnson — June 30, 2011 @ 1:53 PM

      • Here’s a video taken last year by a resident of Traverse City.
        The second link is the main page for Traverse City state hospital with photos and more links and videos to other Kirkbride Asylums.
        When you see a picture showing painting on the wall of the 7 dwarf and an owl in the tree, that’s the day room on the floor were I was,(Hall#18–Bldg #50)


        main page


        Comment by mkfarnam — June 30, 2011 @ 3:51 PM

      • My father, who knew a great many politicians, told me the reason. They are being saved in the US and Germany, in case they might have to use them again. The government of the US tries to keep it a secret that they exist.

        My father knew about them because a great many friends of his were sent to them.


        Comment by ruth brown — June 30, 2011 @ 5:27 PM

      • Phylis, I think it is because they might plan on using them in the future. ‘why would we want to see the UGLY history? Children are told all about it in school.


        Comment by ruth brown — July 10, 2011 @ 12:07 AM

  34. If the video(abow) doesn’t show, It can be found on the main page.

    Here’s an “Audio” from a local radio station with comments from patients and emloyees of the hospital after it closed down.



    Comment by mkfarnam — June 30, 2011 @ 4:11 PM

    • “DAY ROOM?” How about JAIL CELL?

      The video was terrific, but it made me cry. Especially to imagine YOU there.


      Comment by Phylis Feiner Johnson — June 30, 2011 @ 4:22 PM

      • That was a modernized(rated PG) video in comparison to the real thing and other video’s and pictures that can be found on the kirkbride site and on our blog.

        I was shot full of drugs mainly “Haldol “http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000604/ and then thrown in suclusion when ever I had a seizure. That was their remody.
        I’m sending a comment to the radio station in Traverse City.


        Comment by mkfarnam — June 30, 2011 @ 4:48 PM

  35. Mike thank you for sharing this with us. I watched both the video and listened to the audio.

    Phylis is right, in the video, it is a jail cell.

    I am glad that you are out and with us.


    Comment by ruth brown — June 30, 2011 @ 5:31 PM

  36. I just joined Facebook, Mike are you on Facebook, too?
    Phylis, is epilepsytalk on Facebook?


    Comment by ruth brown — July 2, 2011 @ 7:18 PM

  37. There’s a list of Ruth Browns on FB

    Is this one you?



    Comment by mkfarnam — July 2, 2011 @ 7:46 PM

  38. Candi and Tiffany are also on Facebook…I don’t remember who else.

    And Epilepsy Talk is there, but I hardly ever go there, it’s a waste of time. In fact, I hardly ever go to Facebook anymore.



    Comment by Phylis Feiner Johnson — July 2, 2011 @ 9:34 PM

  39. In my photos on FB there’s a few pictures of me


    Comment by mkfarnam — July 2, 2011 @ 10:26 PM

  40. The links beside the pictures of the day room and the moose you posted on your FB page, has links to my photobucket page.


    Comment by mkfarnam — July 3, 2011 @ 6:05 AM

  41. I already went there. My comments should be either in your photo album or on Facebook….


    Comment by Phylis Feiner Johnson — July 3, 2011 @ 12:26 PM

  42. Like

    Comment by mkfarnam — July 3, 2011 @ 1:39 PM

    • I’ve been there. That’s where I saw the picture of you and Sandy. What do you look like now???


      Comment by Phylis Feiner Johnson — July 3, 2011 @ 2:50 PM

    • You were a cutie. I saw that picture several times in your album.

      I was fat and ugly. With buck teeth. And every day, without fail, my mother would tell me how fat and ugly I was. I guess she got her kicks that way.


      Comment by Phylis Feiner Johnson — July 3, 2011 @ 6:51 PM

  43. Like

    Comment by mkfarnam — July 3, 2011 @ 3:20 PM

  44. Can you see anything in my last post?


    Comment by mkfarnam — July 3, 2011 @ 6:30 PM

  45. If not tnen:


    Comment by mkfarnam — July 3, 2011 @ 6:32 PM

    • That was the album picture I guessed was you. The other ones were too young!!! 😉

      But wait a minute…that was in 1988! 13 years ago. No fair.

