Epilepsy Talk

Talk About It — Part #2 | August 14, 2011

“Open the door and come on in,

I’m so happy to see you again…

you’re like a rainbow comin’ around the bend,

and when I see you happy…

it sets my heart free,

I’d like to be as good friend to you…

as you are to me.”    —   Carol King


Posted in Epilepsy
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138 Comments »

  1. Love it…..
    Love it …..
    Love it……
    with a head that is rolling like a rock I needed to read this

    Thanks!!!!

    Like

    Comment by Toni Robison — August 14, 2011 @ 5:43 PM

  2. Having just returned from my yearly summer gathering of college friends, this struck me at the perfect time. There is someone in my life who doesn’t like me, who rejects me, and who keeps me out of important situations, and this causes heartache for me. But my college friends are like Carole King’s lyrics, they are “happy to see me again.” To be part of a non-judgmental group of friends who are truly happy to see me, who accepts me for who I am with all my faults and foibles, is a gift and blessing. Thank you for sharing this today. I needed it especially.

    Like

    Comment by Maggie — August 14, 2011 @ 5:53 PM

  3. Having just returned from my yearly summer gathering of college friends, this struck me at the perfect time. There is someone in my life who doesn’t like me, who rejects me, and who keeps me out of important situations, and this causes heartache for me. But my college friends are like Carole King’s lyrics, they are “happy to see me again.” To be part of a non-judgmental group of friends who are truly happy to see me, who accept me for who I am with all my faults and foibles, is a gift and blessing. Thank you for sharing this today. I needed it especially.

    Like

    Comment by Maggie — August 14, 2011 @ 5:55 PM

  4. Oops, I was trying to edit something but it turned up twice. Sorry.

    Like

    Comment by Maggie — August 14, 2011 @ 5:55 PM

  5. Sunday Lesson

    Read
    Ecclesiastes 3:1-8
    http://www.bartleby.com/108/21/3.html#S3

    Then tell me if you recognize the words from years back.

    Like

    Comment by mkfarnam — August 14, 2011 @ 8:11 PM

  6. To every season turn , turn….. we had this in our wedding! I love it! 20 years ago!!!!!

    Like

    Comment by Toni Robison — August 14, 2011 @ 10:36 PM

  7. Ecclesiastes 3:1-8 For everything there is an appointed time, even a time for every affair under the heavens: 2 a time for birth and a time to die; a time to plant and a time to uproot what was planted; 3 a time to kill and a time to heal; a time to break down and a time to build; 4 a time to weep and a time to laugh; a time to wail and a time to skip about; 5 a time to throw stones away and a time to bring stones together; a time to embrace and a time to keep away from embracing; 6 a time to seek and a time to give up as lost; a time to keep and a time to throw away; 7 a time to rip apart and a time to sew together; a time to keep quiet and a time to speak; 8 a time to love and a time to hate; a time for war and a time for peace.

    Thank you Mike. That is a good idea to have a daily Bible reading. I read my Bible everyday, not just on Sunday’s. I am sure you do to.

    If you want to read the Bible online, you can go to http://www.watchtower.org It is the Official Site of Jehovah’s Witness. You will also find other information about the Bible, there.

    Like

    Comment by Ruth Brown — August 15, 2011 @ 2:09 AM

  8. Thank you both. Beauty and wisdom surrounds us.

    Like

    Comment by Phylis Feiner Johnson — August 15, 2011 @ 3:10 PM

  9. Sorry I’ve been MIA so long.

    Lighting struck our cable splitter box and we were kinda paralyzed for 3 days. 😦

    Like

    Comment by Phylis Feiner Johnson — August 21, 2011 @ 3:02 PM

  10. Phylis, I am sorry to hear that. We have an antenna because we cannot afford cable anymore.

    Our bathroom flooded last night. It is a good thing that we have 2 bathrooms. We are going to have to replace the tile and the backboard. We did not get much sleep last night. It soaked part of the carpet in our closet.

    I was wondering why I am not getting any messages anymore. Where is everyone else? We usually talk when you have to be away.

    Like

    Comment by Ruth Brown — August 22, 2011 @ 2:25 AM

    • Phylis wins on the Lightning hitting the cable splitter box!!!

      That is why I gave her the the thumbs up!

      My mind has been like mush at times and I cannot think very well! I read instead!

      Like

      Comment by Toni Robison — August 22, 2011 @ 3:12 AM

  11. Hi Toni, glad to hear from you. Yes, the computer does make our minds like “mush.” I like the way you word it.

    I like to read the Bible.

    Tomorrow, I find out what the results of my tests are. I either have an advanced stage of dementia or Alzheimer’s. I will let everyone know when I know.

    Like

    Comment by Ruth Brown — August 22, 2011 @ 6:18 AM

  12. Oh Ruth, good luck. And be sure to keep us posted. Our hearts and thoughts are with you.

    Like

    Comment by Phylis Feiner Johnson — August 22, 2011 @ 1:50 PM

  13. Nah, Ruth! Give you a hug! It’s a nice day today!’

    This is where I like to go-

    Row, row, row, your boat!

    It’s just right temperature! ENJOY it everyone!!

    Like

    Comment by Toni Robison — August 22, 2011 @ 2:57 PM

  14. Thank you for the hug, Phylis.

    I went to the doctor today to see if I have Alzheimer’s. The tests came back good. My memory is getting worse. He put me on Aricept, which is for Alzheimer’s. I believe it is just starting. He said that I have advanced dementia that will turn into Alzheimer’s.

    I am not worried, I am still thinking positive. It is another challenge that I am facing. That is why I talked to the doctor right away. Hubby thinks that I have it too. He talked to the doctor about my memory loss.

    Yes Phylis, I hear that the hurricane that hit Pouerto (SP?) Rico is coming your way. You have a possible flood coming. Keep us in touch.

    Love, Ruth

    HUGS, Phylis, you need it for rowing your boat. I hope you do not have to.

    Like

    Comment by Ruth Brown — August 23, 2011 @ 7:21 AM

  15. Well Ruth, I guess that’s good news mixed with bad news. All I can say is enjoy the moment…and hope the Aricept does its job in stalling Alzheimer’s.

    After a whole week of torrential rain, I can’t say I’m looking forward to more. But what will be will be. You can’t change mother nature.

