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January 5th, 2013 #NChat

01/06/13

  08:28:00 am, by The Dreamer   , 9134 words  
Categories: mSpew

January 5th, 2013 #NChat

  • stridesagainstN Q3. What can we do in 2013 to grow and stregnthen the #narcolepsy community? #Nchat -4:25 PM Jan 5th, 2013
  • TheRealMikeHunt @NarcolepsyNews Thx for spreading the good word #Nchat -4:25 PM Jan 5th, 2013
  • stinacristina “@NarcolepsyNews: I hope to bring you news once in a while 2/3 times a week max #Nchat ” -4:25 PM Jan 5th, 2013
  • stridesagainstN Let me know if I can help in any way! RT @NarcolepsyNews: I hope to bring you news once in a while 2/3 times a week max#Nchat #Nchat -4:25 PM Jan 5th, 2013
  • lauramariee19 A2. To not let "but I have narcolepsy" become a regular excuse to avoid trying new things or accomplishing hard tasks. #nchat -4:25 PM Jan 5th, 2013
  • wehaveourhopes @TheRealMikeHunt A2. Keeping it busy. #nchat And attending support groups with the hubby. -4:26 PM Jan 5th, 2013
  • MaireadLawless #nchat I am Mum to an 8 year old boy with N and subtle C since he was 6. His N was triggered by Swine Flu Vaccine. Live in Ireland -4:26 PM Jan 5th, 2013
  • TheRealMikeHunt @MiaRaven Testify sister #Nchat -4:26 PM Jan 5th, 2013
  • jenniewakefield @stinacristina my naps can be up 6 hours sometimes #nchat -4:26 PM Jan 5th, 2013
  • mitdoc RT @stridesagainstN: Did you see my post about @meggbphillips benefit concert for Narcolepsy Network? http://t.co/fst7Z4rm #Nchat -4:26 PM Jan 5th, 2013
  • convergecollide A3: Keep up the monthly #nchat! I really love how it feels like I'm getting to "know" y'all a little better every month :) #nchat -4:26 PM Jan 5th, 2013
  • TheRealMikeHunt @mavericksmeow Good to know #Nchat -4:26 PM Jan 5th, 2013
  • MaireadLawless RT @NarcolepsyNews: It is #Nchat time ! Use #Nchat in your tweet to join -4:26 PM Jan 5th, 2013
  • stinacristina “@jenniewakefield: @stinacristina my naps can be up 6 hours sometimes #nchat” So it's not just me!!!!! #nchat -4:26 PM Jan 5th, 2013
  • mavericksmeow We need to raise awareness. I still haven't met someone with N in person. People still look at me funny when I tell them #nchat #Nchat -4:26 PM Jan 5th, 2013
  • LawrenceChen A2 guess I should work on getting my sleeping habits back, its bed time when I'm sleepy enough doesn't work anymore. #nchat -4:27 PM Jan 5th, 2013
  • convergecollide @MaireadLawless hi and welcome! #nchat -4:27 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN @jenniewakefield you guys could never hangout with me then #Nchat #ithinkimfunny -4:27 PM Jan 5th, 2013
  • stridesagainstN A3. Help #PWN in other countries host chats on their time. Also want to try Skype or G+ hangout. Help organize in-person groups, too. #Nchat -4:27 PM Jan 5th, 2013
  • convergecollide A3: I also think we need to find someone really really rich to send us all on a vacation together :) #nchat -4:27 PM Jan 5th, 2013
  • meggbphillips Q3: Stay in touch w each other through social media or w/e. I find that I can relate to so many PWN even on things unrelated to N. #nchat -4:27 PM Jan 5th, 2013
  • stinacristina RT @convergecollide: A3: I also think we need to find someone really really rich to send us all on a vacation together :) #nchat -4:28 PM Jan 5th, 2013
  • TheRealMikeHunt RT @NarcolepsyNews: I hope to bring you news once in a while 2/3 times a week max #Nchat -4:28 PM Jan 5th, 2013
  • wehaveourhopes RT @meggbphillips: Q2: I also want to be more positive and inspire others to be more positive, too. #nchat -4:28 PM Jan 5th, 2013
  • mitdoc A3. I think education of both the public and medical community as to #Narcolepsy and #Cataplexy is critical. #Nchat -4:28 PM Jan 5th, 2013
  • TheRealMikeHunt RT @wehaveourhopes: @TheRealMikeHunt A2. Keeping it busy. #nchat And attending support groups with the hubby. -4:28 PM Jan 5th, 2013
  • MiaRaven #NChat @stinacristina @jenniewakefield I thought 6 hour naps were normal. &#59;) -4:28 PM Jan 5th, 2013
  • convergecollide Speaking of meeting other ppl w N in person, if anyone is ever in/near Austin I'd love to meet up! #nchat -4:29 PM Jan 5th, 2013
  • TheRealMikeHunt @MaireadLawless Welcome to the group #Nchat -4:29 PM Jan 5th, 2013
  • LawrenceChen A3: was thinking I never did get back to DSS director after I got Dx'd, perhaps if he knew it might get a support group going. #nchat -4:29 PM Jan 5th, 2013
  • TheRealMikeHunt RT @convergecollide: A3: Keep up the monthly #nchat! I really love how it feels like I'm getting to "know" y'all a little better every month :) #nchat -4:29 PM Jan 5th, 2013
  • stridesagainstN A3. I want to engage more school nurses to teach them about #narcolepsy and #cataplexy. It was baffling how little they knew. #Nchat -4:30 PM Jan 5th, 2013
  • stinacristina A3: Start a blog? Not for monetary purposes, but for awareness. #Nchat -4:30 PM Jan 5th, 2013
  • MiaRaven #NChat A3 - I personally wish I could find a local support group for us. Haven't found one in my area & never met a PWN in real life. -4:30 PM Jan 5th, 2013
  • lauramariee19 A3. I'm thinking that someone should organize a Texas spring meetup :D #nchat -4:31 PM Jan 5th, 2013
  • LawrenceChen A3: Otherwise, I've been tossing the idea in my mind of whether I would try to get critical mass to have one appear in the community #nchat -4:31 PM Jan 5th, 2013
  • wehaveourhopes @stridesagainstN A3. Promote @RemRunner's book "Wide Awake & Dreaming", your blog, websites and find our own hashtags for Twitter. #nchat -4:31 PM Jan 5th, 2013
  • stinacristina @convergecollide Texas folks should meet in Austin sometime. #nchat -4:31 PM Jan 5th, 2013
  • mavericksmeow @stridesagainstN it baffles me how little GPs know! #nchat #Nchat -4:31 PM Jan 5th, 2013
  • jenniewakefield My GP shook my hand when I got diagnosed. In 45 years of practice he'd never met anyone with narcolepsy before #Nchat -4:31 PM Jan 5th, 2013
  • stridesagainstN Yes! RT @mitdoc: A3. I think education of both the public and medical community as to #Narcolepsy and #Cataplexy is critical. #Nchat -4:31 PM Jan 5th, 2013
  • stinacristina “@lauramariee19: A3. I'm thinking that someone should organize a Texas spring meetup :D #nchat” Austin! #nchat -4:31 PM Jan 5th, 2013
  • TheRealMikeHunt A3. @catthoma and I are building a #narcolepsycommunity website so we don't have to wait a month to talk to y'all. #Nchat -4:31 PM Jan 5th, 2013
  • mitdoc @stridesagainstN very true. Unfortunately, you can't diagnose #narcolepsy if you don't think about it. #Nchat -4:32 PM Jan 5th, 2013
  • LawrenceChen A3: yeah...keep up with these twitter chats.... :) #nchat -4:32 PM Jan 5th, 2013
  • stridesagainstN RT @jenniewakefield: My GP shook my hand when I got diagnosed. In 45 years of practice hed never met anyone with narcolepsy before #Nchat -4:32 PM Jan 5th, 2013
  • Sarah_hosey RT @stinacristina: I think I'm usually asleep when the #Nchat happens. Ha. -4:32 PM Jan 5th, 2013
  • TheRealMikeHunt A3. Its going to be different, but we it will be ours and that's all that matters. #Nchat -4:32 PM Jan 5th, 2013
  • convergecollide @TheRealMikeHunt @catthoma LOVE THIS. I hope I will eventually have time to contribute! #nchat -4:32 PM Jan 5th, 2013
  • mavericksmeow My sleep neuro said in a city of about a million he has only 40 diagnosed with narcolepsy #Nchat -4:32 PM Jan 5th, 2013
  • TheRealMikeHunt @mavericksmeow @stridesagainstN Its totally bs #Nchat -4:33 PM Jan 5th, 2013
  • NarcolepsyNews How can we do this? We need to raise awareness. I still haven't met someone with N in person. #Nchat (via @mavericksmeow) -4:33 PM Jan 5th, 2013
  • stridesagainstN A3. Would you guys like having bi-weekly chats instead of monthly? That is certainly an option. #Nchat -4:33 PM Jan 5th, 2013
  • TheRealMikeHunt @lauramariee19 you guys should really do that and keep us all posted. #Nchat -4:33 PM Jan 5th, 2013
  • mitdoc @jenniewakefield That's sad! With a rate of 1 in 2000, I am sure that in 45 years of practice he must have come across others. #Nchat -4:33 PM Jan 5th, 2013
  • jenniewakefield After 12 years of constant tiredness I did my own research and diagnosed myself Went to my GP who referred me for test to confirm it #Nchat -4:33 PM Jan 5th, 2013
  • convergecollide @stinacristina @lauramariee19 YES! I would totally be down for organizing an Austin meet up. #nchat -4:33 PM Jan 5th, 2013
  • stridesagainstN @mavericksmeow 40 is a great support group, if only you could find the others! #Nchat -4:34 PM Jan 5th, 2013
  • TheRealMikeHunt @convergecollide @catthoma me too! #Nchat -4:34 PM Jan 5th, 2013
  • convergecollide My new psychiatrist shocked me when she said she knew other ppl w/ N. Then she moved. :( #nchat -4:34 PM Jan 5th, 2013
  • TheRealMikeHunt RT @stridesagainstN: A3. Would you guys like having bi-weekly chats instead of monthly? That is certainly an option. #Nchat -4:34 PM Jan 5th, 2013
  • lauramariee19 RT @convergecollide: @stinacristina @lauramariee19 YES! I would totally be down for organizing an Austin meet up. #nchat -4:34 PM Jan 5th, 2013
  • mavericksmeow @mitdoc my doc also said he did testing in Moscow and they had nobody diagnosed. "Must be a lot of sleepy Russians" #Nchat -4:34 PM Jan 5th, 2013
  • TheRealMikeHunt @stridesagainstN maybe we're ready for this, I say lets do it. #Nchat -4:35 PM Jan 5th, 2013
  • LawrenceChen We're only a small city of just over 50,000, but seems everybody around here is studying sleep medicine now. #nchat -4:35 PM Jan 5th, 2013
  • convergecollide @jenniewakefield this is really similar to mine and others' stories I've heard. Really common that we do a lot of the work ourselves #nchat -4:35 PM Jan 5th, 2013
  • NarcolepsyNews @stinacristina #Nchat there is no money in orphan disease blogging ... -4:35 PM Jan 5th, 2013
  • mavericksmeow @stridesagainstN I see a sleep doc in another city 4 hours away :( he's one of the best around #Nchat -4:35 PM Jan 5th, 2013
  • TheRealMikeHunt @convergecollide super sad face #Nchat -4:35 PM Jan 5th, 2013
  • Sarah_hosey Cataplexy just started to be a problem for me. What did your doctors start you guys on when cataplexy first became a problem? #Nchat -4:36 PM Jan 5th, 2013
  • convergecollide @TheRealMikeHunt @stridesagainstN I like the bi-weekly idea in theory but I'm more likely to make the time when it's once/month #nchat -4:36 PM Jan 5th, 2013
  • LawrenceChen Found that there's been 3 new ones since I last check.... something like 10 now? #nchat -4:36 PM Jan 5th, 2013
  • lauramariee19 @stridesagainstN Yes! That way people wouldn't feel bad about missing one if they had to nap through it. Or, you know, be at work. #nchat -4:36 PM Jan 5th, 2013
  • jenniewakefield @mavericksmeow so they couldn't give me info on how narcolepsy and affects pregnancy, I had to stop taking my modafinil too #Nchat -4:36 PM Jan 5th, 2013
  • convergecollide I've never asked my sleep doc how many other patients with N they have, but now I'm curious... #nchat -4:37 PM Jan 5th, 2013
  • MiaRaven #Nchat A3 - We have to get this stigma of being "lazy" off of us. Even after all these yrs some ppl think I'm just 'lazy'. Even family! -4:37 PM Jan 5th, 2013
  • LawrenceChen Yet, the doc I see for N says he's the only one in town treating N patients....he was the only doc in Xyrem success when I had asked. #nchat -4:37 PM Jan 5th, 2013
  • mavericksmeow “@MaireadLawless: @NarcolepsyNews Ireland obv a much smaller place but we have managed to link with other PWN via Sleep Doctors.” #nchat -4:37 PM Jan 5th, 2013
  • convergecollide @TheRealMikeHunt Yeah, I was pretty bummed. But she's at a larger practice that I really like, so hopefully her replacement is good. #nchat -4:37 PM Jan 5th, 2013
  • wehaveourhopes @stridesagainstN A3. I guess a board would be better for certain topics. #nchat -4:37 PM Jan 5th, 2013
  • stinacristina RT @MiaRaven: #Nchat A3 - We have to get this stigma of being "lazy" off of us. Even after all these yrs some ppl think I'm just 'lazy'. Even family! -4:37 PM Jan 5th, 2013
  • TheRealMikeHunt @mavericksmeow @stridesagainstN That's just not fair. Time to move to the US #Nchat -4:37 PM Jan 5th, 2013
  • MaireadLawless @Sarah_hosey From research Xyrem (Sodium Oxybate) can be really effective. But also v expensive #nchat -4:37 PM Jan 5th, 2013
  • mitdoc @Sarah_hosey Xyrem seems to be the medication which is most helpful initially for cataplexy. Can take awhile to find right dose. #Nchat -4:37 PM Jan 5th, 2013
  • stridesagainstN I think there are a lot of #PWN willing to help educate; I think they just aren't sure where to start. Agree? Disagree? #Nchat -4:38 PM Jan 5th, 2013
  • jenniewakefield @Sarah_hosey my doctor said depression tablets are the best for narcolepsy #Nchat -4:38 PM Jan 5th, 2013
  • Sarah_hosey RT @mavericksmeow: My sleep neuro said in a city of about a million he has only 40 diagnosed with narcolepsy #Nchat -4:38 PM Jan 5th, 2013
  • convergecollide RT @MiaRaven: #Nchat A3 - We have to get this stigma of being "lazy" off of us. Even after all these yrs some ppl think I'm just 'lazy'. Even family! -4:38 PM Jan 5th, 2013
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