      If my guess is correct from something in your album, you were born a year after me…1954?


      Comment by Phylis Feiner Johnson — July 3, 2011 @ 6:54 PM

  46. Those were educated guesses. They’re both right.
    The latest picture I have of myself is on my DL take 4 yr’s ago.


    Comment by mkfarnam — July 3, 2011 @ 7:35 PM

  47. I don’t like to have my picture taken…..unless I’m winning a 5 million dollar lottery.lol


    Comment by mkfarnam — July 3, 2011 @ 7:38 PM

  48. Can I whine for a minute?

    I’m going to this surprise party tonight where all this wonderful food will be served and I can’t have a bite because anything could have beef, lamb or pork in the stock, mixture or preparation. (The results would not be pretty.)

    On the other hand, at this year’s epilepsy gala (the theme is always New Orleans — Fat Tuesday), Allie had this beautiful meal made for me of vegetarian lasagne. Plantain “noodles”, stuffed with tomatoes and queso cheese. The problem was, I was so busy seizing, I couldn’t get a bite to my mouth. 😦

    And that was BEFORE Arthur and I were honored. When I stood up, I looked like I was doing a solo disco dance!


    Comment by Phylis Feiner Johnson — July 9, 2011 @ 8:50 PM

    • Are you a vegetarian because your against killing animals for food or are you diebetic or what?


      Comment by mkfarnam — July 9, 2011 @ 8:57 PM

      • I’m violently allergic to beef, lamb, veal (all mammals on 4 legs.) I almost died in 1977. Lost 55 pounds in 6 weeks. They had the mirrors in my hospital room covered, so I couldn’t see myself. (Tough to put in your contact lenses, so I gave up.)

        I needed a wheel chair just to get to the bathroom and had to be carried around because I was too weak to walk.

        The good news is that I can eat Emu, Ostrich, Frog’s Legs and Snake. And no, there is NOTHING idealistic about me! 😉


        Comment by Phylis Feiner Johnson — July 11, 2011 @ 3:02 PM

  49. Hi Mike, I am the Ruth Brown on FB that has the pretty pink flowers for my picture. I think I went to your FB site. I will have to check to make sure that we are friends.

    Phylis, that must have been something. Mike, Phylis has to be careful what meats she eats because she is Jewish. It is always safe to eat a salad at a get together. I know it is hard to not eat the yummies.

    I am having a problem on FB. It will not let me comment. The sign keeps coming on to edit settings. Which one lets me comment under someone’ else comment?


    Comment by ruth brown — July 10, 2011 @ 12:02 AM

  50. Jewis huh? Ok, that explains it. But I don’t understand where the temptation would come from.

    Yes Ruth, I know who you are.LOL!
    I sent you a request for friend. But with no response yet.
    Make sure that your logged in and your account is set to accept friend. Go through your “account settings” and see what’s checked.


    Comment by mkfarnam — July 10, 2011 @ 5:05 AM

    • No guys, it has nothing to do with being Jewish. It’s those nasty food allergies. And believe me, I’m soooo sick of salad, I could barf.

      I did end up eating cheese and fruit at the party + many chocolate cookies!

      The way to my heart is really through ice cream, although Ruth says it’s not good for me with colitis. 😦


      Comment by Phylis Feiner Johnson — July 11, 2011 @ 3:06 PM

      • Ice cream can cause inflammation?
        I’m no Dr.
        But most swelling is lowered by ice or something cold.

        I remember as a kid when I had tonsillitis, I had to eat ice cream to bring the swelling down.

        Heat makes things expand, cold does the opposite.

        Any way, I hope that you still enjoyed youself.


        Comment by mkfarnam — July 11, 2011 @ 4:14 PM

  51. Hi Mike, are you sure that you do not have me as a friend? I have you down as a friend.I have been to your site about the photobucket.

    If you do not have me down as a friend, give me another friend request. I had already accepted it. I am having problems getting my email. One of my friends sent me a an email. It took 2 days for me to get it.

    Friends here and on FB.



    Comment by ruth brown — July 10, 2011 @ 6:07 AM

    • Well if you have me, then I have you as a friend,
      It takes a request from one and comfimation from the other.

