Please join us for our next support group meeting at the Elizabeth
Blackwell Center on Sunday, April 22, 2012 from 2-4pm.  Jim Heffernan
and Suzanne Holt, our 2 new mentors from OhioHealth Sleep Services are
doing the program.  It is about The History of Sleep Medicine.  Jim
wrote the presentation that will be given by Suzanne.  It's actually
like a detective story of how the pioneers of sleep medicine very
recently discovered what is known about how we sleep and what can go
wrong with the process.  This is a topic of great relevance to each of
us, so we hope to see you there.
     (The Elizabeth Blackwell Center is our usual meeting place located
just north of Riverside   Hospital.  If you need more detailed
information, please refer to one of the quarterly   announcements to
previous meetings posted on this site.)



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

A DIFFERENT WAY TO TREAT SLEEP APNEA

One of our members shared with us an article that was in the Cleveland
Plain Dealer on February 28, 2012 (p.E1).  It is titled "Sound
Asleep Without a Sound".  It's about a treatment for Sleep Apnea
called Provent that was approved by the Food and Drug Administration in
2008.  Provent looks like two little circular Band-Aids, adhesive
patches that have a clear plastic valve in the center of each.  You
place one of the patches over each nostril before you go to bed.  The
valves open when you inhale and partially close when you exhale.  That
builds up pressure in the airway, which opens the back of the throat so
that air can go through.  (It only works if your mouth is closed.)
Provent is recommended only for people with mild or moderate apnea who
have been unable to adapt to a CPAP machine.

I asked one of our sleep specialists about it and he said that tests by
someone other than the manufacturer are still needed.  Still, he's
tried it successfully on some patients after they've been in the
sleep lab.  They try using it for a week and then come back to the lab
to be tested using it.

It's expensive--$4 per night-- because the patches can only be used
once. More and more insurers are covering it.

If you try it, let us know how it goes!



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

I will be unable to attend. Dorothy and I are performing with the Christ Church
Choir the Messiah by Handel at 3pm. We volunteered for this performance as we
had performed it a number of times with the Church of the Messiah in
Westerville. Ed Edward J. Howard
2617 Camino Pl W
Kettering, OH  45420-3932
937-293-1562
edhoward@...

---------- Original Message ----------
From: "ellenhaider" <ellenhaider@...>
To: centralohiosleepdisorders@yahoogroups.com
Subject: [central ohio sleep disorders] Our next meeting on April 22
Date: Mon, 02 Apr 2012 15:49:11 -0000



Please join us for our next support group meeting at the Elizabeth
  Blackwell Center on Sunday, April 22, 2012 from 2-4pm. Jim Heffernan
  and Suzanne Holt, our 2 new mentors from OhioHealth Sleep Services are
  doing the program. It is about The History of Sleep Medicine. Jim
  wrote the presentation that will be given by Suzanne. It's actually
  like a detective story of how the pioneers of sleep medicine very
  recently discovered what is known about how we sleep and what can go
  wrong with the process. This is a topic of great relevance to each of
  us, so we hope to see you there.
  (The Elizabeth Blackwell Center is our usual meeting place located
  just north of Riverside Hospital. If you need more detailed
  information, please refer to one of the quarterly announcements to
  previous meetings posted on this site.)

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






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

NARCOLEPSY NETWORK CONFERENCE

IS COMING TO OHIO

The Narcolepsy Network Conference will be held in Cleveland this year
from October 19-21.  It will be at the Intercontinental Hotel.  Several
researchers and narcolepsy specialists will be speaking there.  They
also usually have some of the members present various topics such as
coping skills.

Long ago the conference was in Cincinnati and I couldn't get a ride
so I didn't go.  I've been kicking myself ever since, because
Laura Evert would come back with such glowing reports of bonding, etc.
I'm not missing this year!  This is your chance!  It may not be held
in this area again for a long time.

Perhaps some of us can team up on transportation and sharing rooms.
I've been looking into a new service that Greyhound is offering to
compete with the Megabus that has been so successful in offering good
low cost bus service.  There is a Greyhound Express bus that goes
directly from Columbus to Cleveland.  There was an article in the
Columbus Dispatch about it on March 17 titled "Low-fare Greyhound
line to run from here". Perhaps several of us could take it
together.



