Sunday, August 16.
Please join us for our annual potluck picnic on
Sunday, August 16 from 4-7pm
@ Whetstone Park of Roses in Clintonville
Bring your family and friends. Bring a dish of your favorite food and/or
something to drink. Cups, plates, napkins, and eating utensils will be provided.
We always have a fun time chatting and eating and meeting new people so make
plans to come. We will also be doing the white elephant gift exchange again so
bring a wrapped gift to share in the fun.

Whetstone Park of Roses
3923 North High Street, Columbus, OH 43214, Tel: 614-645-3217 or call Columbus
Recreations & Parks, 614-645-3350.
DIRECTIONS: Whetstone Park is located in Clintonville off North High Street
behind the Whetstone Branch of the Columbus Metropolitan Library. From I-71,
exit on North Broadway, proceed East to High St., turn North on High Street,
proceed approximately 1.5 miles north to the Whetstone Park entrance located at
3901 N. High St. Enter at this location, follow the park entry road to the lower
parking lot. All parking is free; please use the lower lot adjacent to the
shelter house. We’ll be at the picnic tables near this lower parking lot. Just
look for signs that say SLEEP PICNIC and you’ll find us. You may even want to
take time to visit the 13-acre manicured gardens of 11,000 rose bushes of 350
varieties. Peak bloom is mid-June through mid-September.
________________________________________

'Sleep is a pervasive, universal, and fundamental behavior: it occupies a third
of our life;
it is present in every animal species where it has been studied; even partial
deprivation
  of sleep has serious consequences on cognition, mood, and health. All available
evidence indicates that sleep is “of the brain, by the brain, and for the
brain”. However, despite decades of intensive research, the mechanisms and
functions of sleep remain unclear.'
- quote from sleepconsciousness.org
________________________________________

WE ENCOURAGE OUR MEMBERS
to join the national organizations that address their individual concerns.
It’s an excellent way to keep up-to-date on recent developments in that field.
American Sleep Apnea Association  202-293-3650  www.apneasupport.org
Narcolepsy Network, Inc.  888-292-6522  www.narcolepsynetwork.org
Restless Legs Syndrome Foundation  507-287-6465  www.rls.org
National Fibromyalgia Association  714-921-0150  www.fmaware.org
Talk About Sleep www.talkaboutsleep.com

DONATIONS OF CPAP AND BIPAP MACHINES NEEDED
If you have a CPAP or BIPAP machine that you are no longer using, there are
patients in the Central Ohio Area who have no insurance and would benefit
greatly from the donation of your machine.  Riverside Methodist Hospital and
HomeReach/Homecare are asking for donations of these machines, which will then
be issued to Riverside patients who cannot afford to pay for them.  Income tax
donation forms are available for anyone who wishes to donate.  If you are
interested, please call Karen Hedden, social worker at Riverside Methodist
Hospital, 614-566-5018.
STEERING COMMITTEE VOLUNTEERS:
*  Ellen Haider is one of our founders and has narcolepsy.
	 614-459-0945 / E-mail:  ellenhaider@...
*  Laura Evert has narcolepsy. As her about N[ART].
	 614-784-8823 / E-mail: dreamiestgirlever@...
* Tanya Biesecker has sleep apnea.
	 614-262-7773
* Lynn Jones has narcolepsy and sleep apnea.
	 614-868-1104 / E-mail: lymjones@...
* Karen Hedden, social worker at OhioHealth Riverside Hospital Sleep Center.
614-566-5018 / E-mail: khedden@...

TO BE ADDED TO OR REMOVED FROM OUR US POSTAL MAILING LIST CONTACT Ellen Haider,
keeper of the mailing list, 614-459-0945, ellenhaider@...

TO BE ADDED TO OR REMOVED FROM OUR E-MAIL LIST THROUGH YAHOO GROUPS CONTACT 
http://health.groups.yahoo.com/group/centralohiosleepdisorders
___________________________________

Narcolepsy Research, your help needed. Researchers in several different
countries are making progress in learning more about the specifics of the
genetic component of narcolepsy. A Japanese researcher has been studying the
DQB1 gene. There are details about his findings at www.narclepsynetwork.org.
Other studies are proceeding on narcolepsy-cataplexy specifically. If you would
like to participate by sending a blood sample, call Mali Einen at 650-721-7550
for more information. More participants are needed in order to make sure the
findings are real.
___________________________________

Thanks to the Sleep Diagnostic Center at Riverside Methodist Hospital
for making the copies of this newsletter.

This mailing was made possible with the generous support of YOU,
the members of the Central Ohio Sleep Disorders Support Group.
Thank you everyone!