      Email notice from FB?


      Comment by mkfarnam — July 10, 2011 @ 7:48 AM

  52. For Mike:


    Delivery to the following recipient failed permanently:


    Technical details of permanent failure:
    Google tried to deliver your message, but it was rejected by the recipient domain. We recommend contacting the other email provider for further information about the cause of this error. The error that the other server returned was: 550 550-5.1.1 The email account that you tried to reach does not exist. Please try
    550-5.1.1 double-checking the recipient’s email address for typos or
    550-5.1.1 unnecessary spaces. Learn more at
    550 5.1.1 http://mail.google.com/support/bin/answer.py?answer=6596 t12si15491646qcs.46 (state 14).

    Am I in your address book? Am I “junk mail”? I don’t get it. 😦


    Comment by Phylis Feiner Johnson — July 11, 2011 @ 4:35 PM

  53. I see your problem. lol!

    Change the “u” in mkfarnum, to an “a” . it’s “Farnam” not “farnum”

    Every body does that. lol!

    It’s best just to copy and paste.


    Comment by mkfarnam — July 11, 2011 @ 4:44 PM

  54. Phylis, you are not dumb. It is the internet that is changing. I had to put in Adobe Reader 10 or hubby could have put in Adobe Flash Player. Adobe Reader 10 damaged my email address and so did Face Book.I am no longer on Face Book. Spyware got in and almost wrecked my computer.

    I also had to add Google Chrome. Internet Explorer is now a dinasor. Now, I have to get all of my favorites back again. I have to subscribe to all of my favorites on Epilepsy Talk again. Is Word Press dumb? I cannot put in a change of address without being a new poster.

    I just have to vent. I am frustrated.


    Comment by Ruth Brown — July 13, 2011 @ 4:47 PM

  55. Well, they have no way of recognizing you as a subscriber. To retrieve your threads, I THINK (but I’m not sure) you can go to “my subscriptions” and check off the threads you subscribed to.

    The only other thing I can think of is to forward you each post notification I get. Would you like me to do that?


    Comment by Phylis Feiner Johnson — July 13, 2011 @ 7:12 PM

  56. How DUMB am I?

    Phylis, you are not dumb.

    Hold on there Ruth.
    You need to think this over again.

    Phylis is the one that mispelled my email adress, not the computer.

    I’m still trying to decide whether or not to agree with her.LOL!

    LOL! [img]http://bestsmileys.com/thinking/2.gif[/img]


    Comment by mkfarnam — July 14, 2011 @ 2:00 AM

  57. Phylis, I agree with Mike, you are not dumb by a long shot. I cannot even post at CWE. Even though I changed my email address. I managed to get a VM in to Bernard. Like you, they are trying to help me. So far, with no success either.

    Mike I have had to leave Face Book permanetly. Someone sent me a spyware that almost wrecked my computer. It has messed up my computer really bad.

    Mike you can email me at brown.ruth69@yahoo.com

    Phylis, would you please send me notifications at my email address. See, even my email address did not show up blue.Now, in your new post, that one is pending.


    Comment by ruth brown — July 14, 2011 @ 3:27 AM

  58. See, even my email address did not show up blue.Now, in your new post, that one is pending.

    Yes it did…youe email adress is active.


    Comment by mkfarnam — July 14, 2011 @ 6:31 AM

  59. I really appreciate your help both Phylis and Mike. I forgot to add that everyone in our family can have my email address. I signed up for Talk About It and I hope it will be approved.

    I will keep everyone updated about my health. Mike, my memory is getting worse. I am going to ask for some tests. I have a new primary doctor and he seems to be a much better doctor. I will tell my neurologist, too. Since it is in the brain, he will probably give me the tests. I have to remember to call him today.

    Thank you for sending me this notification, Phylis. Both of you are good friends.


    Comment by Ruth Brown — July 14, 2011 @ 12:58 PM

    • Did you get the ecard I sent you today?