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

Narcolepsy: Sleep Disorder Causes Paralysis, Hallucinations and Social Isolation
- ABC News
http://abcnews.go.com/Health/narcolepsy-sleep-disorder-paralysis-hallucinations-\
social-isolation/story?id=16066916#.T36nQ2BJlhh

 
...
laura j evert
olde north neighborhood of columbus, ohio usa

o CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

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

Hi, I am interested in attending but unsure if I would be able to get a ride
from Bryan, OH (or I'm sure I make it to somewhere near Toledo). Just curious if
anyone is driving near there. I lost my license due to a narcoleptic episode so
I'm pretty much stuck. I'm new to this group, but read the forwards/emails.
Thank you!

-Carrie

--- In centralohiosleepdisorders@yahoogroups.com, "ellenhaider"
<ellenhaider@...> wrote:
>
>
> NARCOLEPSY NETWORK CONFERENCE
>
> IS COMING TO OHIO
>
> The Narcolepsy Network Conference will be held in Cleveland this year
> from October 19-21.  It will be at the Intercontinental Hotel.  Several
> researchers and narcolepsy specialists will be speaking there.  They
> also usually have some of the members present various topics such as
> coping skills.
>
> Long ago the conference was in Cincinnati and I couldn't get a ride
> so I didn't go.  I've been kicking myself ever since, because
> Laura Evert would come back with such glowing reports of bonding, etc.
> I'm not missing this year!  This is your chance!  It may not be held
> in this area again for a long time.
>
> Perhaps some of us can team up on transportation and sharing rooms.
> I've been looking into a new service that Greyhound is offering to
> compete with the Megabus that has been so successful in offering good
> low cost bus service.  There is a Greyhound Express bus that goes
> directly from Columbus to Cleveland.  There was an article in the
> Columbus Dispatch about it on March 17 titled "Low-fare Greyhound
> line to run from here". Perhaps several of us could take it
> together.
>
>
>
> [Non-text portions of this message have been removed]
>

Im not for sure what route im being taken from delaware ohio im in grove city
however a friends i took my calculus classes with has told me shes gonna take
the day off work to help me get there as i could use learning some coping skills
and meeting others with it i still have my license amd ive totaled 3 volkswagen
fell asleep on the second one on the freeway heading into the concrete divider
at 94mph fractured my C1, T7-T8 with broken ribs and concussion wasnt til a year
later from back pain i found out my discs from L5-s1 are. Bulging to the left
then a year later i was diagnosed with narcolepsy with cataplexy went on
intermittent fmla leave at work so i could try to get myself together as it was
risky for me to drive in rush hour especially while then i was on adderall which
worked so well however i was bei g harassed at work by my boss so i reported it
as i didnt feel comfortable hed accuse me of being high etc when it stated.
Clearly on my fmla i was on a changing drug regimen well they drug tested me on
suspicion after i filed harassment against my boss and terminated me 3 weeks
later stating my documentation wasnt valid enough. I always suffered from panic
disorder and getting fired over trying to get my life back together caused me to
have a nervous breakdown my sleep dr was fine with xanax but flipped out when my
family dr put me on clonazepam which helped better than xanax as xanax counters
the stimulant making me sleeepy clonazepam doesnt, anyways my sleep dr gotad cuz
my family dr who refered me to him gives me nerve pills and hydrocodone 10/325
for my pain issues arising from my back neck amd butt anyways i had to get put
on ritalinast summer due to the adderall shortage i also take nuvigil which is
nasty messes with my stomach and my pharmaciat told me its one of the top 5
worst drugs you can take with the most interactions and just like pemoline
cylert which is banned due to liver failure pro and nuvigil are both heavily
metabolized in the liver nor do they work well fore so i can ask my ride if we
could stop before heading up shell be going to my sleep dr with me to express
concern over nuvigil and that the ritalin does not work very well for me and wed
prefer to get switched back to 60mgs of adderall a day and if nothing else at
least ritalin sr 3 times a day as i had to do a mental status evaluation for my
disability appeal where they told me i shouldnt be driving because i was doing
so poorly paying attention and remembering things whatd ssid do turned around
and denied me cuz i can walk without assistance same excuse they gave me the
first time and this time my psychiatrist even did a full on psych eval
diagnosing me with schizoaffective dislrder panic disorder with agoraphobia
sleep disprder in narcolepsy which my MSLT is off the charts i was hitting rem
sleep so fast and pain disorder due to my back and car accidents breaking bones.
Im hoping they help us with coping at this seminar cuz im to tye threshold and
multiple drs have stated i decompensate and need to stay inside or more
medication. Im not understanding why my sleep dr wont put me back on adderall at
least i could drive then now he tells me not to drive let me know if u get a
ride ill see if i cant find someone to help get you a ride

Sent from my iPhone

On Apr 6, 2012, at 8:01 AM, "Carrie" <missprincessmac@...> wrote:

> Hi, I am interested in attending but unsure if I would be able to get a ride
from Bryan, OH (or I'm sure I make it to somewhere near Toledo). Just curious if
anyone is driving near there. I lost my license due to a narcoleptic episode so
I'm pretty much stuck. I'm new to this group, but read the forwards/emails.
Thank you!
>
> -Carrie
>
> --- In centralohiosleepdisorders@yahoogroups.com, "ellenhaider"
<ellenhaider@...> wrote:
> >
> >
> > NARCOLEPSY NETWORK CONFERENCE
> >
> > IS COMING TO OHIO
> >
> > The Narcolepsy Network Conference will be held in Cleveland this year
> > from October 19-21. It will be at the Intercontinental Hotel. Several
> > researchers and narcolepsy specialists will be speaking there. They
> > also usually have some of the members present various topics such as
> > coping skills.
> >
> > Long ago the conference was in Cincinnati and I couldn't get a ride
> > so I didn't go. I've been kicking myself ever since, because
> > Laura Evert would come back with such glowing reports of bonding, etc.
> > I'm not missing this year! This is your chance! It may not be held
> > in this area again for a long time.
> >
> > Perhaps some of us can team up on transportation and sharing rooms.
> > I've been looking into a new service that Greyhound is offering to
> > compete with the Megabus that has been so successful in offering good
> > low cost bus service. There is a Greyhound Express bus that goes
> > directly from Columbus to Cleveland. There was an article in the
> > Columbus Dispatch about it on March 17 titled "Low-fare Greyhound
> > line to run from here". Perhaps several of us could take it
> > together.
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>

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

Below I have posted a message that I received from a woman who works at
C-PAP Central, a store that sells all things C-PAP.  I've been told that
it is up by Polaris.  In the message, Michelle is asking if we would
like to have someone from the store come to speak at one of our
meetings.  The problem is that most of our meetings are at a OhioHealth
facility and they have their own company that supplies C-PAP to their
patients. They would not want to have a competitor speak at their
facility.  They had mentioned the possibility of going up to their store
after hours.  Or we could look for another place to have a meeting.
I guess my first question, though, is whether you are interested in our
group hearing what they have too say.  You may just want to go up and
have a look at the store yourself.  If you are interested in having it
as a program for the support group, any suggestions about when and where
to have the meeting?
Post your responses on this site, please, so we can get a conversation
going about it.
Ellen
Good morning, My name is Michelle and I work for C-PAP Central, a local
retail store providing sleep apnea supplies to consumers. I am writing
to inquire if your group would ever be interested in having one of our
reps come out and talk to you about our store and sleep apnea in
general. We are all about giving the patients the power and education to
control their therapy. We are also getting ready to start a series of
after hours forums that will connect experts in the field with the
consumer and give them a chance to share their own experiences. If you
are interested in more information I would be happy to provide it. Thank
you for your time! MichelleC-PAP Central(614) 842-2136
www.cpapcentralonline.com <http://www.cpapcentralonline.com/>




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

Here's the most information from the Narcolepsy Network websit







2012SAVE THE DATE!
   [150]
<http://www.narcolepsynetwork.org/wp-content/uploads/2012/02/InterContin\
ental-Hotel.jpg> We are delighted to announce that the InterContinental
Hotel Cleveland <http://www.intercontinentalcleveland.com/>  (Ohio) will
host our 27th Annual Conference from October 19-21 this year. Several
researchers and narcolepsy specialists have already agreed to present.

HOTEL

27th Annual Narcolepsy Network Conference
October 19 – 21, 2012

Intercontinental Cleveland Hotel
(on the campus of the Cleveland Clinic)

<http://www.ichotelsgroup.com/intercontinental/en/gb/locations/maps-dire\
ctions/cleveland> 9801 Carnegie Avenue
Cleveland, Ohio 44106

Group Hotel Rate: $99/night (bef. tax)
(1 King or 2 European Twins*)
*(slightly narrower than a U.S. double bed)
Group rate valid 10/15 through 10/25
Reserve your hotel room now!
     * By phone: (216) 707-4000 or (877) 707-8999.  Request Group Code
"POY".
     * Online: Click here.
<http://ichotelsgroup.com/redirect?path=rates&brandCode=IC&GPC=POY&hotel\
Code=CLEHA&_PMID=99801505>   Enter Group Rate "POY".