    But maybe I should get a paddle, just in case! 😉

    I’m rooting for you…with many hugs.

    Like

    Comment by Phylis Feiner Johnson — August 23, 2011 @ 1:44 PM

  16. Ruth,
    Stimulate yourself w/ exercise! Read, dance, take a class! I’m on disability worked at University in a dementia research clinic. I gave them a thrill w/ a sz!

    Be careful w/ the rain! I know what you can do!!!!

    You are definitely getting a hug from me! 🙂

    Like

    Comment by Toni Robison — August 23, 2011 @ 4:23 PM

  17. Thank you Toni for the advice. I have been doing a lot of housework this morning. I plan on doing exercise later on. today. I already feel a lot better.

    What do you mean, “watch out for the rain?”

    Thank you for helping me out Toni, I can use any advice that I can get. 🙂

    Thank you for the hug. You have cheered me up.

    Phylis, you need a row boat. When I was a teenager, our town flooded. A few people had row boats and had fun going all over the town.

    A great big HUG for you Phylis.

    Like

    Comment by Ruth Brown — August 23, 2011 @ 5:46 PM

  18. EARTHQUAKE, is everyone all right? I heard that there are gas leaks. I sent Phylis the whole story.

    I am use to earthquakes. I live in CA. You usually do not have earthquakes.

    Like

    Comment by Ruth Brown — August 23, 2011 @ 8:43 PM

    • Nope. Everything is A-OK. We felt a weird rumble (we’re not attuned to earthquakes here) and that was that. Never thought twice about it.

      Like

      Comment by Phylis Feiner Johnson — August 23, 2011 @ 9:04 PM

  19. I forgot to add that I love you all.

    HUGS, Ruth

    Like

    Comment by Ruth Brown — August 23, 2011 @ 8:44 PM

  20. Actually, the idea of a row boat is tempting, because we have a pond right in front of our house. But there wouldn’t be very far to go…it’s a small pond. Three strokes and we’d be on the other side!!! 🙂

    And guess what? It’s bright and beautiful today. Perfect for our epilepsy golf fundraiser!

    Like

    Comment by Phylis Feiner Johnson — August 23, 2011 @ 8:46 PM

  21. Having lived in Los Angeles and feeling this one I thought because of the length of it that it would be a 6. The Cathedral in Washington DC had damage. Our house had things move a litte bit. Things fell off the desk.
    It was a roller!!!
    My son was working at Safeway in the back and didn’t feel it but in the front of the store was a mess!
    No injuries in our area!

    Like

    Comment by Toni Robison — August 23, 2011 @ 11:52 PM

  22. Hi Toni,

    Glad everyone is all right. The news here said that it was a 5.9. You were right on the dot.

    I have gone through many earthquakes here and I would not be surprised if we had one.I sure felt the big one in 1989 in the San Francisco Bay Area. At that time I lived in San Jose. It during the Baseball World Series between the SF Giants and the Oakland A’s. Do you remember that one, Toni?

    I have lived all of my life in CA. That is, except when my husband was in the Army. I was out of CA for about 3 years.

    I hope the Hurricane misses all you and goes out into the ocean. Phylis, that is what I was talking about. That is cute though, about your pond. You have a good sense of humor.

    Like

    Comment by Ruth Brown — August 24, 2011 @ 2:29 AM

    • I remember that one, because they contemplated about the game! The double decker freeway collapsing!!! Saving people it was a mess! I maybe getting earthquakes mixed up! Did the Oakland bridge upper level do something. I think that was later. Los Angele we had the double earthquake w/ in 2 min one in Big Bear and the other in the desert that was 94 I think.

      I learned to do earthquake safety to our cabinets,
      furniture and keepng extra water , meds, food in home

      Like

      Comment by Toni Robison — August 24, 2011 @ 3:47 AM

  23. Here, it was just a little rumble. Like the Jolly Green Giant was paying a house call. 😉

    Like

    Comment by Phylis Feiner Johnson — August 24, 2011 @ 1:30 PM

  24. Hi Toni, It was the Cypress Freeway in San Francisco that collapsed like a pancake. People were killed on the bottom deck.

    The Bay Bridge to Oakland cracked and they had to close the freeway. It was only the top level. It is still weak. They have to keep fixing it. The last several times that I went through the Golden Gate Bridge, It looks a lot weaker. I do not think either freeway can survive another earthquake.

    I was shocked when I heard that the Bay Bridge had cracked and a few cars fell into it. Nobody was hurt, though.All 3 freeways had been built to earthquake standards.

    Phylis, as you know all ready, you are having aftershocks. They will get less and less in strength.

    Like

    Comment by Ruth Brown — August 24, 2011 @ 6:06 PM

  25. Ruth,

    I need to take the med, for dementia! You are doing great!

    Our aftershock at 8 pm last night was a 5.0, The jerks are slightly different. they dont slide like the san andreas or the ones in LA they are rollers but the others are 2’s. You are great!

    Toni

    Like

    Comment by Toni Robison — August 24, 2011 @ 6:54 PM

  26. Hi Toni,

    My memory seems sharper since I have been on the Aricept. Is that the one you are on. It causes drowsiness so I take it at dinner time, so I can sleep all night. Tonight I have insomnia anyway.

    I am surprised you only had one aftershock. We usually have a whole lot of smaller ones along with the 5.0 and sometimes larger.

    Have you found a safe place to exit your home if you have too? That is the first thing I do whenever we move. Do not exit where there are electric wires. If you cannot leave the house at all, then the safest place is the bathtub. It only has a small window and it is the safest structure in your home.

    For anyone here who does not know, never take an elevator during the aftershocks.An elevator can come crashing down, if it is weak enough.

    If you have another big one, be ready to turn off the gas and the water to your house. Also, it is a good idea to have 3 days of canned food and distilled water set aside for emergencies. That includes hurricanes, too. I hope Irene goes off into the ocean where she belongs. Sometimes, they do change course.

    Keep me updated about what is going on. Sorry, if I am going on and on. I just want everyone to be safe.

    Like

    Comment by Ruth Brown — August 25, 2011 @ 8:07 AM

  27. Glad the Aricept is starting to work. And thanks for the excellent advice.

    One more piece of advice from Charlie: get your pills refilled before the hurricane hits!

    Like

    Comment by Phylis Feiner Johnson — August 25, 2011 @ 2:49 PM

  28. We have the boy scout camping food! We are always prepared for the hurricane weather. We have used it twice and its not bad!