      Comment by Phylis Feiner Johnson — July 14, 2011 @ 10:44 PM

    • I hope you got an appt for the tests, Ruth. Sometimes we think our memory is terrible because we forget some stuff (like me). After my test I was relieved to find my self in the average catagory. I expected horrible results, but was relieved I was just average. I hope your test goes well. I use tricks to remember some things. For my meds. I set up 2 Dixie cups (AM and PM)for my pills. I wear a cross around my neck, so I put the cross in the AM cup. If I find myself wondering if I took my AM meds, I just check my neck for the cross.
      Bless you, Ruth and good luck


      Comment by Charlie — July 15, 2011 @ 2:40 AM

      • Actually, I’m impressed with how much I can remember…..all the way back to the age of 2.
        Not everything mind you. but enough bit and piece
        to where it all fits together.
        To remember names, I go throught the alphabet and usually when I reach the right letter the name pops up.
        Once in awhile I do forget my meds, so I’ve come up with a remedy for that.
        Along with my meds I have to put in 2 different eye drops, 1 type in the morning and the other at night.
        I have them lined up so the next one always sit in front. During the day, if the morning drops are in front that means I missed that drop along with my meds.

        Through the years I remember hearing repeatedly
        that everytime you had a seizure, you lost brain cells which eventually would create loss of memory.

        It was of Dilantins side effects……..guess what, it’s no longer on the list.


        Comment by mkfarnam — July 15, 2011 @ 4:25 AM

  60. Good Luck Ruth


    Comment by mkfarnam — July 14, 2011 @ 3:53 PM

  61. Good plan guys. I’m not so inventive. I keep my AM meds in a Monday, Tuesday, etc. pillbox and my PM meds on the sink. But somehow, it works.


    Comment by Phylis Feiner Johnson — July 15, 2011 @ 1:44 PM

  62. Mike mentioned that every time we have a seizure we lose a chip of our memory. I have had epilepsy for 62 years.

    Well now, my neurologist has stated that I have early on set stage of Alzheimer’s. He did memory tests. It is more than dementia, now. Next is the blood work and a MrI. Then the diagnoses will be complete and I will be put on a med. There are about 5. I have joined the support group at WebMD for Alzheimer’s.

    Is Alzheimer’s just as much “in the closet” as epilepsy used to be? If it is, it needs to be brought out. How else can it be treated if people deny having a health problem?

    I have a positive attitude towards having it.


    Comment by Ruth Brown — July 19, 2011 @ 3:39 PM

    • Ruth, I was told this while growing up. I remember this because they told it to me as if having seizures was a federal affense.

      Alzeimers isn’t(as much) in the shadows like epilepsy was(and in places, still is)
      Most people are aware of Alzeimers and what it does.
      As a kid I thought it was called “all timers”.

      It’s good to have a positive attitude. A negative attitude will only cause misery and depression.


      Comment by mkfarnam — July 19, 2011 @ 4:10 PM

  63. Oh Ruth,

    I’m so very sorry to hear that. I think joining the Alzheimer’s group on WebMd was a brilliant idea.

    Here are some articles that may help:

    Common Epilepsy Drug Could Prevent And Treat Alzheimer’s Disease (Valproic Acid!)


    Epilepsy Drugs Useful to Treat Alzheimer’s, Studies Find (Carbamazepine!)


    Epilepsy Drugs May Treat Alzheimer’s


    I hope these help a little.

    Also, here are two forums I found that look promising:

    ALZTALK.ORG http://www.alzinfo.org/forum/

    Alzheimer’s Association Online Community http://alzheimers.infopop.cc/eve/ubb.x

    Love, hugs and hope,


    Comment by Phylis Feiner Johnson — July 19, 2011 @ 4:27 PM

  64. Phylis, thank you very much. I am allergic to Valporic Acid and Carbamezepine. My neuro will put me on one that will not interact with my other meds.

    I will check out the forums. At WebMD, there are very few people in the Alzheimer’s Community. However, I did learn that there are 5 popular meds. that work. WebMD has excellent lnformation about it.

    If I repeat myself, you will know why. My son is glad that I told him. Hubby is in denial. That is sad!!. .


    Comment by Ruth Brown — July 19, 2011 @ 7:23 PM

  65. Oh nuts. (And here I thought I was being so smart.)

    But do check out those websites…they looked like they had large communities.