EVENTS

Pre-Conference Events on Friday. October 19:

     * Optional: Early afternoon visit to the Rock & Roll Hall of Fame
     * Evening Reception/Meet `n' Greet (included with conference
registration)

Optional Outing on Saturday Evening, October 20:

     * Group Dinner Cruise aboard the Nautica Queen

CONFERENCE PROGRAM

Keynote Speaker: Emmanuel Mignot, MD, PhD
Director, Stanford University Center for Narcolepsy

Choose from 3 concurrent tracks featuring the latest in research,
treatments and lifestyle management; complementary and alternative
strategies; support and resources.



Coming soon: Conference Registration, updates on confirmed speakers and
session topics, scholarship opportunities




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

http://initrd.com.ar/old/blog/wp-content/plugins/disable-wordpress-plugin-update\
s/work.php?hill1.gif

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

The following article was published in the most recent issue of
Snewsalert published by the Ohio Sleep Medicine Institute.  The research
will be conducted from their office in Dublin.

Sleep Apnea Clinical Trial The more you lose, the more you may gain
Volunteer for an investigational medication weight loss study
Do you start the day tired? If you have sleep apnea, explore a non-CPAP
clinical research study option. This investigational medication study
will help find out if weight loss improves sleep apnea symptoms.
Qualified participants receive all study medication, study-related care
and nutritional counseling at no cost. You may qualify if you are:

         • at least 18 years of age

         • overweight

         • unable or unwilling to use CPAP

         • not diagnosed with type 1 or 2 diabetes


To volunteer, call 614.766.0773 ext. 111


Addressing Sleep Apnea

CPAP treatment opens your airway, but doesn't resolve the underlying
problems that cause sleep apnea. Researchers want to find out if weight
loss can improve airflow and reduce the dangerous risk factors
associated with sleep apnea.

About Sleep Apnea

In patients with sleep apnea, low airflow causes restless,
non-restorative sleep. As a result, you may be experiencing daytime
sleepiness and poor concentration. This puts you at risk for driving and
work-related accidents. Untreated sleep apnea can also lead to serious
health conditions, including high blood pressure, type 2 diabetes, heart
attack and stroke.

About The Study

If you qualify, you will receive all study medication, study-related
care, and nutritional counseling at no cost. You may also be compensated
for your time and travel to the study center. You will be asked to
participate in the study for about nine months. During that time, you
will receive close monitoring from the study team and weight loss
support. Additionally, you will be asked to:

         • make regular visits to the study center

         • take part in three separate overnight sleep evaluations

         • follow a diet and exercice plan

         • chart your progress in a study diary

While the study will focus on the effects of weight loss on sleep apnea,
losing weight may bring additional benefits for long-term health.
Consider volunteering.

Home <http://www.sleepmedicine.com/index.cfm>  » Sleep Apnea Clinical
Trial

sleep apnea clinical trial, sleep apnea, sleep apnea and weight loss,
sleep apnea research study, sleep apnea medication, ohio sleep medicine
institute



© 2012 Ohio Sleep Medicine Institute. All Rights Reserved. More
Information <http://www.sleepmedicine.com/content.cfm?article=31> .

adjust text size A
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2&utm_medium=email>  A
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trialsClinical Trial OpportunitySleep Apnea & Weight Loss; Insomnia &
Non-24-Hour Sleep Wake Disorder
   learn more <http://www.sleepmedicine.com/content.cfm?article=63>
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Annual Meeting
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<http://www.sleepmedicine.com/content.cfm?article=1986APSSmeeting>
news Read the latest sleep news
   learn more <http://www.sleepmedicine.com/industrynews.cfm>
share Share the information you have learned
   share now <http://www.sleepmedicine.com/assets/include_files/share.cfm>





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

Please join us Sunday, July 15 from 2-4pm  @ The Elizabeth Blackwell
Center

We will share our favorite sources of information for coping with our
sleep-related problems at our meeting on July 15.
Laura Evert (She's back!) will start the ball rolling by telling us
about Julie Flygare, a 28 yr old woman with narcolepsy and cataplexy who
helped to start wakeupnarcolepsy.org <http://wakeupnarcolepsy.org/> .
We'll also check to see if everyone understands how to use our yahoo
group and discuss some of the groups available on facebook.

What sources have you found helpful?  (I'm old fashioned, so my
favorite source is a book!) Bring something to share or just come
prepared to learn.

Light refreshments will be provided.


The Elizabeth Blackwell Center will no longer be available to us for
meetings after our meeting in July.  They are closing the facility.  Any
suggestions as to other possible meeting sites for the group?

(The Elizabeth Blackwell Center is north of Riverside Hospital.  The
address is 3635 Olentangy River Road.)

Hope to see you there!






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

Mark your calendars now!





