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March 2nd, 2013 #NChat

03/02/13

  03:03:00 pm, by The Dreamer   , 6880 words  
Categories: mSpew

March 2nd, 2013 #NChat

  • catthoma Q2. What information would be useful to provide to those who support you in your diagnosis of #narcolepsy? #NChat -1:15 PM Mar 2nd, 2013
  • mama_beers #nchat I read the book too -1:15 PM Mar 2nd, 2013
  • TheRealMikeHunt @THEAdnAmA Well as long as he does what you need him to do #Nchat -1:15 PM Mar 2nd, 2013
  • stridesagainstN A1. By having a database of #PWN, I hope to facilitate creation of more in-person support groups. #Nchat -1:16 PM Mar 2nd, 2013
  • LawrenceChen All these hard questions.... #nchat -1:16 PM Mar 2nd, 2013
  • mama_beers @stridesagainstN will send you info. we are in hershey pa #nchat -1:17 PM Mar 2nd, 2013
  • catthoma @stridesagainstN I think that's wonderful! My doctor said she'll help support an event and I told her I don't know anyone here... #nchat -1:17 PM Mar 2nd, 2013
  • catthoma @LawrenceChen There's a purpose... stick with us... :) #nchat -1:17 PM Mar 2nd, 2013
  • TheRealMikeHunt A1. Everybody should read @RemRunner book. She is fighting for us in D.C. right now. She needs our support. #Nchat -1:17 PM Mar 2nd, 2013
  • TheRealMikeHunt @THEAdnAmA Yeah we always know! #Nchat -1:18 PM Mar 2nd, 2013
  • LawrenceChen A2 I wish I had support around here.... not sure would be useful #nchat -1:18 PM Mar 2nd, 2013
  • catthoma A2. There seems to be so much I want to have my family support me w/ but I have major problems communicating it. #nchat -1:18 PM Mar 2nd, 2013
  • TheRealMikeHunt @LawrenceChen These are the veru hard subjects of our lifes. #Nchat -1:18 PM Mar 2nd, 2013
  • ItsJustMeMia #nchat I'm Mia, 38, from Alabama, narcoleptic w/cataplexy, dx'ed 13 years ago. -1:19 PM Mar 2nd, 2013
  • stridesagainstN A2. No amount of resources are helpful if family members/supposed supporters do not have desire to be informed. THAT is my issue. #Nchat -1:19 PM Mar 2nd, 2013
  • convergecollide Q2 seems to have disappeared for me - can someone repeat it for me?#nchat -1:19 PM Mar 2nd, 2013
  • catthoma A2. I would love a tri-fold of 'how to support me' and just hand it to people who ask too many questions! haha! #nchat -1:19 PM Mar 2nd, 2013
  • sarahkbeau A2: My parents have always read up on it etc; although they don't understand it, they try. thats all that counts. #nchat #Nchat -1:19 PM Mar 2nd, 2013
  • THEAdnAmA A2.oops #NCHAT Understanding and patience. -1:19 PM Mar 2nd, 2013
  • stridesagainstN RT @catthoma: Q2. What information would be useful to provide to those who support you in your diagnosis of #narcolepsy? #Nchat -1:19 PM Mar 2nd, 2013
  • Jigglypuff2344 #Nchat I have no support, I have been told by my boss that I achieve 100% and that is not good enough cos others do more. -1:20 PM Mar 2nd, 2013
  • RemRunner #nchat Hi friends - I am running around like crazy to finish preparing for #sleepwalk2013 but wanted to say hello!! :-) -1:20 PM Mar 2nd, 2013
  • TheRealMikeHunt A2. Just a play by play of what a #PWN goes through everyday. A book that reaches patience and understanding. #Nchat -1:20 PM Mar 2nd, 2013
  • mama_beers #nchat it's upsetting for me cause I don't know what to do to help! Afraid he wastes precious moments! Don't want to be nagging mama -1:20 PM Mar 2nd, 2013
  • MaireadLawless @stridesagainstN Popping in! That seems to be an issue for many adult PWN. N is not understood as the debilitating condition it is #nchat -1:20 PM Mar 2nd, 2013
  • ItsJustMeMia #nchat A1: Hubby isn't here so I can't ask him, but he's an ardent researcher of my NwC and usually finds new things on the internet b4 I do -1:21 PM Mar 2nd, 2013
  • TheRealMikeHunt A2. Something to show everybody we love that we aren't lazy and we need help. #Nchat -1:21 PM Mar 2nd, 2013
  • catthoma @RemRunner Hey Julie! Thanks for popping over! So excited to hear all about it! #nchat -1:21 PM Mar 2nd, 2013
  • MaireadLawless @catthoma Hey - there's your new project - then you laminate it and give it to other PWN!!!! #nchat -1:22 PM Mar 2nd, 2013
  • convergecollide @RemRunner hi Julie! We were just talking about how helpful your book can be for explaining narcolepsy to our fam and friends. #nchat -1:22 PM Mar 2nd, 2013
  • TheRealMikeHunt A2. Or just a post-it note saying " LEAVE ME ALONE, ITS NAP TIME " #Nchat -1:22 PM Mar 2nd, 2013