    We started off we shake, rattle and roll, today we got wet and the weekend a royal soak!

    Like

    Comment by Toni Robison — August 25, 2011 @ 3:04 PM

  29. It’s raining buckets here (in PA.)

    Like

    Comment by Phylis Feiner Johnson — August 25, 2011 @ 3:51 PM

  30. I am worried about everyone with this hurricane.

    Did you know that they are talking about evacuating NYC? If I was told to evacuate, I would, my husband said he would too.

    Please evacuate, take your important papers, clothes some food and evacuate.

    This hurricane is gaining in strength. It is not going to be a small tropical storm. The news has said that anyone who does not evacuate will not receive any assistance.

    Remember what happened to those who did not leave when told to in Louisiana. They were stuck without medical assistance. Believe me, the doctors and nurses will evacuate.

    You might think that I am over reacting, but I am not. Please all of you go West, at least a few hundred miles. They say there has not been a storm like this since 1882.

    I love you all and I hope you listen to the news that says to evacuate.

    Like

    Comment by Ruth Brown — August 26, 2011 @ 6:43 AM

  31. WE are now under a Tropical Storm Warning in Montgomery County in Maryland!

    Like

    Comment by Toni Robison — August 26, 2011 @ 2:20 PM

  32. No warnings here…yet. But I’m closely watching the news.

    Like

    Comment by Phylis Feiner Johnson — August 26, 2011 @ 2:28 PM

  33. They have said on the news here that the mandatory evacuation is clear up to the NJ shores. That is by PA. They are going to evacuate NYC. You want to leave before they start evacuating there.

    Once they start evacuating NYC, the roads will be almost impossible to leave. Please leave now, before they start evacuating NYC.

    I know someone on the internet who lives in PA wants to leave but she only has $25. Her health problems eat up her money each month. Can anyone of you help her? Her family has a lot of health problems, as well.

    Her email address is joanwantschange@yahoo.com Her name is Joan. She is a really nice person.

    Like

    Comment by Ruth Brown — August 26, 2011 @ 2:55 PM

  34. Everyone, please talk about your experience with Irene. I cannot wait to hear from you.

    Like

    Comment by Ruth Brown — August 29, 2011 @ 12:41 AM

  35. We had trees down and power outage in our area. They were prepared and we only had 12 hrs of no electricity, We were fortunate in Maryland. There were electric companies from Kentucky, and Illinois in our area! Cool! Thx for your help!

    The electric company has been cutting trees back all summer they have been preparing for hurricaines. I am grateful they have otherwise it would of been a real disaster.

    Like

    Comment by Toni Robison — August 29, 2011 @ 2:06 AM

  36. Toni, I am so glad that you made it all right through the Hurricane. It was great that the state had prepared for it and that your electricity came from other states.

    Cares and HUGS

    Like

    Comment by Ruth Brown — August 29, 2011 @ 2:30 AM

  37. Hi everyone,

    I have no internert service and I don’t know when I’ll get it back. it’s been real adventure but no harm to anything but the power and the net.

    Please take care of each other and I’ll be back when I have internet service.

    Big hugs!
    Phylis

    Like

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

  38. Hi Phylis, glad to hear from you. We are glad you are all right.

    Charlie is all right too.

    HUGS to everyone

    Like

    Comment by Ruth Brown — August 29, 2011 @ 10:03 PM

  39. Charlie still has no internet. So, we are texting and I’m going blind on this tiny phone screen. It’s also frustrati

    Like

    Comment by phylis feiner johnson — August 30, 2011 @ 7:47 PM

    • GROWL – Come on Internet connection! We don’t want Phylis to go blind!!!

      Like

      Comment by Toni Robison — August 30, 2011 @ 7:57 PM

  40. My daughter and her family did not get any damage at all.

    I just heard from Joan, her internet is finally fixed. I am so glad when I hear that someone is all right.

    There is so much flooding in NJ and Vermont from the news I have seen here. Does anyone from our family live in those areas that are flooded out? Has anyone heard from them?

    LOVE and HUGS,

    Ruth
    Maybe we should write in capiltal letters from now on, so Phylis’s eyes will not be strained.

    Like

    Comment by Ruth Brown — August 31, 2011 @ 2:39 AM

  41. YEEEEE HAAAAA! Internet service at last!

    We are going to switch to VIOS (Verizon) to be our primary carrier with Comcast for a back-up. That way, we’ll be covered, come hell or high water!

    I missed you all sooooo very much.

    Like

    Comment by Phylis Feiner Johnson — August 31, 2011 @ 1:22 PM

  42. Hi Phylis, we all missed you too.

    My daughter has comcast and she had no problem getting back her internet.

    If you need to delete any of my comments, go ahead. I might say something that I do not mean. Remember, I have early stage Alzheimer’s.

    Like

    Comment by Ruth Brown — August 31, 2011 @ 6:05 PM

  43. I have some very upsetting news. You remember, I told all of you that I go voluntee3r at the hospital on thursday, right? Well last night at 9 pm, (wed), she calls me and tells me that my seiz scare her and that she will no longer bring me. I was upset, mostly at the fact that she waits till the night before I am supposed to volunteer to tell me. Oh, that upset me so. How do I educate people about my seiz and its nothing to be afraid of? What about the other woman that will pick me up fpr volunteer on monday, what do I tell her? How do I tell her?

    Like

    Comment by jennifer schnegg — September 1, 2011 @ 12:00 PM

  44. Some people will never learn. 😦

    Perhaps you should tell the other woman that you have seizures and what to do if you have one.

    Like

    Comment by Phylis Feiner Johnson — September 1, 2011 @ 12:08 PM

    • this woman knew. The woman that now refuses to take me. She is in my choir at church, and has seen them before in choir practice. I tell everyone that needs to know, about my seizures. Im not afraid of telling them. Im going to ask other people if they are willing to take me, but how? Im going to scream bloody murder if the hospital were to turn me away. I really will.

      Like

      Comment by jennifer schnegg — September 1, 2011 @ 12:14 PM

  45. Just because one person doesn’t want to take you doesn’t mean that there aren’t other people willing.

    The whole church can’t be full of wimps. And if you do have trouble, go to the person in charge and ask if she can help you and offer you any suggestions.