Come out and play with us at our picnic/potluck August 19

5:00-700 at Whetstone Park!



We will meet to share food and fun and heartfelt understanding.  Please
bring a dish of food to share, but if you cannot, just bring yourself.
All else will be provided.  We will be there rain or shine (so hope for
sunshine). Family and friends are welcome.




Just for fun, we will have a white elephant gift exchange.  Bring a
wrapped gift and we will play a game where you try to steal the best
gift for yourself.  If you have lawn chairs, bring those too.




For those who wish to stay, the Clintonville Community Band and Choir
will be in the Park of Roses at 7:00 for a free concert.




How to Get There:  The entrance to Whetstone Park and the Park of Roses
is next to the Whetstone Branch of the Columbus Metropolitan Library at
3909 North High Street.  It is north of North Broadway and south of
Henderson and Cook.  Take the road back until it crosses a small bridge.
Make a left after the bridge and look for the Sleep Picnic sign.




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

MORE ABOUT THE

NARCOLEPSY NETWORK CONFERENCE



This year's Narcolepsy Network Conference will be held in Cleveland
the weekend of October 19-21.  It will be at the Intercontinental Hotel
(on the campus of the Cleveland Clinic).  You can make hotel
reservations at narcolepsynetwork.org or by calling 216-707-4000 or
877-707-8999.  Request group rate "POY".  (The cost of rooms is
$99 per night before tax.)

The keynote speaker will be Dr. Emmanuel Mignot, the director of the
Stanford University Center for Narcolepsy and the primary researcher
into the causes of narcolepsy in the United States.  You will also have
the choice of 3 options for each conference session with a wide variety
of topics including Narcolepsy Basics, Research Updates, Current
Treatments, Lifestyle Management, Support Options, Alternative
Approaches and Additional Resources.

The Narcolepsy Network website will be posting updates on confirmed
speakers, session topics, full agenda and scholarship opportunities.

This is a wonderful opportunity for us to attend and to share with
others who have narcolepsy from all over the country!





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

http://julieflygare.com/nice-news-segment-narcolepsy-cataplexy/

 
...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (24 hr messaging) / cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com
{please consider the environment before printing this e-mail}

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

Wish I could have made it today, really like the speakers dealing with
narcolepsy.  I was unable to make it to the meeting due to a prior engagement. 
I was wondering if anyone had a summation of what was discussed at the meeting
that might be helpful to those of us with narcolepsy who were unable to attend.

Thanks,
Danielle

--- In centralohiosleepdisorders@yahoogroups.com, "ellenhaider"
<ellenhaider@...> wrote:
>
>
> Please join us Sunday, July 15 from 2-4pm  @ The Elizabeth Blackwell
> Center
>
> We will share our favorite sources of information for coping with our
> sleep-related problems at our meeting on July 15.
> Laura Evert (She's back!) will start the ball rolling by telling us
> about Julie Flygare, a 28 yr old woman with narcolepsy and cataplexy who
> helped to start wakeupnarcolepsy.org <http://wakeupnarcolepsy.org/> .
> We'll also check to see if everyone understands how to use our yahoo
> group and discuss some of the groups available on facebook.
>
> What sources have you found helpful?  (I'm old fashioned, so my
> favorite source is a book!) Bring something to share or just come
> prepared to learn.
>
> Light refreshments will be provided.
>
>
> The Elizabeth Blackwell Center will no longer be available to us for
> meetings after our meeting in July.  They are closing the facility.  Any
> suggestions as to other possible meeting sites for the group?
>
> (The Elizabeth Blackwell Center is north of Riverside Hospital.  The
> address is 3635 Olentangy River Road.)
>
> Hope to see you there!
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

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.

   File        : /N facebook resources.doc
   Uploaded by : dreamiestgirlever <dreamiestgirlever@...>
   Description : N groups on FACEBOOK

You can access this file at the URL:
http://groups.yahoo.com/group/centralohiosleepdisorders/files/N%20facebook%20res\
ources.doc

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/l/us/yahoo/groups/original/members/web/index.html
Regards,

dreamiestgirlever <dreamiestgirlever@...>

hi danielle. at the meeting we were introduced to julie flygare, a PWN+C and a
sleep activist. you can read all about her and her various media appearances at
julieflygare.com. she is quite impressive and inspiring.

we also talked about N groups on facebook. i've attached a file listing all the
ones i could find but in case you can't open the file, i have listed the
contents below. hope to see you soon! maybe in cleveland?