___________________________________________________________________

It's membership time... please send in your annual donation to help with our
mailing costs. Our wish list also includes postage stamps + avery address
labels.
See the form that follows.
___________________________________________________________________


Membership

Central Ohio Sleep Disorders Support Group Membership!
Our July quarterly mailing is the time we ask for your voluntary membership dues
of $10 or more to help pay for our mailing supplies and postage. We do want to
emphasize that no one will be excluded because of an inability to pay. We want
everyone to stay involved and informed. This will be an honors system based
collection of dues. Membership dues will be asked for each July with a reminder
in October, so please take the time now to send your annual membership dues
payable to Central Ohio Sleep Disorders Support Group
c/o Ellen Haider, 961 Farnham Road, Columbus, OH 43220. A membership form
follows. A special thank you to all those who contributed last year and/or
throughout the year. We also appreciate the personal notes, suggestions, and
ideas that you have sent in. Keep that mail coming! We can’t do it without
you! All information is optional and kept confidential.

Name/Organization:
................................................................................\
...............................
Address:
................................................................................\
................................................

Telephone: ....................................... E-mail:
.......................................................................
Website:
................................................................................\
................................................

Sleep disorder(s):
................................................................................\
..................................
Sleep physician: 
................................................................................\
...................................
Personal notes, suggestions, and ideas:

................................................................................\
..............................................................

................................................................................\
..............................................................
................................................................................\
..............................................................
[  ] Membership dues of $10 or $____ enclosed. '
payable to Central Ohio Sleep Disorders Support Group,
c/o Ellen Haider, 961 Farnham Road, Columbus, OH 43220

[  ] Please ADD me to your US postal mailing list.
[  ] Please DELETE me from your US postal mailing list. I will join your online
group to receive meeting announcements via email instead.
[  ] Please KEEP me on your US postal mailing list. I will join your online
group to receive meeting announcements but also want to receive postal mailings.

Meetings Announcements & News via E-mail by Joining Us Online
<http://health.groups.yahoo.com/group/centralohiosleepdisorders>
Get to know our members better and stay in touch between meetings by joining our
online YAHOO! group. If you would rather receive your meeting notices
exclusively via e-mail, let us know. Choosing to do this saves trees and lowers
our overall mailing costs. Both good things so sign up today.

although made for runners, hikers, marathoners, etc., i think this would be
great for us to have especially the interactive one with loads of info available
via phone or internet. what do you think?

ROAD ID demo video
http://www.roadid.com/common/learnmore_elite.aspx?GoBackURL=http%3a%2f%2fwww.roa\
did.com%2fcommon%2fid.aspx

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever.etsy.com

central ohio sleep disorders support group:
groups.yahoo.com/group/centralohiosleepdisorders

I'm going to do another sleep study as i have been having trouble keeping awake
during the day. i have had my bi-pap since Nov. 06. i'm also going to do a nap
study. i would like to know what did people do during the day when they were
there. at home i read and listen to the music station on tv. also i play games
on my puter. Any idess will be a big help. thank you. cindi

I do not want the entire group seeing these photos.Because some may recognize
me. Here's the link:
http://passiooate.zoomshare.com/files/photos.htm

Enjoy babe :)

Usually I watch tv while there.  They give you repeated naps.  You also can
read, but I was too tired.

What doctor prescribed your bipap from?  I need to get one, I couldn't stand the
cpap machine.

What is your diagnosis?  I have sleep apnea and chronic fatigue syndrome.

Scott
   ----- Original Message -----
   From: chevymalibu73
   To: centralohiosleepdisorders@yahoogroups.com
   Sent: Saturday, August 08, 2009 9:21 PM
   Subject: [central ohio sleep disorders] the nap study


     I'm going to do another sleep study as i have been having trouble keeping
awake during the day. i have had my bi-pap since Nov. 06. i'm also going to do a
nap study. i would like to know what did people do during the day when they were
there. at home i read and listen to the music station on tv. also i play games
on my puter. Any idess will be a big help. thank you. cindi





[Non-text portions of this message have been removed]

i WILL be at the jacksonville conference in october. not sure of the exact dates
just now. go to narcolpesynetwork.org for that. just happy to see people awake +
writing!

i will be bringing a new piece of artwork to the event that involves a pillow +
poetry. please, if you are so inclined, make some artwork or bring a writing
about how N affects you. it is so fun to share in this way i believe. we will
have a display table of some sort. i will be staying with glass artirst +
drummer + pwn pam, for those who remember her drumming workshop of years past.

also, bring something for the silent auction to help raise funds for conference
scholarships. this helps pwn get there who might otherwise not be able to come.

what else? our local support group is still meeting quarterly + my doctor,
timothy walter recently wrote an amazing book called 'rem illumination'. learn
more at capitolsleepmedicine.com. he even has an audio link there where he reads
a bit of the book. go see!

i hope these hard economic times are not too rough on you all. i have actually
found a little comfort in in as now my friends + people in general are almost as
poor as me. lots of potlucking + sharing + comiserating in larger numbers. more
bike riding + people in the parks. i feel less isolation + more community. you?

write. write!

...
laura j evert
university district of columbus, ohio usa
shop! dreamiestgirlever.etsy.com

N[ART]: narcolepsyart - founder + coordinator:
groups.yahoo.com/group/narcolepsyart
central ohio sleep disorders support group:
groups.yahoo.com/group/centralohiosleepdisorders


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

When does this group have it's meetings?  I would like to attend.  Did I already
miss the August one?

