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Nashville Support?


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#1 TvdS

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Posted 23 June 2011 - 09:28 AM

Does anyone know if there is still a narcolepsy support group in the Nashville area? Most information I've found is a couple of years old. Thanks in advance!



#2 Sleepy Head

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Posted 30 July 2011 - 09:52 PM

I have heard there was but I haven't figured out where or when. I would like to know because I would love to go and have others around me that are experiencing the same thing!
Someone mentioned it is close to downtown.

#3 Tonya

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Posted 17 December 2011 - 10:41 PM

I have heard there was but I haven't figured out where or when. I would like to know because I would love to go and have others around me that are experiencing the same thing!
Someone mentioned it is close to downtown.


Just wondering if you ever found a support group in Nashville for narcolepsy?


Thanks - Tonya

#4 Sleepy Head

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Posted 15 January 2012 - 09:29 PM

Sort of- it's through someone who worked at the St. Thomas Hospital Sleep Center. However, I don't know when or where they meet. If I find out any more info, I'll post again! :)

#5 blahblahkathy

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Posted 12 February 2012 - 11:20 PM

Please do post. I've been trying to find a Nashville support group for the past year, with no luck. I don't know anyone else who has narcolepsy:( It might be kinda fun/useful to meet up with some people who deal with the same stuff.

#6 songbird

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Posted 14 April 2012 - 03:22 PM

Has anybody heard anything about the Nashville group? Hell, at this point, I wouldn't mind just grabbing a sandwich somewhere downtown and having a gab session about all this.

Anybody heard about the exhibit at the Frist? Fairytales, Monsters, and the Genetic Imagination. I have a thing for fairy tales, especially monsters. (I chalk it up to remembering almost every dream I've ever had.) If anybody else would like to go, drop me a line!

#7 blahblahkathy

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Posted 30 June 2012 - 06:14 AM

Ok. Looks like we're not really getting anywhere with this. Would anyone like to just meet up somewhere and create our own little group?

#8 songbird

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Posted 07 July 2012 - 04:23 AM

Count me in...

#9 MsMolly

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Posted 02 August 2012 - 09:59 PM

Ok. Looks like we're not really getting anywhere with this. Would anyone like to just meet up somewhere and create our own little group?


If there is an active support group in the Nashville area, it must be a well-kept secret (lol). I've scoured the web but can't seem to find any recent info. i'm interested in meeting up somewhere, too. : )

#10 sleepysmom2

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Posted 07 August 2012 - 08:26 AM

My daughter,15, was recently diagnosed with narcolepsy and I would love to get together with others to better understand how I can help her. Please contact me if you would like to get together. I live in Hendersonville but am willing to drive to Nashville.

#11 sleepysmom2

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Posted 07 August 2012 - 08:28 AM

If there is an active support group in the Nashville area, it must be a well-kept secret (lol). I've scoured the web but can't seem to find any recent info. i'm interested in meeting up somewhere, too. : )



Would love to meet up with you. My daughter was recently diagnosed and I would like to find out about others experience with narcolepsy.

#12 TvdS

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Posted 08 August 2012 - 07:42 PM

If there is an active support group in the Nashville area, it must be a well-kept secret (lol). I've scoured the web but can't seem to find any recent info. i'm interested in meeting up somewhere, too. : )


MsMolly... thank you for the heads-up about all of the activity following my original question! Holy cow... I saw the date of my post and realized I haven't seen a single response. Wow, I've missed a lot. And that pretty much sums up my last year. About a month after I asked about a Nashville support group, I went on Xyrem. I went off of it about five months ago, that nasty poison. :-) But I digress...

It looks like there's enough interest to organize something. So let's do this... if you are interested in a gathering, follow up with a response to the following question:

What time is best for you?
- lunch time, after-hours, weekend, the best day of the week for you? My answer is any lunch-time hour during the work week is good, after-work/evenings are out for me because of middle school football. Go Knights! :-) And Saturday mornings are generally good for me.

Nashville seems to be a central meeting place... I saw Hendersonville on here, and I live in Rutherford County, but work in Nashville. I will be glad to find a place for us once we establish a day and time.

So-we're-on-the-same-page items: 1) what works best for the most folks will be how the first gathering date and time is decided, and 2) nothing is set in stone except the first gathering schedule.

Spread the word, and we'll take a stab at scheduling something based on what we have here this time next week.

Tracey :-)

#13 sleepysmom2

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Posted 08 August 2012 - 09:33 PM

Anyday works for me.Lunch time in Nashville is good or Saturday mornings work too. Nights are not good due to soccer. Look forward to hearing back from you!



Ronda

MsMolly... thank you for the heads-up about all of the activity following my original question! Holy cow... I saw the date of my post and realized I haven't seen a single response. Wow, I've missed a lot. And that pretty much sums up my last year. About a month after I asked about a Nashville support group, I went on Xyrem. I went off of it about five months ago, that nasty poison. :-) But I digress...

