mtc

NN's Support Group List

22 posts in this topic

Are there any members who live in the New Orleans area that would be interested in starting a support group?

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Are there any members who live in the New Orleans area that would be interested in starting a support group?

There must be someone that reads these posts that live in the new orleans area. I visited my neurologist the other day and she said she has diagnosed several people with narcolepsy. So where are Y'all?? :rolleyes: Even if you don't want to start a local support group (I know, I am actually too tired too). I would like to hear from you!

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Yes ME! Hi I'm a new member and just recently figured out how to sign in the message board.I live Uptown in New Orleans, born and raised in Metairie. Let me know if your still interested.

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Yes, who dat! I was born here also. Was dx'ed in Jan of '99.

Have checked in and out of this site since, but the local groups thing must be new.

My doc has only one other narcolepsy patient.

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Narcoleptics in NOLA, hello!

 

Looking for recommendations for a great sleep spec/neurologist to get sleep study.

 

-or how bout docs to avoid or docs that you wouldn't recommend?

 

Thanks-A.

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I've met one other N on NOLA, she actually was a waitress in a restaurent I frequented with my wife and that was mind-blowing!

I can recommend you DON'T go to Dr. Adams, Olejnizak, or Willensky.

Try Dr Layne, even though he's a pulmononologist, he's excellent for narcolepsy.

 

A support group might be interesting here!

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Thanks for the thumbs up & thumbs down dr referrals-cnlmustard. I just don't have $ for extra doc consults to find out for myself.

 

Support group -yes -the more the merrier! I love share a laugh with those who are going thru the same thing.  

 

I'm lucky to have a friend w/ N in NOLA,. Meeting another person with N was just like you said, mind blowing.  

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I'm in Denham Springs, b/t Baton Rouge & Hammond. I know one other person in my area... I would live to meet others & share stories. I booked my trip to ATL yesterday for the N conference in October.

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Perfect, I'm planning on attending the Conference also!

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I'm excited to see you local N folks going to the convention. I would love a meet-up to happen with SE Louisiana folks after the convention so those who went to Atlanta can share too. 

 

Despite how much I'm motivated to get some plans on paper, currently and for the near future, I just can't rely on myself to plan a N/IH get-together :\. But if I'm ever back to that level of functioning, I will arrange a meet-up in NOLA (@ a local coffee shop, of course) for SE Louisiana.     

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I initially thought meeting up in NOLA or somewhere close would be a great idea. But then I remembered there's no way I could drive to NOLA by myself.  I can't even make it to Hammond by myself... :(

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Dang, I had that thought in the back of my mind, that PWN wouldn't be able to get to NOLA if one had to drive here. I've had to stop driving too, and I want to support those who've made those difficult decisions 'bout driving safety. Shucks.

However, I'm happy for you to see you are going to the convention :) .

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Hi! I just am coming across this post. I was diagnosed with N last October so I'm still fairly new with learning how to live with N. I am from NOLA but am living in Baton Rouge with my fiancé. I know the previous posts are old but I've recently felt the need to try and find someone I could at least talk to about my N in my area! Anyone interested?? I don't know anyone near me with N =\

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There is a new support group based in Lake Charles, LA.  The SWLA Narcolepsy Support Group, aka: Sleepys in SWLA, will have their first meeting on January 10, 2015 from 10:00 AM til 12:00 PM.  The meeting will be held at the Sleep Disorder Center of SWLA, located at 4820 Lake Street, Lake Charles, LA 70605.  Meetings after January are scheduled to be held on the second Saturday of each month, at the same time and place. Find us on Facebook under "Sleepys in SWLA!"
 
:D 

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I guess I left the radar here for a while, but I'll never leave N.O.  My great nephew-in-law was just dx-ed with Narcolepsy, small world. I kept telling them for years, hey don't you think WE can tell?? But he doesn't call me to talk.

 

Read the latest from NN about the flu shot connection and take heed! My symptoms have been escalating each spring since I started getting them years back, and now I'm a basket case.

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Hope you are managing. Yr nephewin law,Hope he's getting the treatment he needs. Does the nephew live in NOLA?

NOLA has a great plue for this PWN/C bc it is a safe haven from scrunity when I need to BF to prop up my sleepy zombie walking body down the street. Someone in a stupor, or stumbling trying to walk, getting assistance to walk is something no one bats an eye at. Also if I can't keep my eyes open or slowly utter my words llike a drunk sloth, still locals are unfazed. Nothing out of the ordinary. I have gawked at in other more normal towns. Don't need to be anymore self-conscious than already am.

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Is there still no support group in new Orleans northshore area?

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Cubano, there's not even a southshore group, unless I don't know! Once I met a waitress at a restaurant I used to go to regular with my wife before they closed, that had narcolepsy. Wow, only person I ever met with N before my nephew-in-law! He's in Reserve. 

 

I tried Provigil for a while, but it stopped working after three months and I went back to Ritalin, been on it for fifteen years.

 

Slo.Mo., yeah you could BE an actual zombie here, no one would notice!! I was born here.

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Hey my fellow southern LA PWN's!

No support group in NOLA, north or south shore. Just support for a support group!

Transportation seems to be the problem to get a southern LA support group meet up going.

Besides us all being too sleepy.

CnlMustard,

How are doing? hope all's well for you and yr nephew in law.

Yes, zombies, real or narcoleptic, don't have worry getting noticed here. Really helpful as I adjust to my new normal.

Have an appt with Dr Layne for the 1st time this friday after being on a new patient waiting list for a few months. Any doc has got to be better than the last sleep doc I saw!

Maybe after getting a decent doc to treat my n/c, I can try and give a rounding up some sleepy folks for a PWN/IH meet-up and see if that gets the ball rolling toward a regular support group for southern la. I willing to try, I stink at the writing thing, very exhausting for my poor brain. Face to face forum would be better for me. But I still would wanna be called Slo.mo.a.go.go or Slo-mo. It fits better than my real name.

Oh rambling....tired, tout bonne nuit!

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Hi everyone!

I live in Metairie and wouldn't mind meeting up with other people with narcolepsy to talk.   

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