    Also, good news for me. Check out “Gratitude is the Attitude” — Part 5!


    Comment by Phylis Feiner Johnson — July 19, 2011 @ 7:28 PM

  66. Phylis, you are being smart. Do not put yourself down. Epilepsy meds would seem like the logical solution.

    Mike, my husband still calls it all timers. He is in denial about it. My son is not. He now knows why I repeat things. It is spelled Alzheimer’s. No T in it.

    Charlie, thank you for the advice. It is a good idea.. .


    Comment by Ruth Brown — July 19, 2011 @ 7:48 PM

  67. A new book by Nancy C Schumacher



    Comment by Phylis Feiner Johnson — July 20, 2011 @ 3:45 PM

  68. Hi Everyone,

    I will be gone all day. Our house is being sprayed for spiders.

    I have had my fasting blood test for Alzheimer’s this morning. The only other test is the MRI.

    Everyone, have a good day.

    Phylis, is that a book for epilepsy or Alzheimer’s?


    Comment by Ruth Brown — July 20, 2011 @ 4:28 PM

  69. It’s for epilepsy Ruth. When is your MRI?


    Comment by Phylis Feiner Johnson — July 20, 2011 @ 4:39 PM

  70. They are going to call me to tell me when my appointment is going to be.. They have not called me yet.

    I cannot buy from Amazon. Amazon refuses to sell to anyone in CA. The reason: CA demands a tax on everything they sell in CA. Amazon does not like to put taxes on anything they sell.

    Thank you anyway, Phylis.


    Comment by Ruth Brown — July 20, 2011 @ 11:33 PM

    • That’s Ca, for ya.


      Comment by mkfarnam — July 21, 2011 @ 12:49 AM

  71. Nuts. My phone died. Again. That’s 3 phones in 3 years. Is it the phone or the owner? 🙂


    Comment by Phylis Feiner Johnson — August 7, 2011 @ 3:23 PM

    • I paid 1 penny for my phone 3 yr;s ago and still use it. (US Celliulete)


      Comment by mkfarnam — August 7, 2011 @ 7:41 PM

      • You’re joking. (Although I know you’re not.) If you knew how much I’ve spent on cell phones it would make your hair stand on end. (And I’m NOT telling you!)


        Comment by Phylis Feiner Johnson — August 8, 2011 @ 11:43 AM

  72. I do not have a cell phone. Phylis, you are the owner, aren’t you, or is AT&T or Verizon?

    You can buy a cheap cell phone at WalMart. The problem with that is you can only use one area code. You cannot call everywhere in the world.

    Mike, where did you buy yours?


    Comment by Ruth Brown — August 7, 2011 @ 8:18 PM

    • US Cellular…….the 1 penny phone program is still open across the country.


      Comment by mkfarnam — August 7, 2011 @ 9:02 PM

    • AT&T, the web and anywhere I can find an unlocked phone since I lose so many. Note: I use my phone for email and texting too, so I need a data plan.


      Comment by Phylis Feiner Johnson — August 8, 2011 @ 11:46 AM

  73. Mike, I will check into it.

    Phylis, I had my MRI, July 28. I get the results of everything for my diagnosis, August 23. I will let you know the results. My memory is getting worse, hubby has noticed it.

    Like I said in my story, I still have a positive attitude and Jehovah has seen me through all of my challenges. Thank you Phylis for editing the story.I am happy with it.

    I am glad that it is finished before my memory gets worse.


    Comment by Ruth Brown — August 7, 2011 @ 10:44 PM

  74. PLEASE Ruth, do let us know your MRI results. And look on the bright side, now you have a written account of your story to save.


    Comment by Phylis Feiner Johnson — August 8, 2011 @ 11:48 AM

    • I had an MRI done about 2 years ago, but it was for my hip. I couldn’t walk half way down a Walmart isle without it being so sore I had to sit down, Anyway, I never received the results until I called them a year later. They sent the results and this is what it said: : We found no problems with your L wrist and elbow…….. I so f*****g MAD I could kill them! (they were lucky to be 30 mi’s away)
      I had to wait a couple days to calm down before I called and chewed their asses out!
      They’re response:… Well, Mr Farnam, we’ll have to set you up for another MRI.
      My respone:…..”NO!! This is what’s going to happen, This is considered malpractice and If I receive another Bill for this, your office will be reported to MediCare”!