    Like

    Comment by Phylis Feiner Johnson — September 1, 2011 @ 12:22 PM

  46. yes, you are right. That makes me smile. Thanks.

    Like

    Comment by jennifer schnegg — September 1, 2011 @ 12:24 PM

  47. Jennifer, I am glad that you are smiling now.

    This is the way that I have always looked at people: If she will not take you, then she is not a true friend. Not everyone wants to be educated about epilepsy. Over the years, I have found that to be true.

    The woman who is willing to take you sounds like your health problems do not matter. She likes you for who are. I do not think she needs to be educated. She is a true friend.

    I would not make a big deal about by going to the person in charge. That can cause more problems with other people in your religion..

    Stay with the friend who is a true friend. She might not understand if you take it to the person in charge, since she is a friend.

    Like

    Comment by Ruth Brown — September 1, 2011 @ 4:44 PM

  48. Jennifer, I read your comments about your epilepsy and getting rides.

    I am puzzled about 1 thing. One is that you are a hospital volunteer. A hospital worker should understand more than anyone. Maybe she needs gas money for you to share in the gas. Have you offered to help out. Gas is so expensive nowadays. Maybe she is having money problems that she does not want to talk about.

    Can you take public transit?

    Like

    Comment by Ruth Brown — September 2, 2011 @ 6:31 AM

  49. Ruth, I was thinking, I had asked the woman wgy she waited till the night before to tell me, she wont take me. She told me, she was on the phone with her daughter, and her daughter told her not to give me rides. I figured that much.

    Like

    Comment by jennifer schnegg — September 2, 2011 @ 12:50 PM

  50. I spoke with me mother, last night and told her that I wouldnt mind paying the 14 $ with public transportation to hospital. It would be worth the cost. Yes it is a high cost. I am sure that with time some of the other volunteers will offer to give me a ride every now and then.

    I am sure that the hospital will not turn me away because of my seiz. The hospital volunteer director had told me, that they have another volunteer that also has seiz.. and she has been to the ER a few times already.

    I told the other volunteers that work in the same room as I, about my seiz. and what they look like. I also told them, that I do not need to go to the ER. They all said OK.

    They were a funny bunch yesterday. They were laughing and talking about some weird subjects.

    I had a good time.

    Like

    Comment by jennifer schnegg — September 2, 2011 @ 1:22 PM

    • volunteering in the gift shop I had a seizure and shoved all the products off the counter! Next thing I remember hearing is what happened and I said I don’t honestly know 🙂 Picked it up and put it pack ! The man looked at me funny and I explained it was a seizure and he started to talk about family problems. It ended! We listened to each other which was great!
      Go Jennifer!

      Like

      Comment by Toni Robison — September 2, 2011 @ 3:22 PM

  51. Way to go Jennifer. Turn lemons into lemonade!

    Like

    Comment by Phylis Feiner Johnson — September 2, 2011 @ 1:54 PM

  52. Toni, I heard a story where a man had epilepsy and a man next store asked his wife if he could ask the neighbor (his wife) about it.

    The wife said “sure.”

    So, to make a long story short, the man went over to the neighbor and asked him about his epilepsy. The neighbor talked for two hours!

    Like

    Comment by Phylis Feiner Johnson — September 2, 2011 @ 4:00 PM

  53. Good morning. How was everyone’s Labor Day weekend?

    I went to my niece’s baby shower and then had a delicious two days with her and her husband. Just hanging out and relaxing — enjoying their company…

    Like

    Comment by Phylis Feiner Johnson — September 6, 2011 @ 2:44 PM

  54. hi everyone,

    good news, today was a success! I went to voluntee4r at the hospice flea market from 9:30 am – 2:30pm. I really enjoyed it and an looking forward to next week. Tomorow will be my music lesson day. Then on thursday will be volunteer at the hospital.

    It was interesting, because after I told her that I had epilepsy, she told me that she has a brother that has epilepsy. She even is a twin.

    Like

    Comment by jennifer schnegg — September 6, 2011 @ 11:59 PM

    • Jennifer,

      You are great! You are inspiration! THX!

      Like

      Comment by Toni Robison — September 7, 2011 @ 12:40 AM

  55. Jennifer, So the driver has epilepsy and her brother? Ah what skeletons lie in every closet!

    Like

    Comment by Phylis Feiner Johnson — September 7, 2011 @ 3:15 PM

  56. no, she doesnt, her brother does.

    Like

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

  57. Hi Jennifer,

    I am glad for you that you are happy with your life. Isn’t it great when things go right.

    Like

    Comment by Ruth Brown — September 9, 2011 @ 2:58 PM

  58. I broke up with my boyfriend. Yes, I loved him, but I saw some things that I didnt like.
    Its about the phone situation. We were watching tv one day, and I got a phone call from my choir director. I had been trying to reach him. I went out of the living room a few min, and wen I got back, he had a fit. He told me that I shouldnt do that. I should only talk on the phone when im in front of him. well, last saterday he was on the phone 12 times off and on. I wouldnt have thought anything about it if he werent on it all day, except for he spoke spanish. I dont understand spanish. I told him that it was rude to be on phone all day, much less spanish. He can speak very good english. Ill write more later, I need to go volunteer this morning.

    Like

    Comment by jennifer schnegg — September 12, 2011 @ 1:13 PM

  59. I volunteered all day. I didnt want to go home. Im just in disbeleif about him. Luckily I have things to do to keep busy, and people there to socialize with., where I volunteer

    Like

    Comment by jennifer schnegg — September 14, 2011 @ 12:36 PM

  60. I am in bad shape. I have not heard from anyone in several days. What has happened. I have not gotten any emails from anyone.

    I have been having seizures, forgetting things, seizures. falling against the tile in the shower. All my neurologist knows how to do is add one more pill. He told me that I need to have a walker all of the time. I asked him what about when I have to let go of my walker to do housework? He said, I could not do any housework anymore.

    I have been anyway. Please give me ideas to help me.

    Like

    Comment by Ruth Brown — September 21, 2011 @ 2:05 AM

    • I know from my doctor that there are exercises (usually at a rehab clinic — get your doc to write a prescription) that can help with your balance. Yoga and T’ai Chi also help, but I wouldn’t know where to start.

      See if this can help. We’ve missed you.

