December Meeting Reminder - LATE - I'm Sorry!

The Next Meeting of the

Midwest Narcolepsy Support Gr0up

is scheduled for

Saturday, December 1, 2012

  10:30 am - 12:00 noon

at NorthShore University HealthSystem

 2650 Ridge, Evanston, IL 60201

Meeting Rooms G952-G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)     

This Meeting we will be talking about 
dealing with stress, the holidays and 
sharing coping strategies that may be unique 
for people living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

November Meeting Reminder

The Next Meeting of the

Midwest Narcolepsy Supp0rt Gr0up

is scheduled for

Saturday, November 3, 2012

  10:30 am - 12:00 noon

at NorthShore University HealthSystem

Evanston Hospital

 2650 Ridge, Evanston, IL 60201

Meeting Rooms G952-G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)     

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

27th Annual Narcolepsy Network Conference Attendee Notes - One Person's Observations

The Conference was different this year, viewed from a different perspective because I  volunteered at the conference and did my best to help in planning and setting things up. I got to see how much work went into it, how early everything started (meetings started as early as January/February/March) and how much still had to be done at the last minute. I can tell you, the men and women who have done this for years deserve medals of valor for having put together some amazing programs through the years and this years conference was no exception.

There were a wide variety of sessions offered ranging from crafty sessions for the young and young at heart to the more medically focused sessions to learn the latest advances in research to less medical but none the less helpful sessions like "How to make the most of your doctors visits".

Every time slot had the potential for four or five different sessions making it virtually impossible for you to get to everything. I had my husband and  my daughter there and they helped cover sessions, but we still didn't see them all (we weren't interested in them all either).

There was even a quiet room set up with cots for those who absolutely couldn't function any longer without a nap. I can vouch for the fact that the cots were quite comfortable but they could have used a couple more of them as well as a couple more blankets.

We took full advantage of all of the activities we could by going to dinner in Little Italy at Mama Santa's on Friday with about 8 to 10 of our new best friends and had some delicious food and a wonderful time. On Saturday, we went on the NAUTICA QUEEN dinner cruise where the service was fantastic, the food adequate, the company superb and I discovered that I was claustrophobic. Too many people with no place to go got very old after three hours. I was very ready to get off the boat.

The hotel was also very nice. And you couldn't beat the price.

As with anything, nothing is perfect and there are always things that can be improved. The food was not the best - desserts were very nice but you can't live on deserts (the chocolate bomb was very good). We were not close to alternate food options so we just ate what was offered.


Overall, I felt the conference was a huge success. The date for next years conference has not been announced, but the location has been.

The 28th Annual Narcolepsy Network Conference is planned to be held in Atlanta, Georgia!! 

We hope to see you all there!!

Anyone who attended, please feel free to add their thoughts by posting comments here.

Car Pool Reminder

The Conference is fast approaching and if you need a ride to Cleveland to attend the Narcolepsy Network conference October 19 - 21, and you are local to southeast Wisconsin or northeast Illinois, we may have a solution for you!

The plan is to rent vans and drive (we have non-narcoleptic volunteers!) to Cleveland. Each van can seat six comfortably and seven slightly more cozily. With the cost of the van and gas, it would be $80/person round trip. (If we have fewer people we will rent SUV's or something less expensive and adjust the cost.)

If you'd like to participate, please send us an email at midwestnarcolepsy [at] gmail [dot] com as soon as possible. We need to know who is interested by October 13, 2012 in order to arrange for the vans and drivers.

Thank you!

October Meeting Reminder!

The Next Meeting of the

Midwest Narcolepsy Supp0rt Gr0up

is scheduled for

Saturday, October 6, 2012

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2650 Ridge, Evanston, IL 60201

Meeting Rooms G952-G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)     

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

Don't forget about our PICNIC!

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for Saturday, September 8, 2012. 
 In lieu of our regular meeting we will be having our 
 3nd Annual Midwest Narcolepsy Support Group Family and Friend Picnic from 1:00 pm - 5:00 pm at Lincoln Park Zoo, South Pond  
located  off Lake Shore Drive at the Fullerton Parkway exit. Look for the orange and blue balloons!

(please note that there is a fee to park in the Zoo parking lot)
Come and picnic with us!!

Car pool!

Do you need a ride to Cleveland to attend the Narcolepsy Network conference in October?

Are you local to southeast Wisconsin or northeast Illinois?

If so, we may have a solution for you!

We are planning to rent vans and drive (we have non-narcoleptic volunteers!) to Cleveland. Each van can seat six comfortably and seven slightly more cozily. With the cost of the van and gas, it would be $80/person round trip.

If you'd like to participate, please send us an email at midwestnarcolepsy [at] gmail [dot] com. We need an accurate headcount by September 30, 2012 in order to arrange for the vans and drivers.

Thank you!

Narcolepsy Network Patient Conference Early Bird Registration Ends August 15!!!

To get discounted registration for this year's conference, registration must be received by end of day August 15. Go to (Narcolepsy Network Patient Conference 2012).

Also, all scholarship applications are due by the end of the day, August 15. For applications, go to Narcolepsy Network Conference Scholarship Applications 2012_final.