--- In centralohiosleepdisorders@yahoogroups.com, "Danielle" <dschmid17@...>
wrote:
>
> Wish I could have made it today, really like the speakers dealing with
narcolepsy.  I was unable to make it to the meeting due to a prior engagement. 
I was wondering if anyone had a summation of what was discussed at the meeting
that might be helpful to those of us with narcolepsy who were unable to attend.
>
> Thanks,
> Danielle

...........

NARCOLEPSY GROUPS ON FACEBOOK
Information as of 06/27.2012
………………………………....................................................................\
............................

  N. R. G. (Narcolepsy Resource Group)
"http://www.facebook.com/#!/groups/narcresource/members/"

Closed Group / 294 members

Wisdom is nothing more than healed pain. ~Robert Gary Lee
Est. February 2,
2010,

This is a place to help collect, sort, and disseminate information about
resources for people with Narcolepsy. Many of us have other autoimmune and/or
autonomic issues, and we do discuss this also. This is not a support group but a
place where information on Narcolepsy can be discussed. (this has now changed)
This is not a group of professionals giving advice. This is strictly a place for
people with narcolepsy to discuss what is known. Please know that some of this
info may be completely wrong and that a person must always rely on what their
medical providers tell them. This is not a place for diagnosis.

If
you wish to discuss a topic that has already been created, then please post your
comments within the existing category. Create a new discussion only if there is
not a discussion already started.
………………………………....................................................................\
............................

Narcolepsy Support Group
http://www.facebook.com/#!/groups/2212151373/members/

Open Group / 1619 members

Welcome! This is a group for people with narcolepsy and hypersomniacs to meet,
talk, and empathize with each other. We all work hard to be supportive of each
other.
………………………………....................................................................\
............................

PWN
http://www.facebook.com/#!/groups/peoplewithnarc/members/

Secret Group /  465 members

Members have Narcolepsy, IH, or are in the process of being diagnosed and wish
to connect with others who understand.

This group is for PWN ONLY.
If you are looking for support as a careperson for someone with Narcolepsy,
please join us at  "http://www.facebook.com/planetnarcolepsy". Message @Jessica
Stanton for other resources.
………………………………....................................................................\
............................

Narcolepsy Network
http://www.facebook.com/#!/groups/narcolepsynetwork/members/

Open Group / 1703 members

For people who are part of the Narcolepsy Network or for those that wish to
learn more about what we stand for. Also a general meeting place to meet and
talk about those that are affected in one way or another by Narcolepsy (directly
or indirectly)
………………………………....................................................................\
............................

N[ART] narcolepsy art
http://www.facebook.com/#!/groups/194351243920481/members/

Closed Group / 59 members

N[ART] is a grassroots effort to educate the world about the neurological
sleep/wake disorder narcolepsy + the importance of sleep through continuous +
evolving creative works + projects.
………………………………....................................................................\
............................

Narcoleptics
http://www.facebook.com/#!/groups/2210106425/members/

Open Group / 342 members

A group for those of us who have narcolepsy. I have no clue what, if anything,
will become of this group, but I looked for an existing one for narcoleptics and
only found one that seemed to be making fun of it, so I decided to create a
group for those of us who actually have it.

Idiopathic
hypersomniacs are also more than welcome to join this group, as are
family/friends of people with N/IH.

………………………………....................................................................\
............................

Danielle and others,

Just to make it clear, we didn't have a "real professional" at our meeting last
Sunday. Instead (and in some ways much better) one of our members, Laura Evert
(aka dreamiest girl ever), caught us up on some of the sources available to
people with narcolepsy.  Most of the sources she told us about are now posted on
this site.  One is a message about a young woman named Julie Flygare who has
become an activist (One would have thought that was an oxymoron for someone with
narcolepsy, but apparently not in Julie's case)and is the author of a blog "REM
runner" among other things.  Another source she told us about is on this site,
but accessible not under "messages" but under "files".  It lists some of the
sources on Facebook that are very active regarding narcolepsy.  (Darn.  I guess
I'll have to bite the bullet and finally sign up for Facebook.)  Laura also
brought us some copies of a very good article describing N that appeared in the
New York Times on Tues., March 6 titled "Too Often, Doctors Overlook
Narcolepsy".

One of my favorite sources of information is the book "Narcolepsy Primer: A
Guide for Patients and Professionals" by Meeta Goswami and Michael Thorpy of the
Montefiore Medical Center in The Bronx.  It can be ordered through their website
www.narcolepsy institute.org for $12. It's only slightly dated having been
published in 2006, but packs a lot of information into 36 pages.

Does anybody else have some favorite sources of information regarding sleep to
recommend?  Don't be shy. Speak up!