      Like

      Comment by Phylis Feiner Johnson — September 21, 2011 @ 2:19 PM

  61. Ruth,
    I put the info in the other note. I also go outside to get fresh air! I found out after 4 years that my vns has been giving me more problems. Get a second opinion. I finally did. My GI and ENT finally contacted the Epileptologist what the problem is. You are a good person. If you can get a second opinion it would be great!

    Like

    Comment by Toni Robison — September 21, 2011 @ 2:35 AM

  62. I wish I could go outdoors, but we have unhealthy for everybody air.

    If I go outdoors, I have asthma like crazy. They even recommend staying indoors with this bad air quality. Rain will get rid of it. We are having 100 degree weather where I live.

    Like

    Comment by Ruth Brown — September 21, 2011 @ 3:22 AM

    • I know from Arthur and my mother-in-law that there are certain bad pollen and poor air quality days when they advise you to stay indoors.

      Do you have a Heppa Filter to filter out the impurities in the air inside your house? It helps immensely.

      Like

      Comment by Phylis Feiner Johnson — September 21, 2011 @ 2:24 PM

  63. Im sorry Ruth, to hear that you have been having it rough. It would not stop doing house work. What would you then, sit around all day? No way.

    What kind of seiz do you have? Where do you live, that the air quality is that bad? I havent been on much, because I have been very busy with my music and volunteering. Things will get better. Maybe things need to be altered, the way you do house work, so that you can still do it. If I think of any ideas, i’ll let you know. Do you have carpeting, or wood floors in house? If you dont mind, I would like some info about your seiz, so that I can come up with some house work ideas. If not, thats ok.

    Take care.

    Like

    Comment by jennifer schnegg — September 21, 2011 @ 12:49 PM

  64. Hi Jennifer, I do not know why our air quality is so bad. There are Air Alerts for bad air quality about everyday.

    You are right, though, about not sitting around the house,

    My seiz are pretty much under control, it is my Alzheimer’s. My memory is shot. Alzheimer’s is still in the closet,” even in the Alzheimer’s support groups. They only want to have the support for the caregivers. The caregivers do not want support from any person with Alzheimer’s.

    Earlier today, I hurt Mike’s feelings. I hope I do not say anything that will hurt your feelings. I did not mean to hurt Mike’s. I do not always say the right thing anymore. That is why I have not been commenting.

    I appreciate your advice. Our house has Pergo floors in the kitchen. We had re done the house and we are sorry that we put carpet in the rest of the house. Wood floors are easier to clean. Carpets are just dirt collector’s. Now, we cannot afford to replace the carpet. I want hubby to buy a steam cleaner.

    I have had a couple of bad seizures and fell against the tile. That has not helped my brain. I have 3 brain problems that work against each other in my brain, Epilepsy, Diabetes and now Alzheimer’s. Each one can act up and cause a seizure, via my epilepsy.

    Like

    Comment by Ruth Brown — October 5, 2011 @ 12:03 AM

    • Im so sorry to hear that. You will not hurt my feelings, I thought that I hurt yours, or was getting into your conditions that you didnt want to talk about.. Im sorry. I really am. Just let me know, if im getting too personal. I just wanted to help.

      I had many seiz today. simple and complex. I was volunteering and had many. At 12 pm, I reallized that I had forgotten my morning meds. The woman that works with me, knew that I had them. She kept making sure I was always with her. That bothered me. I let her know, that I didnt need it, I will be ok.
      I tryed to say it nicely, that it felt like she was babying me. I didnt know how else to let her know. She said its ok. She didnt know that I didnt like it. She has a brother that also has seiz. Apperently he did. She told me that she appreciated me telling her. She is alittle older than my parents.

      Like

      Comment by jennifer schnegg — October 5, 2011 @ 2:37 AM

      • I don’t know how…but somehow I forgot my meds for TWO days. I was sick as a dog. 😦

        Like

        Comment by Johnson — October 5, 2011 @ 3:50 PM

      • Better her concern than ignoring you!

        Like

        Comment by Johnson — October 11, 2011 @ 2:07 PM

  65. Ruth and Jennifer ,
    You and everyone are special people that are really like! I always enjoy reading your comments and I always want to give you a hug! You go forward and deal w./ it.

    I am taking liquid meds. I get angry or confused and want to blame people and the only one to blame is myself.

    My husband indicated it is the amt, of medication and I cannot eat, It is time to see another doctor, I want to throw the meds out,

    The doctor told me it is not serious but the GI doctor needs to help you and they tell me you are seizing you need more medication, I just want to work?

    Maybe it;s the anniversary? Who knows but I am to nauseated.

    Everyone thank you!

    Our brains are good they tend to go for a dance when you least expect it!

    Like

    Comment by Toni Robison — October 5, 2011 @ 3:03 AM

    • Perhaps it’s time for a re-evaluation of your meds? Not just shunting you off the another doc.

      Although, it could be a separate issue. I’ve had colitis all my life. One bout of colitis and it’s instant weight loss.

      Also, this may be a long shot, but consider food allergies. Ultimately, that was my problem. My digestive system can’t process mammal enzymes.

      It that weird of what?

      So, no beef, lamb, pork, veal for me. If it walks on four legs, it’s out of the picture. (Although, I can eat emu, frogs legs, and other oddities.)

      Like

      Comment by Johnson — October 5, 2011 @ 3:57 PM

  66. Hi Jennifer, Toni,and Phylis

    Toni, never throw out your meds without talking to your doc. You will just cause yourself more problems. Cut down on them slowly, but only your doc will know which ones you should cut back on. Alcohol will only increase your seizures.

    Jennifer, You did not hurt my feelings. We need to be honest with each other. After all, we are family. At least I consider us to be a family.

    I have been off the internet for a long time now. I have missed out on a lot.

    Phylis, I have an electronic air cleaner to keep my allergies at bay. I also have 4 Ionic Pro’s small air cleaners throughout the house.

    HUGS,

    Like

    Comment by Ruth Brown — October 5, 2011 @ 6:15 AM

    • Ruth,

      Thanks for your message…don’t drink alcohol! Drank medication like the doc told me but my system wants to throw it up. I am not a happy camper! My husband wants me to go to another Epileptologist. I just want to feel better.

      Like

      Comment by Toni Robison — October 5, 2011 @ 12:28 PM

    • me too. Ruth, I love all of you too. Hugs.