Scott


   ----- Original Message -----
   From: lje
   To: N list
   Cc: centralohiosleepdisorders@yahoogroups.com
   Sent: Monday, August 10, 2009 9:20 AM
   Subject: [central ohio sleep disorders] here's to waking the Nlist back up!


     i WILL be at the jacksonville conference in october. not sure of the exact
dates just now. go to narcolpesynetwork.org for that. just happy to see people
awake + writing!

   i will be bringing a new piece of artwork to the event that involves a pillow
+ poetry. please, if you are so inclined, make some artwork or bring a writing
about how N affects you. it is so fun to share in this way i believe. we will
have a display table of some sort. i will be staying with glass artirst +
drummer + pwn pam, for those who remember her drumming workshop of years past.

   also, bring something for the silent auction to help raise funds for
conference scholarships. this helps pwn get there who might otherwise not be
able to come.

   what else? our local support group is still meeting quarterly + my doctor,
timothy walter recently wrote an amazing book called 'rem illumination'. learn
more at capitolsleepmedicine.com. he even has an audio link there where he reads
a bit of the book. go see!

   i hope these hard economic times are not too rough on you all. i have actually
found a little comfort in in as now my friends + people in general are almost as
poor as me. lots of potlucking + sharing + comiserating in larger numbers. more
bike riding + people in the parks. i feel less isolation + more community. you?

   write. write!

   ...
   laura j evert
   university district of columbus, ohio usa
   shop! dreamiestgirlever.etsy.com

   N[ART]: narcolepsyart - founder + coordinator:
groups.yahoo.com/group/narcolepsyart
   central ohio sleep disorders support group:
groups.yahoo.com/group/centralohiosleepdisorders

   __________________________________________________
   Do You Yahoo!?
   Tired of spam? Yahoo! Mail has the best spam protection around
   http://mail.yahoo.com




[Non-text portions of this message have been removed]

The next meeting for sleep disorders will be in august the 3rd sunday is when
they ar ussually held at th elizabeth black well cneter at riverside .

--- On Tue, 8/11/09, appleheadq@... <appleheadq@...> wrote:


From: appleheadq@... <appleheadq@...>
Subject: Re: [central ohio sleep disorders] here's to waking the Nlist back up!
To: centralohiosleepdisorders@yahoogroups.com
Date: Tuesday, August 11, 2009, 7:27 AM


�



When does this group have it's meetings? I would like to attend. Did I already
miss the August one?

Scott

----- Original Message -----
From: lje
To: N list
Cc: centralohiosleepdis orders@yahoogrou ps.com
Sent: Monday, August 10, 2009 9:20 AM
Subject: [central ohio sleep disorders] here's to waking the Nlist back up!

i WILL be at the jacksonville conference in october. not sure of the exact dates
just now. go to narcolpesynetwork. org for that. just happy to see people awake
+ writing!

i will be bringing a new piece of artwork to the event that involves a pillow +
poetry. please, if you are so inclined, make some artwork or bring a writing
about how N affects you. it is so fun to share in this way i believe. we will
have a display table of some sort. i will be staying with glass artirst +
drummer + pwn pam, for those who remember her drumming workshop of years past.

also, bring something for the silent auction to help raise funds for conference
scholarships. this helps pwn get there who might otherwise not be able to come.

what else? our local support group is still meeting quarterly + my doctor,
timothy walter recently wrote an amazing book called 'rem illumination' . learn
more at capitolsleepmedicin e.com. he even has an audio link there where he
reads a bit of the book. go see!

i hope these hard economic times are not too rough on you all. i have actually
found a little comfort in in as now my friends + people in general are almost as
poor as me. lots of potlucking + sharing + comiserating in larger numbers. more
bike riding + people in the parks. i feel less isolation + more community. you?

write. write!

...
laura j evert
university district of columbus, ohio usa
shop! dreamiestgirlever. etsy.com

N[ART]: narcolepsyart - founder + coordinator: groups.yahoo. com/group/
narcolepsyart
central ohio sleep disorders support group: groups.yahoo. com/group/
centralohiosleep disorders

____________ _________ _________ _________ _________ __
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail. yahoo.com

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

Actually, Scott, we have our annual picnic coming up this Sunday, August 16�at
Whetstone Park from 4-7.� It's a potluck.� There's more information on our
website as part of our general meeting announcement for July--or I think there's
a posting on there somewhere just about our picnic.
�
Hope to see you there,
Ellen Haider
--- On Tue, 8/11/09, appleheadq@... <appleheadq@...> wrote:


From: appleheadq@... <appleheadq@...>
Subject: Re: [central ohio sleep disorders] here's to waking the Nlist back up!
To: centralohiosleepdisorders@yahoogroups.com
Date: Tuesday, August 11, 2009, 7:27 AM


�



When does this group have it's meetings? I would like to attend. Did I already
miss the August one?