--- In centralohiosleepdisorders@yahoogroups.com, "Danielle" <dschmid17@...>
wrote:
>
> Wish I could have made it today, really like the speakers dealing with
narcolepsy.  I was unable to make it to the meeting due to a prior engagement. 
I was wondering if anyone had a summation of what was discussed at the meeting
that might be helpful to those of us with narcolepsy who were unable to attend.
>
> Thanks,
> Danielle
>
> --- In centralohiosleepdisorders@yahoogroups.com, "ellenhaider" <ellenhaider@>
wrote:
> >
> >
> > Please join us Sunday, July 15 from 2-4pm  @ The Elizabeth Blackwell
> > Center
> >
> > We will share our favorite sources of information for coping with our
> > sleep-related problems at our meeting on July 15.
> > Laura Evert (She's back!) will start the ball rolling by telling us
> > about Julie Flygare, a 28 yr old woman with narcolepsy and cataplexy who
> > helped to start wakeupnarcolepsy.org <http://wakeupnarcolepsy.org/> .
> > We'll also check to see if everyone understands how to use our yahoo
> > group and discuss some of the groups available on facebook.
> >
> > What sources have you found helpful?  (I'm old fashioned, so my
> > favorite source is a book!) Bring something to share or just come
> > prepared to learn.
> >
> > Light refreshments will be provided.
> >
> >
> > The Elizabeth Blackwell Center will no longer be available to us for
> > meetings after our meeting in July.  They are closing the facility.  Any
> > suggestions as to other possible meeting sites for the group?
> >
> > (The Elizabeth Blackwell Center is north of Riverside Hospital.  The
> > address is 3635 Olentangy River Road.)
> >
> > Hope to see you there!
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>

07/19/2012
'N Remains Misunderstood and Underdiagnosed'
http://www.huffingtonpost.com/russell-rosenberg-phd/narcolepsy_b_1659659.html

 
...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (24 hr messaging) / cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com


o N[ART] narcolepsyart on YAHOO!: groups.yahoo.com/group/narcolepsyart
o N[ART] narcolepsyart on
FACEBOOK: http://www.facebook.com/groups/194351243920481/
o OHIO NARCOLEPSY GROUP:
http://www.dailystrength.org/groups/ohio-narcolepsy-group
o CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

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

Please join us for a meeting on Sunday, Sept. 23 from 2-4Location: The
Ohio Sleep Medicine Institute in DublinSpeaker: Dr. Markus SchmidtTopic:
Restless Leg Syndrome Impact if it is untreated Treatment options The
role of iron deficiency in its managementYou may RSVP to 614-766-0773
ext. 101, but if you don't respond in advance you are still  welcome
to come.Light refreshments will be served.
The Ohio Sleep Medicine Institute4975 Bradenton Ave.Dublin, Ohio
43017Bradenton runs off of Frantz Rd. south of Route 161 and north of
Hayden Run Rd. Complete directions available at www.sleepmedicine.com



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

WHAT ARE YOU DOING ON AUGUST 19 FROM 5:00-7:00?
COMING TO OUR PICNIC AT WHETSTONE PARK!
WHAT ELSE?
Bring a dish of food to share.  All else will be provided.We will be
there rain or shine (so hope for sunshine).Family and friends are
welcome.
If you wish, bring a wrapped gift for the white elephant gift
exchange.If you have extra lawn chairs, bring them along.
How to get there:  The entrance to whetstone Park and the Park of Roses
is next to the Whetstone Library at 3909 N. High St.  It is north of
North  Broadway and south of Henderson and Cook.  Take the road back
until it crosses a small bridge.  Make a left after the bridge and look
for the Sleep Picnic sign.


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

It's on my calendar, I hope we will be able to make it.Ed Edward J. Howard
2617 Camino Pl W
Kettering, OH  45420-3932
937-293-1562
edhoward@...

---------- Original Message ----------
From: "ellenhaider" <ellenhaider@...>
To: centralohiosleepdisorders@yahoogroups.com
Subject: [central ohio sleep disorders] Don't forget our picnic on August 19!
Date: Sat, 04 Aug 2012 23:47:13 -0000


<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.01//EN"
"http://www.w3.org/TR/html4/strict.dtd">
WHAT ARE YOU DOING ON AUGUST 19 FROM 5:00-7:00?
COMING TO OUR PICNIC AT WHETSTONE PARK!
WHAT ELSE?
Bring a dish of food to share. All else will be provided.We will be
there rain or shine (so hope for sunshine).Family and friends are
welcome.
If you wish, bring a wrapped gift for the white elephant gift
exchange.If you have extra lawn chairs, bring them along.
How to get there: The entrance to whetstone Park and the Park of Roses
is next to the Whetstone Library at 3909 N. High St. It is north of
North Broadway and south of Henderson and Cook. Take the road back
until it crosses a small bridge. Make a left after the bridge and look
for the Sleep Picnic sign.