It looks like there's enough interest to organize something. So let's do this... if you are interested in a gathering, follow up with a response to the following question:

What time is best for you?
- lunch time, after-hours, weekend, the best day of the week for you? My answer is any lunch-time hour during the work week is good, after-work/evenings are out for me because of middle school football. Go Knights! :-) And Saturday mornings are generally good for me.

Nashville seems to be a central meeting place... I saw Hendersonville on here, and I live in Rutherford County, but work in Nashville. I will be glad to find a place for us once we establish a day and time.

So-we're-on-the-same-page items: 1) what works best for the most folks will be how the first gathering date and time is decided, and 2) nothing is set in stone except the first gathering schedule.

Spread the word, and we'll take a stab at scheduling something based on what we have here this time next week.

Tracey :-)



#14 Sleepy Head

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Posted 08 August 2012 - 09:59 PM

I am interested too! I do have info about the existing group. I met with them once. The people that attended have known each other for years but it was nice to talk to people "like" me. I've left a message for the leader to Find out her contact info preference. I'll post once I hear back from here. Thanks!!

#15 songbird

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Posted 09 August 2012 - 06:37 PM

I am interested too! I do have info about the existing group. I met with them once. The people that attended have known each other for years but it was nice to talk to people "like" me. I've left a message for the leader to Find out her contact info preference. I'll post once I hear back from here. Thanks!!


That would be awesome!

Unfortunately for me, lunch is a no-go. That's a nap time, and I work in Hermitage anyway. I'm free any day after 3:30pm except Thursday. What about Sunday, post-chuch-ish time? 1pm?

#16 MsMolly

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Posted 10 August 2012 - 02:47 PM

MsMolly... thank you for the heads-up about all of the activity following my original question! Holy cow... I saw the date of my post and realized I haven't seen a single response. Wow, I've missed a lot. And that pretty much sums up my last year. About a month after I asked about a Nashville support group, I went on Xyrem. I went off of it about five months ago, that nasty poison. :-) But I digress...

It looks like there's enough interest to organize something. So let's do this... if you are interested in a gathering, follow up with a response to the following question:

What time is best for you?
- lunch time, after-hours, weekend, the best day of the week for you? My answer is any lunch-time hour during the work week is good, after-work/evenings are out for me because of middle school football. Go Knights! :-) And Saturday mornings are generally good for me.

Nashville seems to be a central meeting place... I saw Hendersonville on here, and I live in Rutherford County, but work in Nashville. I will be glad to find a place for us once we establish a day and time.

So-we're-on-the-same-page items: 1) what works best for the most folks will be how the first gathering date and time is decided, and 2) nothing is set in stone except the first gathering schedule.

Spread the word, and we'll take a stab at scheduling something based on what we have here this time next week.

Tracey :-)

--

I'm ok with mornings, or evenings (after 6 or so) during the week; Weekends are generally open, too. I'd be coming from Franklin;
Hopefully we can come up with a place to meet that's fairly central for everyone(?).

#17 MsMolly

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Posted 10 August 2012 - 02:47 PM

That would be awesome!

Unfortunately for me, lunch is a no-go. That's a nap time, and I work in Hermitage anyway. I'm free any day after 3:30pm except Thursday. What about Sunday, post-chuch-ish time? 1pm?


--

Sunday afternoon works for me.... : )

#18 MsMolly

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Posted 17 August 2012 - 01:06 PM

That would be awesome!

Unfortunately for me, lunch is a no-go. That's a nap time, and I work in Hermitage anyway. I'm free any day after 3:30pm except Thursday. What about Sunday, post-chuch-ish time? 1pm?

--

Songbird, I can make this Sunday @ 1pm......anyone else? And any ideas for where to meet?

#19 MsMolly

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Posted 24 August 2012 - 02:59 PM

Hi Everyone-
This doesn't exactly fit the "support groups" topic, but it's only of interest to people in/around Nashville, so I figured this is a good place to post it:

I was perusing the web today, & found an announcement about an upcoming event for PWN's/ family/friends on Saturday, September 22, at St Thomas Hospital (Nashville). Dr. Emmanuel Mignot (Narcolepsy research doc) will be speaking on the latest research regarding Narcolepsy, & other details I can't remember.
I was excited to find it, as I probably won't be at the Narcolepsy Conference in Cleveland, and I'd really wanted to hear Dr. Mignot speak. (I haven't decided for sure about the Conference yet- but the thought of going & not knowing anyone else makes it seem like more of an ordeal than something enjoyable. : / )

Here is a link for more information:
https://www.wakeupna...ch-invite-2.jpg

#20 blahblahkathy

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Posted 26 August 2012 - 07:05 PM

--

Songbird, I can make this Sunday @ 1pm......anyone else? And any ideas for where to meet?



Hey MsMolly and Songbird. Just read your posts today (sorry haven't checked that e-mail account in a while.) And Sundays would work great for me too if you haven't already established a meeting time/place. If you have already established a time and place, please let me know when and where.
I'm excited!