Scott

----- Original Message -----
From: lje
To: N list
Cc: centralohiosleepdis orders@yahoogrou ps.com
Sent: Monday, August 10, 2009 9:20 AM
Subject: [central ohio sleep disorders] here's to waking the Nlist back up!

i WILL be at the jacksonville conference in october. not sure of the exact dates
just now. go to narcolpesynetwork. org for that. just happy to see people awake
+ writing!

i will be bringing a new piece of artwork to the event that involves a pillow +
poetry. please, if you are so inclined, make some artwork or bring a writing
about how N affects you. it is so fun to share in this way i believe. we will
have a display table of some sort. i will be staying with glass artirst +
drummer + pwn pam, for those who remember her drumming workshop of years past.

also, bring something for the silent auction to help raise funds for conference
scholarships. this helps pwn get there who might otherwise not be able to come.

what else? our local support group is still meeting quarterly + my doctor,
timothy walter recently wrote an amazing book called 'rem illumination' . learn
more at capitolsleepmedicin e.com. he even has an audio link there where he
reads a bit of the book. go see!

i hope these hard economic times are not too rough on you all. i have actually
found a little comfort in in as now my friends + people in general are almost as
poor as me. lots of potlucking + sharing + comiserating in larger numbers. more
bike riding + people in the parks. i feel less isolation + more community. you?

write. write!

...
laura j evert
university district of columbus, ohio usa
shop! dreamiestgirlever. etsy.com

N[ART]: narcolepsyart - founder + coordinator: groups.yahoo. com/group/
narcolepsyart
central ohio sleep disorders support group: groups.yahoo. com/group/
centralohiosleep disorders

____________ _________ _________ _________ _________ __
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail. yahoo.com

[Non-text portions of this message have been removed]



















[Non-text portions of this message have been removed]

CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP in columbus, ohio

Don't miss our Annual Picnic in August! See you there!

Sunday, August 16.
Please join us for our annual potluck picnic on
Sunday, August 16 from 4-7pm
@ Whetstone Park of Roses in Clintonville
Bring your family and friends. Bring a dish of your favorite food and/or
something to drink. Cups, plates, napkins, and eating utensils will be provided.
We always have a fun time chatting and eating and meeting new people so make
plans to come. We will also be doing the white elephant gift exchange again so
bring a wrapped gift to share in the fun.

Whetstone Park of Roses
3923 North High Street, Columbus, OH 43214, Tel: 614-645-3217 or call Columbus
Recreations & Parks, 614-645-3350.
DIRECTIONS: Whetstone Park is located in Clintonville off North High Street
behind the Whetstone Branch of the Columbus Metropolitan Library. From I-71,
exit on North Broadway, proceed East to High St., turn North on High Street,
proceed approximately 1.5 miles north to the Whetstone Park entrance located at
3901 N. High St. Enter at this location, follow the park entry road to the lower
parking lot. All parking is free; please use the lower lot adjacent to the
shelter house. We’ll be at the picnic tables near this lower parking lot. Just
look for signs that say SLEEP PICNIC and you’ll find us. You may even want to
take time to visit the 13-acre manicured gardens of 11,000 rose bushes of 350
varieties. Peak bloom is mid-June through mid-September.
________________________________________

'Sleep is a pervasive, universal, and fundamental behavior: it occupies a third
of our life;
it is present in every animal species where it has been studied; even partial
deprivation
  of sleep has serious consequences on cognition, mood, and health. All available
evidence indicates that sleep is “of the brain, by the brain, and for the
brain”. However, despite decades of intensive research, the mechanisms and
functions of sleep remain unclear.'
- quote from sleepconsciousness.org
________________________________________

WE ENCOURAGE OUR MEMBERS
to join the national organizations that address their individual concerns.
It’s an excellent way to keep up-to-date on recent developments in that field.
American Sleep Apnea Association  202-293-3650  www.apneasupport.org
Narcolepsy Network, Inc.  888-292-6522  www.narcolepsynetwork.org
Restless Legs Syndrome Foundation  507-287-6465  www.rls.org
National Fibromyalgia Association  714-921-0150  www.fmaware.org
Talk About Sleep www.talkaboutsleep.com

National Sleep Foundation is launching the National Sleep Foundation Hotline
today! Lines open at 6 p.m. ET

1-888-TIME 4 SLEEP (open M-F 6pm - 1am)

The National Sleep Foundation Hotline
Source: www.sleepfoundation.org
A Good Night's Sleep is Just a Phone Call Away Thanks to Westin Hotel & Resorts

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever.etsy.com

N[ART]: narcolepsyart - founder + coordinator:
groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

with people you may know (heather, patricia, sara)!
love this!! good job all!!!

http://www.nytimes.com/interactive/2009/08/26/health/TE_NARCOLEPSY.html?ref=heal\
th

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever.etsy.com

N[ART]: narcolepsyart - founder + coordinator:
groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

go do it! i know you can! emo + I already have! it's not as hard as you think.
go to lyrics.com to find words to your fav song + change em up to reflect N...
fun!

post/read new lyrics at narcolepsynetwork.org. go to the forum + search for
sleepy song or something like that. emo can you help me explain please? NN is
collecting altered lyrics to sing for the friday night gathering at the october
conference, karoke style.

i'll list my mercedes benz by janis joplin lyrics below.