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







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

NARCOLEPSY NETWORK CONFERENCEComing soon to a city near you.October
19-21 at the Intercontinental Hotel in ClevelandRegister for conference
online or by mail.Early Bird rate of $210 before August 15  After that,
price for adults is $230.Full information available at
narcolepsynetwork.org.




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

anyone planning on going? need to share rides? taking greyhound? i will be
driving to the conference with glenn in a pickup truck so no room for more
people but lots of room for artwork (hint hint). contact me if you have some art
you want me to bring + display for you. officialness is attached...
 
...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (24 hr messaging) / cell: 330.285.5656 (no voice mail)


o N[ART] narcolepsyart on YAHOO!: groups.yahoo.com/group/narcolepsyart
o N[ART] narcolepsyart on
FACEBOOK: http://www.facebook.com/groups/194351243920481/
o OHIO NARCOLEPSY GROUP:
http://www.dailystrength.org/groups/ohio-narcolepsy-group
o CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

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

Central Ohio Sleep Disorders Support Group's Potluck Picnic TODAY! 5-7pm at
Whetstone Park in Clintonville. Look for the 'Sleep Picnic' sign. If you can't
bring anything, just bring yourself. All are welcome!

http://www.youtube.com/watch?v=NMmMNyTwePY

 
...
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (24 hr messaging) / cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever.etsy.com


o N[ART] narcolepsyart on YAHOO!: groups.yahoo.com/group/narcolepsyart
o N[ART] narcolepsyart on
FACEBOOK: http://www.facebook.com/groups/194351243920481/
o OHIO NARCOLEPSY GROUP:
http://www.dailystrength.org/groups/ohio-narcolepsy-group
o CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP:
groups.yahoo.com/group/centralohiosleepdisorders

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

The Dispatch has had a special section on a topic regarding to health once a
month on a Sunday.  This month the topic was sleep.

Here are links to a couple of the articles:

http://www.dispatch.com/content/stories/local/2012/08/26/health/what-keeps-you-u\
p-at-night.html

http://www.dispatch.com/content/stories/local/2012/08/26/health/no-rest-for-slee\
p-medicine-practitioners.html

Dear Support Group Member,
We would appreciate your input as to how the Central Ohio Sleep
Disorders Support Group can best serve your needs.  Please take a moment
to complete the questionnaire below and send it directly to
ellenhaider@....
Thanks for your assistance,
Ellen, Mary and LauraSupport Group Steering Committee Members
Please give us your input about meetings of the Central Ohio Sleep
Disorders Support Group and mail them directly to ellenhaider@...
1.  Are you still interested in attending Sleep Support meetings?

2.  If so how often do you feel that meetings should be held?      a.
every 3 mos.      b. every 4 mos.       c. every 6 mos.

3.  Is distance to meetings a problem when determining attendance?
4.  Do you feel the Sleep Support Group still has relevance for you?
5.  Have the meetings/information received been beneficial to you?
6.  If  we no longer can use Ohio Health facilities for meetings would
you still attend if meetings were held in a restaurant, cafe, or a
library?
7.  Is time/day of week of meetings something you would like to
change?If so, please give a suggestion as to change.
8.  What keeps you from coming to meetings more often?



Thank you for your time.  We don't want to waste yours.  Our group has
been meeting for a long time.  We want to ensure that people are still
interested.  We realize that you can get information on issues regarding
sleep disorders through other sources, but still feel there is a need
for discussion among ourselves.





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

Please check your calendar to see if you have made a note of our meeting
on September 23 from 2-4 at The Ohio Sleep Medicine Institute.  Dr.
Markus Schmidt will talk about Restless Leg Syndrome.  He will include
The impact of untreated Restless Leg Syndrome Current treatment options
The role of iron deficiency in the management of Restless Leg.
You may RSVP to 614-766-0773 ext. 101.  In the event you do not respond
in advance, you are still welcome to come.
In the second hour, we will support each other through group
discussion.Light refreshments will be served.
The Ohio Sleep Medicine Institute4975 Bradenton Ave. Dublin,Ohio
43017Bradenton runs off of Frantz Rd. south of Route 161 and north of
Hayden Run Rd.
More complete directions are available at www.sleepmedicine.com.
We hope to see you there!



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