      Like

      Comment by jennifer schnegg — October 5, 2011 @ 4:38 PM

  67. why is it that, if I have a longer complex seiz, my mind aoutomaticly think, that I need food? I have been tested and show now low blood sugar. Maybe its only occationatly, that I have low blood sugar. Any other answer, why I automaticly think about food?

    Like

    Comment by jennifer schnegg — October 5, 2011 @ 4:36 PM

    • I meant to say that I was tested, but show “no” low blood sugar.

      Like

      Comment by jennifer schnegg — October 5, 2011 @ 5:12 PM

  68. My friend who is a nurse is on the same diet and she tests her blood sugar thru out the day and notes it is high early in the morning. Her blood sugar has been high. IN the mid morning it is normal. SHe drinks a lot of her diet it was the change of her diet. She feels healthier and more energetic.

    She likes the diet.

    Like

    Comment by Toni Robison — October 5, 2011 @ 5:44 PM

    • which diet is that? The no gluten diet, and no milk, processed foods, no beans, cafein, corn? The GARD diet? I dont like it. Im not doing it to loose weight. I have no support from others that are on it too.

      Like

      Comment by jennifer schnegg — October 6, 2011 @ 1:25 AM

  69. My friend is on the same diet plan and her blood sugar varies thru out the day. She is a nurse and found her diabetes is under control but at times the blood sugar is high first thing in the morning but in the mid morning it is normal and the rest of the day.

    My friend has lost weight too. She likes that! You do not need to lose weight!!!

    I have lost my appetite do to medication. I eat yogurt and jello !!! Yum, Yum!

    So Happy Together!!!

    Like

    Comment by Toni Robison — October 5, 2011 @ 7:39 PM

  70. I had many complex seiz today.
    im frustrated. I hate them. Im taking my previous boyfriend to court. I hate it. I hate my seiz, that they come when least wanted. They keep me from driving, I hate not having friends my age. All are my parent’s age or older.

    Like

    Comment by jennifer schnegg — October 11, 2011 @ 3:39 AM

  71. he is harrassing me.
    am I ever going to have a decent one, or ever get married, or have children. Most my age are married, devorced, or gay, or crazy.

    Im just down right now. My friend Reem isnt talking to me anymore. I dont understand why. How else am I going to meet decent guys? I apparently pick the wrong ones. Online dating doesnt work.

    Im angry. Talk to me someone.

    Like

    Comment by jennifer schnegg — October 11, 2011 @ 3:45 AM

    • Jennifer, you will find someone when you least expect it.

      I decided to focus on life and work and all of a sudden I met Arthur.

      It’s not when you’re looking. You give a kind of desperate air about you (in general). You don’t see it, but they do.

      Try to relax and live your life. Maybe engage in church activities?

      Like

      Comment by Johnson — October 11, 2011 @ 2:18 PM

      • Im engaging all I can in the church I can. I Also go swing dancing 2x mo. I volunteer at hospice flea market 2x wk, (we raise money for the homes of the terminally ill). I also volunteer at the hospital, x wk. Take music lesson 1x wk. Play at the coffee shop with others from my string studio 1x mo. Go to book store 1x mo or so. Im now enjoying life, its just right now im sad.

        Like

        Comment by jennifer schnegg — October 11, 2011 @ 2:47 PM

      • I accomplished nothing yesterday. I usually go volunteer today, but the woman I ride with isnt going today. So now im stuck at home. Its raining today.

        Like

        Comment by jennifer — October 11, 2011 @ 3:12 PM

      • I dont mean to sound desperate. Im just sad, thats all.

        Like

        Comment by jennifer — October 11, 2011 @ 3:13 PM

  72. Maybe im sad because, I now have to go back to court monday. Also, because I used to love this guy im taking to court. I realized he was possessive, so then I broke up with him. He wouldnt leave me alone, so now im taking him to court.

    Like

    Comment by jennifer — October 11, 2011 @ 3:07 PM

  73. Jennifer, I am sorry that You are having a rough time.

    Like

    Comment by Ruth Brown — October 19, 2011 @ 4:32 PM

  74. Im ok now. Court is over, and he is ordered to stay away from me, or he will be arrested.

    My friend Christine, was in perfect mental health, she is 94 yrs old, now after 2 mo. or so, she shows signs of having had mini strokes.

    She had fallen and broken her hip, unfortunately had a reaction to a pain killer, that has set her back many weeks of physical therapy.

    I visit her every sunday after church. When I visited her last week, she was as if she was frustrated about something. She had hardley eaten her lunch. She was playing with her silverware, moving them around on her plate.

    She was more quiet than she would usually be. Her memory was not half as good as it had been, when she had been going to my church. There is a big difference between now and 3 mo. ago.

    I hope she wont forget who I am. It hurts so much. She did make a huge progress with her physical therapy.. She walked from her lunch table to her room, with a walker and a little arm support, of course.

    I dont like when a nurse from the rehability center is cold in nature to some or all the residents there. It makes me so mad.

    Tomorow is volunteer day at the hospital. Yesterday, I volunteered at the grand oaks center, next to the hospital. We made and stuffed some cloth sock dolls and sewed clown costumes on them. They are part of the hospital here. The little clowns are for children that have a hard time with medical procedures done at the hospital, we give them a clown doll.

    It was nice.

    Like

    Comment by jennifer — October 19, 2011 @ 10:51 PM

  75. I miss my family. Where have you gone?

    I miss the sharing and caring, jokes and frustrations, help and heartfelt wisdom.

    Where are you?

    Like

    Comment by Phylis Feiner Johnson — November 3, 2011 @ 9:59 PM

  76. Tuesday Arthur had a MRI on his head. They’ve called him back for Thursday under the diagnosis of An Ischemic Stroke. He’ll have an MRI at the base of his skull.

    I’m scared.

    Like

    Comment by Phylis Feiner Johnson — November 6, 2011 @ 3:03 PM

    • Hi, what is an ischemic stroke? I’ll be praying everything will be ok.

      Like

      Comment by jennifer — November 6, 2011 @ 7:23 PM

  77. Transcient Ischemic attacks or ischmic attacks or mini-strokes that Neurologists and cardiologists look into. They are short lasting seconds to a period of time but the patient recovers. The Neurologists tries to find out what causes the strokes, sometimes it is blood pressure, sometimes it is blood vessels, very similar to a regular stroke but the doctors want to prevent a large stroke from happening. I have done several studies w/ patients.