THE N VERSION

i'd like to do a song of great social + sleep import...

Oh Lord, won’t you give me a night of good sleep?
  My friends are all snuggled, warm in their sheets.
  Worked hard to make it happen, all here on my own.
  But Lord, won’t make me peacefully prone?

Oh Lord, won’t you buy me a brand new shiny brain?
  Mine has been failing + leaving me only half sane.
  I wait for delivery each day until ten,
  So oh Lord, won’t you buy me some of that orexin?

Oh Lord, won’t you give me a night of good dreams?
  I’m counting on you, Lord, to get rid of the screams.
  Prove that you love me and give me a break,
  Oh Lord, won’t you give me a nice way to wake?

  Everybody!

Oh Lord, won’t you give me a night of good sleep?
  My friends are all snuggled, warm in their sheets.
  Worked hard to make it happen, all here on my own.
  But Lord, won’t make me peacefully prone?

  That’s it!

giggle...

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever.etsy.com
N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorder

http://narcolepsynetwork.org/forums/index.php?/topic/2973-sleepy-songs-written-b\
y-you

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorder

Hi Laura
� I was wanting to know when the next support group will be Iam going to come
.Also i did apply for disability and was just turned down and now the place I
worked for calledme back to work .I am havesome troble there but would like ot
know if this will feep me fropm getting disability.I also spoke to someoneeon it
An dwa told to wait until my unemployment ran out then I would beabe to get it
alot easer .Ifv I am laid off agian this is what I may do lety the unemployment
run out .Just before it does then reapply for disability.Talk top yo ulater Tom.


--- On Fri, 9/18/09, lje <dreamiestgirlever@...> wrote:


From: lje <dreamiestgirlever@...>
Subject: [central ohio sleep disorders] link to post NN song lyrics
To: "N list" <narcolepsy@...>,
centralohiosleepdisorders@yahoogroups.com
Cc: "deb poucher" <dreaming111@...>
Date: Friday, September 18, 2009, 6:02 PM


�



http://narcolepsyne twork.org/ forums/index. php?/topic/ 2973-sleepy-
songs-written- by-you

...
laura j evert
university district of columbus, ohio usa
tele: 614.784.8823 / cell: 330.285.5656
shop! dreamiestgirlever. etsy.com

N[ART] narcolepsyart: groups.yahoo. com/group/ narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo. com/group/
centralohiosleep disorder



















[Non-text portions of this message have been removed]

we hope to have a speaker talk about social security disability. i will share
details as planning continues.

we are also trying to start meetings up on the eastside again. ellen, could you
post harvey's info so that those interested can get involved + help him out?

i will be attending the narcolepsy network conference in jacksonville, florida
this october + will come back with lots of info to share with you. anyone else
going?

this is just a bit of what i captured. more to come another day. oxx

...
laura j evert
university district of columbus, ohio usa
tel: 614.784.8823
buy handmade! dreamiestgirlever.etsy.com

dreamiestgirlever.blogspot.com
facebook.com/dreamiestgirlever
vimeo.com/user1143446
twitter: @dreamiestgirl
myspace.com/dreamiestgirlever
myspace.com/luluastrologist : universal law readings on paper

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders





[Non-text portions of this message have been removed]

sorry. i think the link was missing in that last email. here it is...
vimeo.com/user1143446

...
laura j evert
university district of columbus, ohio usa
tel: 614.784.8823
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

the article i believe dr. william broughton's 2009 nn conference presentation
entitled 'the story of n: stumbling toward the truth' was based upon.

http://www.smithsonianmag.com/science-nature/stubborn.html

The Stubborn Scientist Who Unraveled A Mystery of the Night
Fifty years ago, Eugene Aserinksy discovered rapid eye movement and changed the
way we think about sleep and dreaming
By Chip Brown
Smithsonian magazine, October 2003

...
laura j evert
university district of columbus, ohio usa
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

Hello,

This email message is a notification to let you know that
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   Description : 2010 01 sleep mailing for JANUARY 17 meeting

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20mailing-1.doc

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Regards,

dreamiestgirlever <dreamiestgirlever@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the centralohiosleepdisorders
group.

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Regards,

dreamiestgirlever <dreamiestgirlever@...>

you can view the complete mailing in the files section of this group under '2010
01 sleep mailing-1.doc'.

i hope to see many of you on sunday! i know it's cold but come on out + join us.

i will do my best to bring a raffle item as in the past. if you have something
you would like to donate for the raffle, please bring it along. this is just for
fun. no money involved.

hot apple cider sounds good. i will try to bring that to share too. so come on
out!

we will also have a thank you card to sign for karen.