      They stopped Billing me.


      Comment by mkfarnam — August 8, 2011 @ 3:13 PM

  75. Phylis, I will tell you the results of whether I have an early stage onset of Alzheimer’s or not.

    Hi Mike, good for you!!

    I have found out at the Alzheimer’s community at WebMD, that people quit associating with people with Alzheimer’s when they reach med stage. I am talking about friends, relatives. It is so hard on the caregiver’s. I put in a reply to a caregiver and she has not answered me. I know how caregiver’s feel, because my husband and son are my caregiver’s. It is hard on them.

    There is little education to people about Alzheimer’s. Very little. It is still “in the closet.” It is very sad!!

    I still have a positive attitude. I feel that if my friends leave me, then they were not my friends anyway.

    Alzheimer’s patients need advocates, like you Phylis.


    Comment by Ruth Brown — August 9, 2011 @ 3:30 AM

  76. Ruth, have faith in the Lord.
    Your in my prayers.


    Comment by mkfarnam — August 9, 2011 @ 4:19 AM

  77. Thank you Mike,

    I pray and trust in Jehovah. He keeps me with a positive attitude and he helps me through all of my challenges.

    This is another challenge that I will get through.

    I know everyone here is very understanding. That is why, I can talk about it here. I asked my son what I did this afternoon. He said that I fell asleep all afternoon. So it was not Alzheimer’s.

    Maybe I ate too much and messed up my diabetes. That can make me sleep. I will have to be more careful.


    Comment by Ruth Brown — August 9, 2011 @ 5:19 AM

  78. Ruth, It’s such a complicated situation with your diabetes and your epilepsy. Please make sure you take good care of yourself.

    As far as people who shut off relations at the med state of Alzheimer’s…I think it’s a little like epilepsy. They don’t know what to say…they don’t know what to do. They’re thinking about THEMSELVES…about how to cope…instead of the patient and how they’ll cope.


    Comment by Phylis Feiner Johnson — August 9, 2011 @ 12:16 PM

  79. I remember when my father in law had Alzheimer’s. We kept visiting him and talking to him. We knew that he must have understood some of what we were saying. We would visit him and had absolutely no problems coping. Sometimes, I think he was teasing us and knew exactly what he and the rest of the family was saying.

    Do you have a problem talking to a person with epilepsy, who is in seizures? Of course not, you know that the person will understand some of what you are saying.

    It is the same thing when I was in my coma. I could hear some of what was being said, sometimes.

    So, Phylis, I have had experience with Alzheimer’s. It was my father in law. The whole family visited him quite often until he died. Our love was not conditional on how we coped, but how he was.

    My husband’s family visited me quite often, even during my bad times with my epilepsy. So did my family!!

    There is absolutely no excuse, either you love and care for a person or you don’t. You are a friend or you are not.

    That is what I feel like telling them and anyone else who are selfish and thinking about themselves.


    Comment by Ruth Brown — August 9, 2011 @ 2:11 PM

    • Ruth, This is my own 2 cents from what I’ve seen through my life.
      I feel that when a family or a person grows up around people or a person with Disabilities, they’re less likely to shy away from others with a disabilty.
      I never realizes it until right now, that through my life, I always felt closer and made friends easier with people with a disability…..And most of the time, I didn’t know they were disabled until some time later.
      Another thing I just realized is: with the 40+ years of not being in contact with my other brothers and sisters, they still look at me as
      the epileptic the knew as a kid.


      Comment by mkfarnam — August 9, 2011 @ 4:24 PM

      • It’s ironic that you should say that Mike.

        We have a 32 year old friend with arthrogriposis. In short, he was born with all his joints twisted.

        He’s had 18 surgeries…has shown incredible bravery…and is my personal hero.

        (In fact, Arthur sort of adopted him as a “nephew” and sent him to business school. But that’s another story for another day.)