  • catthoma @MaireadLawless @stridesagainstN I figured curiousity would get the best of you about today's #nchat! :) (good point btw) -1:22 PM Mar 2nd, 2013
  • stridesagainstN Hi, @RemRunner! Lots of talk about how much your book is helping others understand what it's like to be a #PWN!! :) #Nchat -1:22 PM Mar 2nd, 2013
  • mama_beers #nchat it's hard for me to find the line of lazy teenage son & pwn! -1:22 PM Mar 2nd, 2013
  • convergecollide A2:I have a hard time explaining how some days are better/worse than others. What I needed yesterday may not be what I need today. #nchat -1:23 PM Mar 2nd, 2013
  • catthoma A3. Overall awareness that people don't assume we are lazy or ask 'Really? Are you about to fall asleep?' #nchat -1:23 PM Mar 2nd, 2013
  • LawrenceChen A2 I'm trying to figure out what to tell my employer and such, and figure out the support/accommodations stuff. #nchat -1:23 PM Mar 2nd, 2013
  • TheRealMikeHunt @convergecollide Q2. What information would be useful to provide to those who support you in your diagnosis of #narcolepsy? #NChat -1:24 PM Mar 2nd, 2013
  • convergecollide @TheRealMikeHunt YES! And that if we start to doze off, they shouldn't act offended. It's not because we are bored or disinterested. #nchat -1:24 PM Mar 2nd, 2013
  • THEAdnAmA @TheRealMikeHunt Maybe we can all makea playbyplay of each of our days &see what we all have in common. make a booklet for @catthoma #NCHAT -1:24 PM Mar 2nd, 2013
  • mama_beers @TheRealMikeHunt #nchat that would be helpful, may mention that to my son -1:24 PM Mar 2nd, 2013
  • ItsJustMeMia #nchat A2: I keep meaning to get @RemRunner's book but there's so much going on in my life right now I don't have time to read it/pass 2 fam -1:24 PM Mar 2nd, 2013
  • stridesagainstN A2. @LawrenceChen brings up a very important point. We need more resources on our rights in the #ADA and how to ask for accommodation #Nchat -1:24 PM Mar 2nd, 2013
  • catthoma sorry last tweet was A2 not A3. I'm a dork... #nchat -1:24 PM Mar 2nd, 2013
  • TheRealMikeHunt @ItsJustMeMia that's a good hubby. #NChat -1:25 PM Mar 2nd, 2013
  • TheRealMikeHunt @MaireadLawless @catthoma Love it! #NChat -1:25 PM Mar 2nd, 2013
  • catthoma @LawrenceChen Amen to that. I wonder about the line of what to say at work since people make assumptions... #Nchat -1:25 PM Mar 2nd, 2013
  • LawrenceChen I'm bad....I have two copies of @RemRunner's book, and haven't read either of them yet. #nchat -1:26 PM Mar 2nd, 2013
  • TheRealMikeHunt @mama_beers YES! #NChat -1:26 PM Mar 2nd, 2013
  • mama_beers @stridesagainstN @LawrenceChen #nchat thats our prob right now. if son wants to disclose to college. i want to hes not too sure. -1:26 PM Mar 2nd, 2013
  • ItsJustMeMia @therealmikehunt My hubby is my biggest supporter. I don't know how I could live my life like I do without him. #nchat -1:27 PM Mar 2nd, 2013
  • TheRealMikeHunt Are we all ready for Q3? It's coming up in 60 seconds? #NChat -1:27 PM Mar 2nd, 2013
  • TheRealMikeHunt @LawrenceChen @RemRunner Its really good. #NChat -1:27 PM Mar 2nd, 2013
  • ItsJustMeMia #nchat A2: When you live in a "right to work" (aka fire you for any reason w/no recourse) state you have to be careful. I've experienced it. -1:28 PM Mar 2nd, 2013
  • catthoma @TheRealMikeHunt I am! Pick me! Pick me! #nchat -1:28 PM Mar 2nd, 2013
  • kathylovesmusic #nchat link to questions? -1:28 PM Mar 2nd, 2013
  • TheRealMikeHunt @ItsJustMeMia I find we are nothing without our partners in crime.... I mean sleep #NChat -1:28 PM Mar 2nd, 2013
  • TheRealMikeHunt @ItsJustMeMia Arizona is very much like that, and I did get fired for sleeping on the job. #NChat -1:29 PM Mar 2nd, 2013
  • TheRealMikeHunt @kathylovesmusic give me one sec #NChat -1:29 PM Mar 2nd, 2013
  • RemRunner @stridesagainstN @LawrenceChen #nchat my presentation (4 sleep docs) covers school accommodations, employment accommodations & driving laws -1:29 PM Mar 2nd, 2013
  • TheRealMikeHunt @kathylovesmusic Q1. What resources are currently available for those supporting #PWN? #NChat -1:29 PM Mar 2nd, 2013
  • LawrenceChen I used to have a link about a student with Narcolepsy...how she didn't disclose at first and almost flunked out, but then did... #nchat -1:29 PM Mar 2nd, 2013
  • TheRealMikeHunt @kathylovesmusic Q2. What information would be useful to provide to those who support you in your diagnosis of #narcolepsy? #NChat -1:29 PM Mar 2nd, 2013
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