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com

I have been suffering with Narcolepsy for a few years now and have been
struggling with my current doctor.  I was wondering if anyone has a strong
opinion on which doctor to see for Narcolepsy in particular and any other
insider tips or suggestions for treating the disease.  Thanks!

great article from tracy nasca of talkaboutsleep.com reminding you + your loved
ones to take good care of your/their sleep health this year. read on...

May Your New Year’s Resolution Include Better Sleep Health
By: Tracy R. Nasca - January 1, 2010

Happy New Year!  Having a hard time choosing a New Year’s resolution?  Do you
want it to be related to your better health and well being?  Think sleep, an
activity in which we spend one third of our life.  Make the most of it!

Diagnose or rule out

If you have chronic sleep issues, problems falling asleep, staying asleep,
snoring and gasping for air in the middle of the night, falling asleep during
the day at inappropriate times, legs that won’t stay still when you retire for
sleep at night, take the plunge and make an appointment with a sleep specialist.
You can deal with anything if you know what it is!  A proper evaluation of your
sleep issues are in order, do it this year.  Commit to an overnight sleep study
to positively diagnose or rule out a sleep disorder.

Ask your primary care physician to refer you to a sleep specialist.  Here is a
link to a list of sleep centers accredited by the American Academy of Sleep
Medicine.  http://www.sleepcenters.org/  Click on your state to find a sleep lab
near you and note they list names of sleep doctors associated with the sleep
centers.

We are all concerned about the increased  cost of living, but our health should
be a top priority.  If you suspect sleep apnea, consider less expensive sleep
home testing such as those provided by companies like Instant Diagnostic Systems

In our struggling economy, many of us have lost jobs, health insurance or are
simply watching every penny.  Sleep deprivation reeks havoc on our bodies.  If
you are among the millions looking for a job, your sleep health is of vital
importance.  In addition to working on your resume, and lining up job
interviews, remember that first impressions are key!  When you go on that
interview, you want to be well rested and alert.

Commit to your treatment

If you have a diagnosed sleep disorder, commit to improving your treatment.  If
you are struggling with prescribed medication or equipment issues, take the
responsibility to follow up with your sleep doctor or home health provider. 
They can’t help you if you do not follow up and report your issues. 
Resolution may be as simple as a medication or dose change; an adjustment to
CPAP pressure or enabling a machine comfort feature.

Be proactive.  Make this year one that includes a positive attitude!  Henry Ford
said, “whether you think you can, or think you can’t, you’re probably
right”.  If you are struggling, seek help from your medical team.  They are
there to help but cannot do so unless you keep them in the loop.  Remember, YOU
are a part of that team!  Do YOUR part!

Participate in the free services available at our website
www.talkaboutsleep.com.  Our weekly chats and 24-7 message boards are a great
way to learn and receive patient to patient support!  Join in, we are here for
you!

READ THE FULL ARTICLE:
http://www.talkaboutsleep.com/sleep-disorders/2010/01/May-Your-New-Years-Resolut\
ion-Include-Better-Sleep-Health.htm

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders - NEXT MEETING JANUARY 17!

---ORININAL---
Narcoleptic and needing some guidance
Posted by: "dschmid17" dschmid17@...   dschmid17
Tue Jan 12, 2010 9:33 am (PST)

I have been suffering with Narcolepsy for a few years now and have been
struggling with my current doctor. I was wondering if anyone has a strong
opinion on which doctor to see for Narcolepsy in particular and any other
insider tips or suggestions for treating the disease. Thanks!

---RESPONSE---
hello dschmid17. first of all, we have a meeting this sunday, january 17, 2-4pm
@ elizabeth balckwell center near riverside hospital. come on out for it + learn
much more.

my opinion of the best n doctor in town by far is tim walter in grove city,
www.capitolsleepmedicine.com. after 2 others, he is the one i have stood by for
probably 9 years now. brillant!

many people really like robert clark of columbus community sleep disorders
center on south high st. at least i think that is what it is called. ellen?
others? speak up. he is very caring + one of the first in town.

first line of treatment for n these days is provigil + xyrem. this is my
cocktail. not perfect but with work it helps when i really need it to. there are
many different things that work for different pwn. the best thing to do is learn
as much from us who live it as possible + do your research + experiment w your
doctors help. a great place is the forums at narcolepsynetwork.org or lots of
info at talkaboutsleep.com.

the doctor i would say to stay away from is samadder of
columbussleepconsultants.com. he is simply not ethical + does not have your best
interest in mind.

EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince?
opinions?

SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on 
paper cup waste? i'm turning more + more green as the years go by + think every
little thing can be important.

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting sunday, JANUARY
17!

http://www.cutethingsfallingasleep.org

will some/all of you email the creator + ask if he'd be willing to add a link to
narcolepsynetwork.org among his other links, to add a little awareness to his
blog project? i can't seem to from my on-the-verge-of-ancient ibook. he seems to
be getting alot of press time so this could really be worth it.

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting SUNDAY, JANUARY
17!

Does anyone use SAD lights?  Are they effective?  Where did you get yours, from
a sleep doctor or light company?  Does Medicare or Medicaid cover them?