        Any way, back to the point…

        When I look at him, I see John. Pure and simple. I forget that he’s handicapped. Although it is extremely visible, it doesn’t even register. All I see is this great kid, with a terrific smile and tremendous integrity.


        Comment by Phylis Feiner Johnson — August 9, 2011 @ 4:51 PM

  80. BRAVO!


    Comment by Phylis Feiner Johnson — August 9, 2011 @ 4:08 PM

  81. Hi Phylis,

    You say BRAVO! What did you mean in number 8, about not knowing what to say to someone with Alzheimer’s?


    Comment by Ruth Brown — August 9, 2011 @ 4:27 PM

    • I say “Bravo” for your attitude…your grit…and your steadfastness.

      As for #8 “not knowing what to say when someone has Alzheimer’s” the answer is simple. It’s THEIR loss.


      Comment by Phylis Feiner Johnson — August 9, 2011 @ 4:44 PM

      • Yes, it is their loss. Thank you for the compliment. Sorry, I misunderstood you.

        I do feel for the caregiver’s, because they are usally paid to take care of the person. They need breaks from working. They need another person to help them. They usually do not have anyone to help them.


        Comment by Ruth Brown — August 9, 2011 @ 4:52 PM

  82. Mike, you are right to an extent. My sister had/has epilepsy and yet she disowned me. My mother raised 2 children with epilepsy and she disowned me after my father died. My father and grandfather were keeping me in the family.

    I kept wanting to visit my mother while she was dying of cancer. She would not let me visit her. That was after my father died.

    My mother had a distant cousin living next door to her. My distant cousin’s family would not visit her or care for her.. They were well off. They lived in the same city. Do you know who took care of her? My mother did.

    My mother accepted some people with disabilities and not other’s..

    I never understood that, because she accepted my sister, who had epilepsy.


    Comment by Ruth Brown — August 9, 2011 @ 4:46 PM

    • That IS very strange. It makes no sense, but…

      On the caregiver topic, there’s a wonderful book that was written called “The 36 Hour Day.”


      Comment by Phylis Feiner Johnson — August 9, 2011 @ 4:59 PM

  83. I will recommend that book to caregiver’s. Maybe, I will buy it for my husband.

    Because of my memory, my husband is going to all of my doctor’s appointments..


    Comment by Ruth Brown — August 9, 2011 @ 5:11 PM

  84. Well it’s ALWAYS good to have a second pair of ears at your doc appointments.



    Comment by Phylis Feiner Johnson — August 9, 2011 @ 5:45 PM

  85. Does anyone have more than one condition other than Epilepsy?

    I know Ruth has Diabetes. I have Colitis and boy, it is a bear. Yesterday, I lost 3 pounds.


    Comment by Phylis Feiner Johnson — August 10, 2011 @ 3:52 PM

    • I’ve been told I had

      A touch of Emphysema
      I was borderline Diabetic

      But I don’t see any doctors or take meds for any of it


      Comment by mkfarnam — August 10, 2011 @ 10:08 PM

  86. Hi Mike,

    For your diabetes, do diet and exercise. You do not need meds for it.That was the biggest mistake I made, was going on meds for it. That gives you a false sense of security. You still have to diet and exercise.

    I am on the Glycemic Index Diet. It works for diabetes. BTW, you were misinformed. I belong to two diabetic forums. I have found out that their is no such thing as boderline diabetes.

    You do have a slight case of diabetes. You do have diabetes. Did you have a blood test to find out? Ask for a copy of any tests that they have done and have your doctor explain it to you. Your A1c should be under 6.5. If it is 6.5 or more then that, you have diabetes.


    Comment by Ruth Brown — August 12, 2011 @ 7:44 AM

  87. We’re moving on — Talk About It –Part #2


    Comment by Phylis Feiner Johnson — August 14, 2011 @ 3:42 PM

  88. Daarnaast kunt u rimpelvorming voorkomen met diverse behandelingen. Beste middel tegen striae vlog oslim.cremes.amsterdam. Britse vrouwen denken een wondermiddel ontdekt te hebben.


    Comment by MelvinEvary — November 4, 2017 @ 7:13 PM

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,797 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: