January #Nchat Recap: Watch Out 2013

Source: tumblr.com via Heather on Pinterest

 

January’s #NChat was nothing short of epic. For one, attendence was the largest we’ve seen so far with a healthy amount of “regulars” along with the addition of five new people to the chat. Participants were from the US, Germany, Ireland, and the UK. That’s right; #Nchat is going international!  Word is spreading, and that makes me smile! For two, I left the chat feeling inspired to help facilitate further change for the narcolepsy community, and I felt so honored to be in the presence of so many strong individuals who are willing and capable of doing so much. What I learned is that there are a lot of people with narcolepsy that want to get out and help educate the public, yet opportunities can seem difficult to find. Because we are spread out, it is easy to feel like raising awareness is too big of a job. We also need to focus on creating an updated set of materials to educate family and friends, and we must continue to focus on the education in health care as well as the general public.  (I think I read/heard somewhere that Narcolepsy Network is working on this.  I’m going to email them about it this week.)

To help people with narcolepsy find others around them, I’ve started a database. If you’d like to be in the database, please send me an email with your name, email address, and city/state at stridesagainstnarcolepsy@gmail.com.  We hope you will join us for the next #Nchat on February 2nd at 5pm Eastern!

Without further ado, here is a portion of the transcript.
Q1. Did you stay up until midnight to ring in the New Year? Do you have any traditions for January 1st?
“Stayed home, but I read a book until 1 a.m. Our Jan. 1st tradition is finishing the inventory in the family business.”
“We eat huge sweet bretzels on New Year’s traditionally. #nchat Also a luck thing.”
“I stayed up all night watching #Luther on #Netflix it was awesome, usually I go o with friends but stayed in w/ the gf this year.”
“I had intended to change smoke detector batteries on Jan 1, but discovered that I had apparently forgotten to buy them.”
“One of the first years I miss the countdown … And I wasn’t drinking either.. But I had worked all day before”
“I stayed up watching Batman with boyfriend and dad and went to bed shortly after Midnight.”
“We always have black-eyed peas on New Years for good luck. I think it’s a southern tradition”
“I sort of did – slept on the couch for a while but woke back up to ring in the new year!”

Q2. What goal(s) do you have for 2013? What can you do to improve your quality of life? #Nchat
“I guess I should work on getting my sleeping habits back, its bed time when I’m sleepy enough doesn’t work anymore”
“To not let “but I have narcolepsy” become a regular excuse to avoid trying new things or accomplishing hard tasks.”
“I need to stop staying up all night and sleeping all day, but the body does what it wants when unmedicated. Hard to control.”
“And, if I feel up to it…get other health issues dealt with that I’ve been ignoring while waiting to get sleep ones sorted.”
“To improve my quality of waking life, I want to limit naps to 20 minutes. My naps last way too long.”
“My goals are to get health insurance, get healthy, quit smoking, get meds and be happy with the person I’m. Oh and got to open mics”
“My goal is to somehow, someway, find affordable healthcare so I can finally get back on my meds after being off them for 8 yrs”
“Improving my eating habits… like better breakfasts, better suppers, stop skipping lunch.”
“I need to work on being kinder to myself when I have rough days. I carry to much quilt, and that needs to stop.”
“Go to sleep and wake up at consistent times. Also, eat healthier and exercise more. I just want to be healthier in general.”
“One of my goals for 2013 is 2 work toward getting myself on a regimen of drugs + sleep sched that feels like it’s working for me.”

Q3. What can we do to grow and stregnthen the #narcolepsy community?
“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!
“[Another PWN] and I are building a #narcolepsycommunity website so we don’t have to wait a month to talk to y’all.”
“I’m thinking that someone should organize a Texas spring meetup :D”
“Promote Julie Flygare’s book “Wide Awake & Dreaming”, your blog [stridesagainstnarcolepsy.com], websites and find our own hashtags for Twitter.”
“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.”
“Start a blog? Not for monetary purposes, but for awareness.”
“I want to engage more school nurses to teach them about #narcolepsy and #cataplexy. It was baffling how little they knew.”
“I think education of both the public and medical community as to #Narcolepsy and #Cataplexy is critical.”
“Help #PWN in other countries host chats on their time. Also want to try Skype or G+ hangout. Help organize in-person groups, too.”
“Keep up the monthly #nchat! I really love how it feels like I’m getting to “know” y’all a little better every month :)”

Q4. What resources do you have trouble locating? Research? Treatment? Other #PWN in your area? #Nchat
“Still haven’t found anybody in my area 2 talk 2, and I still have trouble finding treatment, but that is all gonna change in 2013.”
“It’s hard when people try to learn abt it but much of the info is about cataplexy & then I have to explain that mine is different”
“Finding a good sleep doc is hard, I used to travel 3+ hours to see the doc that DX’ed me after going thru 4 docs that couldn’t.”
“All of the above. But mainly medication that works & is not too expensive. I keep building a tolerance & increasing dose & so on.”
“I wish I had some easily readable resources to pass on to people I know that focus more heavily on narcolepsy than cataplexy”
“Other PWN’s in the area…. its the big thing I miss when I’m back from a conference…”
“Other local #PWN to meet with, for sure.”
“A big problem seems to be finding doctors who are up on the current treatments and are willing to prescribe.”

Q5. Are you interested in holding awareness events in your area? If you had someone to help, would this increase your willingness? #Nchat
“Not really… I’d be more interested in helping with a pwn group meetup than an awareness event.”
“I dont know how many people are in Arkansas, or close to here. But if we could find a location, Id love to help!”
“Yes, if I had the right someones with me…I’m sure I’d be out there doing all sorts of things”
“I am in theory, but I don’t really have time to organize something right now. But maybe in the future!”
“My fund raiser on March 9 is to raise awareness as well. Would love to work with anyone in the Roanoke, VA area.”
“Besides the concert my bf has organized, I want to do something else. Something more. But I don’t know what or how.”

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