I am having one of the worst winters with no sunlight and am waking up every few
hours with back and neck pain.  I just started using a Bi-pap machine for sleep
apnea and am getting headaches every morning.

Does anyone else have a seasonal affective disorder?

Also when does this group have it's meetings?  I thought there was one in
January, did I miss it already?

Are there many group members that participate, do you have speakers come in or
do members talk to each other for support only.

Would appreciate any answers someone might be able to provide me!

Thanks,

Scott

[Non-text portions of this message have been removed]

What is xyrem and what kind of dose do you use of provigil?  I use adderall for
my stimulant to stay awake and trazodone to sleep, but it's not working as well
for sleep and doctor thinks I am on way too high of a dose, although I have been
on it for 25 years.

What else are people using for meds for sleep apnea or narcolepsy?

They told me I have atypical narcolepsy and sleep apnea.


Any help would be greatly appreciated!

Scott
   ----- Original Message -----
   From: lje
   To: centralohiosleepdisorders@yahoogroups.com
   Cc: dschmid17@...
   Sent: Wednesday, January 13, 2010 3:44 PM
   Subject: [central ohio sleep disorders] re: Narcoleptic and needing some
guidance



   ---ORIGINAL---
   Narcoleptic and needing some guidance
   Posted by: "dschmid17" dschmid17@... dschmid17
   Tue Jan 12, 2010 9:33 am (PST)

   I have been suffering with Narcolepsy for a few years now and have been
struggling with my current doctor. I was wondering if anyone has a strong
opinion on which doctor to see for Narcolepsy in particular and any other
insider tips or suggestions for treating the disease. Thanks!

   ---RESPONSE---
   hello dschmid17. first of all, we have a meeting this Sunday, January 17,
2-4pm @ elizabeth balckwell center near riverside hospital. come on out for it +
learn much more.

   my opinion of the best n doctor in town by far is tim walter in grove city,
www.capitolsleepmedicine.com. after 2 others, he is the one i have stood by for
probably 9 years now. brillant!

   many people really like robert clark of columbus community sleep disorders
center on south high st. at least i think that is what it is called. ellen?
others? speak up. he is very caring + one of the first in town.

   first line of treatment for n these days is provigil + xyrem. this is my
cocktail. not perfect but with work it helps when i really need it to. there are
many different things that work for different pwn. the best thing to do is learn
as much from us who live it as possible + do your research + experiment w your
doctors help. a great place is the forums at narcolepsynetwork.org or lots of
info at talkaboutsleep.com.

   the doctor i would say to stay away from is samadder of
columbussleepconsultants.com. he is simply not ethical + does not have your best
interest in mind.

   EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any
experince? opinions?

   SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on
paper cup waste? i'm turning more + more green as the years go by + think every
little thing can be important.

   ...
   laura j evert
   olde north neighborhood of columbus, ohio usa
   tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
   buy handmade! dreamiestgirlever.etsy.com

   N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
   CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders - NEXT meeting sunday, JANUARY
17!




[Non-text portions of this message have been removed]

Both xyrem and provigil are good meds and are helpful for a lot of people. 
There are some, though, that find that provigil does nothing for them.  There
are also people who find the side effects of xyrem to be too much to put up
with.  I agree with Laura that your best is to go on to the Narcolepsy Network
or the talk about sleep website.
 
I think the largest recommended dose of provigil is 2 200mg tablets, usually
taken with one in the morning and one with lunch.  Just recently I reduced my
dose at lunch time to 1/2 a pill because I was running low.  After a couple of
days I found that I wasn't any sleepier than on the full dose and was sleeping
slightly better, so I've stayed with that.
 
Xyrem caused me to lose lots of weight, so I ended up going off of it.
 
My doctor is Robert W. Clark on South High Street.  I think that he is the best
diagnostician of all of the sleep doctors in town.  He prides himself on that
and gets quite a few patients that fly into Columbus for his diagnosis.  His
people skills, though, aren't the best.
 
All best wishes,
 
Ellen Haider
--- On Wed, 1/20/10, appleheadq@... <appleheadq@...> wrote:


From: appleheadq@... <appleheadq@...>
Subject: Re: [central ohio sleep disorders] re: Narcoleptic and needing some
guidance
To: centralohiosleepdisorders@yahoogroups.com
Date: Wednesday, January 20, 2010, 4:15 AM


 




What is xyrem and what kind of dose do you use of provigil? I use adderall for
my stimulant to stay awake and trazodone to sleep, but it's not working as well
for sleep and doctor thinks I am on way too high of a dose, although I have been
on it for 25 years.

What else are people using for meds for sleep apnea or narcolepsy?

They told me I have atypical narcolepsy and sleep apnea.

Any help would be greatly appreciated!