Hope to see you there!

The Life of the Sleepy Person Conference - One Person's Opinion

On Saturday, July 21, 2012 - the University of Illinois at Chicago's Center for Narcolepsy Sleep and Health Research sponsored it's 8th version of their Sleepy Person's Conference. They hold the conference every three years to benefit all of the sleepy people in the Chicagoland/Midwest area who are able to attend. 

Due to funding considerations, this year's conference was delayed for over a year. For this conference the focus was on Narcolepsy - not sleep apnea or any of the more notable sleep disorders. And, lets face it, narcolepsy just isn't as "sexy" as the other sleep disorders. So getting funding isn't as easy if you don't combine narcolepsy with something more "profitable". 

The conference focused on helping people with Narcolepsy learn how to live with it in their everyday life. 

The agenda was diverse and well rounded covering a wide variety of topics ranging from an overview of Narcolepsy in general, to both traditional and non-traditional treatments, to the status of Narcolepsy research to how it is diagnosed. There was even a panel discussion featuring several members of our support group where they were asked to share their various ways of coping with the challenges of being a narcoleptic in 2012.

The conference was free and both a continental breakfast and a very nice lunch were included. The biggest concern I heard from most guests was that the speakers were so enthusiastic about their topics that every one of them spoke longer than they were scheduled for so that one of the speakers didn't get to present on their topic at all. It made for a long day ( from 9 am until about 3:30 with a break for lunch and two short breaks to get up and stretch ).

All and all it was a very successful conference and I look forward to the next one, hopefully in 2015!                                                                                                                             

August Meeting Date Change

The Date for the August Meeting of the

Midwest Narcolepsy Supp0rt Gr0up

originally scheduled for

Saturday, August 4, 2012 

has been changed to

 Saturday, August 11, 2012

due to a scheduling conflict 

the time is still:

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2650 Ridge, Evanston, IL 60201

Meeting Room G952 - Evanston Hospital

The Life of the Sleepy Person Conference

For Information on The Life of the Sleepy Person Conference which is scheduled for July 21 use the link provided. You will find information regarding  registration, the agenda, location, just about anything you need to know. And to correct our earlier post, this event is being sponsored by the University of Illinois at Chicago's Center for Narcolepsy Sleep and Health Research.


Hurry and register. The date is fast approaching. We hope to see you there! 

June 2 Meeting Overview

On Saturday, June 2, we had a great meeting. Our members on the conference line had a very interesting discussion spanning a wide variety of topics. There were questions about the use of Nuvigil and Adderall together as well as concern about how to start a support group locally. Some of the people in our group call in from as far away as Florida, Massachusetts or Missouri while our home base is in the Chicago area. Although we love making contact on the phone and through emails, there is nothing quite like a face to face contact that you can make with a support group that is physically rewarding.

We do understand the challenges of putting together a support group and our steering committee would be happy to work with any of our members who might want to start their own groups.  Just contact us via email and we will do our best to answer your questions or, if we can’t, we will find someone who can.

While our long distance members were involved in a discussion, the local members were advised of the date for the Sleepy People Conference, sponsored by the University of Chicago. We are very excited that this day long conference will be sponsored in our own “backyard” so to speak. The date is scheduled for Saturday, July 21. The place is the University of Chicago’s Medical Center in Chicago, Illinois. The topic is Sleepy People (like you and me). More details will follow.

Notice that our home page has added a SUBSCRIBE button. Enter your email address and you will be added to our mailing list for notifications about future meetings, new posts to the website, announcements about conferences, whatever information we share via the website will be passed along to anyone listed as a SUBSCRIBER. 

July Meeting Reminder

The Next Meeting of the

Midwest Narcolepsy Supp0rt Gr0up

is scheduled for

Saturday, July 7, 2012

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2501 Ridge, Evanston, IL 60201

Meeting Rooms G952-G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)     

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

SAVE THE DATE!

Sleepy Person's Conference  

sponsored by UIC Sleep Center to be held on

Saturday, July 21, 2012

in Chicago

(details coming soon!!)  

June Meeting Reminder

The Next Meeting of the

Midwest Narcolepsy Supp0rt Gr0up

is scheduled for

Saturday, June 2, 2012

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2501 Ridge, Evanston, IL 60201

Meeting Rooms G952-G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)     

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

May Meeting Reminder

The next meeting of the

  Midwest Narcolepsy Support Group

  is scheduled for

  Saturday, May 5, 2012

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

 2650 Ridge, Evanston, IL 60201

Meeting Room 1711 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)    

This Meeting will be an open forum discussion on Narcolepsy and the everyday challenges of living with Narcolepsy

It is open to ALL -  patients and their "Support Team" members.

Please join us. As always, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

2012 Narcolepsy Network Patients Conference

Plans are currently underway for the 27th Annual Narcolepsy Network Conference which is scheduled for October 19-21 in Cleveland,Ohio. Several members of our Support Group are involved in the various committees that are dedicated to making this years conference the best it can be. For more information, look at the Narcolepsy Network website (27th Annual Narcolepsy Network Conference).