    Like

    Comment by Toni Robison — November 6, 2011 @ 9:02 PM

    • Thanks Toni. The thing is if it was an ischemic stroke, he’s doesn’t remember it ever happening
      …no dizziness, loss of consciousness…etc.

      But he will NOT go on Coumadin or Wayfarin. First of all, they’re (literally) rat poison, second of all, he doesn’t believe in them. (Mr. Alternative Health here!)

      So, he’ll take the appropriate supplements and work out.

      And I’ll keep my fingers crossed.

      They’re’s still a chance it could be a calcium, blockage or tumor (terrific) since he hasn’t had the 2nd MRI of the base of his skull yet.

      But whatever it is, it’s not going to help his neuropathy which keeps him in constant pain (from butt to toes) and really limits activities.

      Sigh.

      Like

      Comment by Phylis Feiner Johnson — November 6, 2011 @ 9:12 PM

  78. Hi Phylis, why didn’t you tell me. I am so sorry that you and Arthur are going through such a tough time.

    Please keep in touch with me. I am sorry that I have not kept in touch with you.

    I am a diabetic, so I understand Arthur’s point of view. Coumadin and Wayfarin can cause bleeding inside a person. If he ever has to have an operation of any kind, he could bleed to death.

    I myself, would never have those two drugs because they can cause a person to bleed to death. They cause the rats.to bleed to death.

    Please keep in touch with me. I will be keeping in touch with you. I am so very sorry.

    HUGS and lots of love, Ruth

    Like

    Comment by Ruth Brown — November 28, 2011 @ 12:09 PM

  79. It turned out that it wasn’t an ischemic stroke, I guess it’s just an “undefined” mass.

    I agree whole-heartedly about the coumadin/wayfarin.

    But the neuropathy continues.

    Miss you mightily, but PLEASE don’t feel guilty in any way!

    Like

    Comment by Phylis Feiner Johnson — November 28, 2011 @ 12:58 PM

  80. Phylis,

    He only gives us what we can handle!

    You are a wonderful, strong and loving person inside and out!

    I was told that when I was young and now that I have lived and raised a family, a dealt w/ many things in life I believe it!

    My computer has been on the blitz and I have not read your messages. There is a Epilepsy Conference for the medical field in Baltimore MD starting this week. I am going to sneak into it and say hi to friends! If you will be there tell me and I will look for you!

    Like

    Comment by Toni Robison — November 29, 2011 @ 7:32 PM

  81. I have not been on the internet, as much. I am having trouble concentrating because of my Alzheimer’s.

    That is why you have not seen much of me.

    I care for everyone. My memory is getting worse.

    Like

    Comment by Ruth Brown — December 28, 2011 @ 6:28 PM

  82. Then you do not min,d if I cannot come on the internet as often as I used to.

    Like

    Comment by Ruth Brown — December 28, 2011 @ 11:30 PM

  83. Hi Everyone,

    I did not get any replies from last time, except for Phylis. Phylis it is easier to talk to you here. Maybe others are reading it. I hope so!!

    My AD is getting worse. I say things that I do not mean to say. I have at my meetings. It does not come out right. My friends tell me that they appreciate my comments. They know that I have AD. I tell them what I meant to say. I will have to write down my comments from now on. Or, I will not comment at all. I will listen to others comment.

    My friends try to make me feel better. Apparently, I am still “in the closet” here. Otherwise, the others would talk to me. That way I could educate them.

    Or at least, they would know what I am going through. That is part of the education process.

    Love, Ruth

    Like

    Comment by Ruth Brown — January 10, 2012 @ 6:44 AM

    • Hi Ruth, Sorry to hear about your difficulty with the alzheimers. I have been very busy with my volunteering. Yes, we would love to learn more about it. I understand quite well what you mean to say, when you had spoken these last messages on here. Take care.

      Like

      Comment by jennifer — January 10, 2012 @ 6:18 PM

  84. Ruth, I agree with you one point…people here are more attuned to epilepsy and don’t necessarily talk or know about Alzheimer’s.

    But please, don’t be self conscious about what you are saying. And PLEASE, don’t stop talking!

    Like

    Comment by Phylis Feiner Johnson — January 10, 2012 @ 2:55 PM

  85. Hi Jennifer and Phylis,

    My epilepsy is under control and so is my diabetes. it is my AD that is not under control.

    That is why I have been talking about AD instead of epilepsy.

    Phylis, if you only want me to talk about epilepsy here, I will. AD comes from the brain too and can affect my epilepsy.

    Caregiver’s main problem is when it is time to put a person in a retirement home. If there are no legal papers made before the person has AD, then the caregiver has to see an attorney and have a hearing in court. Once I was diagnosed I am no longer able to make my own decisions or to make out my own legal papers.

    The other problem is that the caregiver does not know what the wishes of the person are with AD.

    I made out my legal papers years ago before I was diagnosed. My wishes are stated and my husband makes the decisions for me when I am not able to. He knows exactly what I want. He is my Health Care Agent on my Advance Directive. It is quite legal.

    That is where it is still “in the closet.” At the early stages of AD, a person is able to make their own decisions. Yet I am not allowed too.I have all ready discussed it with my husband and I have told him that when he can no longer take care of me, then he can put me in a retirement home.

    I have the link to the legal matters in my email box. I will add it in. Everyone should have an Advance Directive, naming the person they wish to be their Health Care Agent. Their wishes included as well.

    We have epilepsy. What if some day we go into a coma. Do we have the legal papers naming someone to make decisions for us, when we cannot. With epilepsy we are considered compenet to make our wishes known.

    Like

    Comment by Ruth Brown — January 11, 2012 @ 7:00 PM

    • Ruth,
      I worked in Dementia research at UCLA before my seizures got the best of me. Then I started having children and now live has changed. Memory and recall is a tangled web. Dr. Leuchter at UCLA and many other Dr.s and researachers stress. Cause of the dementia, then stimulation, medication, nutrition. Seizure medication is a tangled web.

      Notes are used by doctors, seizure patients all of us do to forgetfulness! You are a great person!

      The brain is an interesting study and is never boring! Have a wonderful new year everyone!