Scott
----- Original Message -----
From: lje
To: centralohiosleepdis orders@yahoogrou ps.com
Cc: dschmid17@yahoo. com
Sent: Wednesday, January 13, 2010 3:44 PM
Subject: [central ohio sleep disorders] re: Narcoleptic and needing some
guidance

---ORIGINAL- --
Narcoleptic and needing some guidance
Posted by: "dschmid17" dschmid17@yahoo. com dschmid17
Tue Jan 12, 2010 9:33 am (PST)

I have been suffering with Narcolepsy for a few years now and have been
struggling with my current doctor. I was wondering if anyone has a strong
opinion on which doctor to see for Narcolepsy in particular and any other
insider tips or suggestions for treating the disease. Thanks!

---RESPONSE- --
hello dschmid17. first of all, we have a meeting this Sunday, January 17, 2-4pm
@ elizabeth balckwell center near riverside hospital. come on out for it + learn
much more.

my opinion of the best n doctor in town by far is tim walter in grove city,
www.capitolsleepmed icine.com. after 2 others, he is the one i have stood by for
probably 9 years now. brillant!

many people really like robert clark of columbus community sleep disorders
center on south high st. at least i think that is what it is called. ellen?
others? speak up. he is very caring + one of the first in town.

first line of treatment for n these days is provigil + xyrem. this is my
cocktail. not perfect but with work it helps when i really need it to. there are
many different things that work for different pwn. the best thing to do is learn
as much from us who live it as possible + do your research + experiment w your
doctors help. a great place is the forums at narcolepsynetwork. org or lots of
info at talkaboutsleep. com.

the doctor i would say to stay away from is samadder of columbussleepconsul
tants.com. he is simply not ethical + does not have your best interest in mind.

EVERYONE, i have lost touch with the sleep staff/doctors at OSU. any experince?
opinions?

SUGGESTION FOR MEETING on sunday: bring your own coffee mug to cut down on paper
cup waste? i'm turning more + more green as the years go by + think every little
thing can be important.

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever. etsy.com

N[ART] narcolepsyart: groups.yahoo. com/group/ narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo. com/group/
centralohiosleep disorders - NEXT meeting sunday, JANUARY 17!

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
meeting dates for the year 2010 (the third sunday of each quarter):
April 18, July 18, August 15 (picnic), October 17
@ elizabeth blackwell center, 2-4pm - except the picnic which is usually held
from 4-7pm. mark your calendars now so you don't miss us!

JANUARY 17 MEETING
we had 10 participants at our sunday meeting + kathy, ohiohealth social worker.
i think everyone there had a narcolepsy diagnosis but some had sleep apnea also.
we talked alot about nutrition + natural alternatives to medication. many
expressed their ongoing struggle to make it day-to-day financially +
emotionally.

on the topic of nutrition + natural alternatives, i would recommend this book:
Prescription for Nutritional Healing (Prescription for Nutritional Healing, 3rd
ed) (Paperback)
http://www.amazon.com/Prescription-Nutritional-Healing-3rd/dp/1583330771/ref=dp_\
ob_title_bk. beyond the recommendations for different conditions/illnesses, it
has a great overview of the current thoughts on healthy, natural eating +
nutrition. this is the book often on hand in the supplement/herbal section at
stores like wild oats + whole foods to guide customers in their choices.

on the topic of struggling/coping, i would like to recommend the work of rubin
naiman who has been a speaker at the NN conferences over the past few years. he
always impresses me with his views about sleep + dreams + consciousness.
http://www.drnaiman.com/articles/another-view-of-narcolepsy. an audio CD of his
presentations should be available for purchase soon from NN. i would highly
recommend it!

(please add to this if you were at the meeting + have something to share)

MEDICATION
for those with questions about medications re: narcolepsy, there is a place on
narcolepsynetwork.org in the online forums that addresses each one individually.
i think you will find it helpful to read other's experiences + you could even
ask questions directly to an individual who has commented on a specific
medication. a great resource!

ONLINE NARCOLEPSY SUPPORT + OHIO NARCOLPESY GROUP
i discovered a new online narcolepsy support group with 798 members.
http://www.dailystrength.org/c/Narcolepsy/support-group

some of us with narcolepsy are wanting to meet monthly. we've tried this before
+ failed so... we know we have to make it fun + engaging. we will try a potluck
soon in an interesting, less formal meeting space. if interested, join here -
OHIO NARCOLEPSY GROUP:
http://www.dailystrength.org/groups/ohio-narcolepsy-group.

this would be a spin-off of our regular group with most communications through
the above listed link. it was started by marilyn who was not aware of our group.
i was able to meet her at the NN conference this past october. she owns a
consignment + we might just end up meeting there. what do you think? i hope to
go meet with her soon to plan the first get-together + will report back.

10/2010 NN CONFERENCE in WASHINGTON DC
i've been asked to be on the planning committee so as info comes my way, i will
ask for your opinions + help. many NN ohio members are hoping to bring the
conference to columbus in 2011 so i am happy to learn all i can + get you
involved as much as you would like to be.

...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com

N[ART] narcolepsyart: groups.yahoo.com/group/narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders
OHIO NARCOLEPSY GROUP: http://www.dailystrength.org/groups/ohio-narcolepsy-group