This years keynote speaker is Emmanuel Mignot, MD, PhD, Director, Stanford University Center for Narcolepsy who you don't want to miss.

April Meeting Reminder

The next meeting of the

  Midwest Narcolepsy Support Group

  is scheduled for

  Saturday, April 14, 2012

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

 2650 Ridge, Evanston, IL 60201

Meeting Room G952,G956 - Evanston Hospital

 (ask for directions at the Information/Concierge desk)    

This Meeting will be an open forum discussion on Narcolepsy and the everyday challenges of living with Narcolepsy

It is open to ALL -  patients and their "Support Team" members.

Please join us. As always, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

Looking for help with pricey drugs

We have someone who is wondering if anyone knows of a program that might provide prescription assistance for individuals who have Narcolepsy? 

This request comes from someone who states they have searched for any type of prescription assistance program to help with Dextroamphetamine, Dexedrine or Dextrostate, but cannot find anything. Neither GlaskoSmithKline nor Amedra Pharmaceuticals offer a program for Dexedrine since it is offered in a generic form (Dextroamphetamine). Even though Dextroamphetamine is a generic drug, its price (even for this generic drug) is nearly $400.00 per month. 

Anyone with any ideas, please comment here or by email to midwestnarcolepsy@gmail.com

Suddenly Sleepy Saturday

Narcolepsy Network and the Midwest Narcolepsy Support Group

Present the

Chicago Sleep Walk 2012

Join us on March 10th, 2012
 from 9:30 AM to 1:00 PM (CT)

to celebrate

Suddenly Sleepy Saturday

a

Narcolepsy Awareness Day

We will meet on the south side Jay Pritzker Pavilion lawn in Millennium Park

Everyone is invited, please invite your friends and family to join us in raising awareness to Narcolpesy and sleep health.

Everyone is encouraged to make signs and shirts for the event, lets be bright!

Afterward we will have drinks and snacks. 

If you have any questions please contact Sarah DiDavide

sdidavide@narcolepsynetwork.org

 To register, go to Chicago Sleep Walk 2012 

March Meeting Reminder

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, March 3, 2012

10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

2650 Ridge, Evanston, IL 60201

Meeting Room G954
Evanston Hospital

(ask for directions at the Information/Concierge desk)

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

No Reservation is required.

February Meeting Summary

The February meeting was well attended, both in person and on the phone. We had a guest from UIC who is in the planning stages of a "Sleepy People" Conference to be scheduled hopefully in the early part of 2013 in the Chicago-land area. It would be a day-long conference and we were being asked for possible topics for seminars or sessions to be held during the conference.

If you have any suggestions, you can forward them to julielaw@uic.edu.

There was also a lively debate regarding the benefits of treating narcolepsy with diet vs drugs and whether or not they should or must be mutually exclusive. The end result of the debate was that it is a personal choice that should be respected by all and that we should not be judgmental of those who choose differently than we do.  

February Meeting Reminder

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, February 4, 2012

10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

2650 Ridge, Evanston, IL 60201

Meeting Room in the Burch Building
Burch G18 - Evanston Hospital
Please Note The Room Change

(ask for directions at the Information/Concierge desk)

This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy

It is open to ALL - patients and their "Support Team" members.

Join us, your input is invaluable.

For those who can't join us in person, the conference phone is:

866 249 2022 code 4897648210#

No Reservation is required.

January Meeting - WOW! What A Way To Start 2012!

Our first meeting for the new year was AWESOME! We saw lots of new faces and heard several new voices from as far away as Massachusetts, Florida and Rhode Island. We welcome you all!
One member's recent sleep related injury prompted a discussion about the possibility of finding yourself incapacitated with no one in the immediate area to assist you. Some suggestions were made about how to handle those situations including:

• Keeping your cell phone with you 24/7 via a lanyard or velcro wrist or arm band
• Using a service like one of the following could provide a possible solution:      Rescue Alert          Life Alert          Medical Alarm          (These are just a few of the listings found when you search for emergency medical alarm & panic button system. Some of these services can be set up to call a family member when you press your "panic button" before any emergency services are called. There is a monthly fee for all of these services.)
• Contact your local fire department or police department, especially if you live alone, and make them aware of your situation and concerns. See if they have any suggestions.
• Another thought was to set up something like a baby monitor to allow verbal communication from different parts of the residence.

Additional discussion centered around finding a good doctor to work with regarding your sleep related issues, as well as different medications and their possible side effects. There was also considerable discussion about workplace accommodations: how to get them; what kind of accommodations would be appropriate; how to be your own best advocate; to tell or not to tell your employer about your situation, etc.

One participant mentioned using a device called a Zeo which acts as a home sleep monitoring system and is being used by some to help successfully "take control of their sleep". It is relatively inexpensive and is definitely worth doing a little more research on. There are several links with information regarding other systems or just regarding home sleep monitoring in general such as: SleepCheck, AlicePDx, IDS Home Sleep Testing and numerous others that can be found by searching the internet.

It was a very interesting meeting with a lot of good information shared.
Looking forward to a great meeting in February.