      Like

      Comment by Toni — January 12, 2012 @ 4:32 AM

    • Hi Ruth, my epilepsy isnt in control. What meds are you on? Maybe I havent tried the med combo.

      Like

      Comment by jennifer — January 13, 2012 @ 4:41 PM

  86. Here is the link:

    http://ahaf.org/alzheimers/livingwith/legalmatters.html

    Do you have you legal papers ready for when you cannot speak for yourself? You can do it for free, if you have. If you have not then the person who has to make the decisions will have to go to an attorney and then have a hearing.

    Like

    Comment by Ruth Brown — January 11, 2012 @ 7:19 PM

  87. EVERYONE should have an Advance Directive. No matter their age, physical condition, mental state, etc.

    It’s like a living will for when you’re alive!

    Like

    Comment by Phylis Feiner Johnson — January 11, 2012 @ 8:42 PM

  88. Hi Toni,

    You are so right!! The brain is so complicated. That then mixed with our medicines makes for a real mess in our brains. I do not live to far from UCLA. It and UCSF are two of the best hospitals in the country. I will ask my neurologist about being seen in one of the hospitals.

    I have had dementia for years. Last October, my brain changed. It got more complicated. I started doing and saying things that I would not normally do.

    I asked my neurologist for the 3 tests for AD to see if I had it. It was mainly found in the blood workup that they do and the MRI for short term memory loss. It has changed from dementia to AD. I am doing and saying things that a person would not normally say or do.

    Thank you for the compliment. I am not down on myself. I always think positive and face the challenges that I go through in life.

    Like

    Comment by Ruth Brown — January 12, 2012 @ 9:36 AM

  89. My epileptologist apointmenr is jan 24, and I dont know what other possabilities there are, as treatment goes. I tried all meds, the GARD diet, and the vagus nerve stimulator. None has helped. Has anyone had success with other diets, or the best drug combination, that I may not have done yet? I fell yesterday, and almost fell 2 times. I also had 2 complex, and simple partials. Im loosing hope of being seizure free. Thanks.

    Like

    Comment by jennifer — January 13, 2012 @ 4:38 PM

  90. Hi Jennifer,

    Everyone is different as to what works for them. I am on the Glycemic Index Diet. Keeping my diet, for my diabetes, keeps my seizures under control.

    I am on the same meals each day. I found out what diet works for me and I am not changing it. I know that sounds boring, but it works.

    My neurologist finally found out what medicines work for me after all of these years. I am on Keppra, Lamictal, clonazepam, primidone and Neurontin. That is considered to many pills but it works.

    I fall down, but I am using a walker. It is a good idea to use one if you feel like falling.

    I use grab bars, shower mat, shower chair. Most falls happen in the shower. My hubby also took out the shower glass door and put in curtains and a liner. It works just as good and you do not go through the glass if you fall.

    I hope this helps.

    Like

    Comment by Ruth Brown — January 13, 2012 @ 5:37 PM

    • Ruth, I think your idea of CONSISTENCY is a good one.

      Like

      Comment by Phylis Feiner Johnson — January 13, 2012 @ 8:41 PM

    • Im bad about not keeping a seizure diary/ food diary. I guess I,ve just accepted the fact there hasnt been hope yet, otherwise I would be doing it. Maybe I should try the Glycemic index, or maybe even the adtkins, though it sounds hard to do, the adtkins. I will discuss it with my Dr. Do you have any sugestions on good books to read up on this diet you are doing? Thanks for the tips Ruth.

      Like

      Comment by jennifer — January 14, 2012 @ 2:02 AM

  91. Try this Jennifer: Dr. Atkins’ Quick and Easy New Diet Cookbook [Paperback]

    http://www.amazon.com/Atkins-Quick-Easy-Diet-Cookbook/dp/0684837013/ref=sr_1_2?s=books&ie=UTF8&qid=1326549501&sr=1-2

    Like

    Comment by Phylis Feiner Johnson — January 14, 2012 @ 2:30 PM

    • im sooo.. down t hese last few days. Cant wait for disability responce, if I will get disability back..

      Like

      Comment by jennifer — January 17, 2012 @ 11:43 PM

  92. I have something to talk about. I raised 250 $ for the epilepsy foundation of NC walk tomorow.

    Like

    Comment by jennifer — March 31, 2012 @ 12:31 AM

  93. That is fantastic!

    Like

    Comment by toni — April 18, 2012 @ 3:56 AM

  94. gosh, its not fair that I have epilepsy. It seems my family is ashamed of me. A sis or daughter that has seiz. We will leave her home when we go shopping or meet younger sis. My younger sis is moving to Boston tomorow. Im already stressing out over not seeing her again and probably 1x yr. , or thinking that I wont be a normal aunt, without assistance to hold her baby, when she does get pregnant. Its as if people think, “what if she has a seiz?” Will she want me to visit? How will I get there, with out mother or father following me around. They didnt even want me to fly to Germany with them. Noone wants me to fly with them. It is too stressfull for me to go alone.

    I havent wanted to go to bed the last week, and am just overeating like crazy.

    Its not fair. Most of my friends are older, my parents age and up.

    On a train trip in Washington, I was so stressed out, I had 1 complex seiz after another on the train.

    What am I going to do?

    Has anyone else felt like this?

    Like

    Comment by jennifer — May 14, 2012 @ 6:59 PM

  95. Yup. Yours truly. The difference is that I didn’t have to worry about anybody leaving, because everyone was “gone.” 😉

    As for the travel, you have to find a travel companion. Literally. A friend, sister or whomever, and GO!

    You can’t cave into the embarrassment of your family. THAT’S THEIR PROBLEM, NOT YOURS!

    As for the train, take an anti-anxiety pill.

    And as far as being an auntie, you can always play with the baby on the floor. (That’s where they play anyway.) And I’m sure you would be a wonderful auntie because you’re so compassionate and caring.

    Jennifer, please don’t let this set you back. I know it’s depressing and probably makes you feel like crap, but there are plenty of things you are good at. Do THEM and build up your confidence.

    I probably have more faith in you than YOU do!

    Like

    Comment by Phylis Feiner Johnson — May 14, 2012 @ 7:53 PM

    • I may some good news. I will be meeting up with “paws-with-a-cause” on friday, about possibly qualifying for a seiz allert dog. Wish me luck.

      Like

      Comment by jennifer — July 9, 2012 @ 3:38 PM


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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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