Thursday, December 5, 2013

December Meeting Reminder

The Next Meeting of the
Midwest Narcolepsy Support Group
is scheduled for
Saturday, December 7, 2013
  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)     
At this Meeting we will talk about 
STRESS and the HOLIDAYS and COPING MECHANISMS
We will also try to answer any questions you might have about the Conference  
(for those of you who were unable to attend)
If time permits, we will also have an open discussion on Narcolepsy and living with Narcolepsy
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

Good News! We have a new conference phone WITH two extension speakers so 
we should have much better success hearing and understanding each other 
if you decide to call in.
 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:
1 (866) 374-5135 ~ Passcode ~ 8283408#

Sunday, October 27, 2013

November Meeting Reminder

The Next Meeting of the
Midwest Narcolepsy Support Group
is scheduled for
Saturday, November 2, 2013
  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)     
At this Meeting we will answer any questions you might have about the Conference  
(for those of you who were unable to attend)
and we will have an open 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:
1 (866) 374-5135 ~ Passcode ~ 8283408#

Monday, October 21, 2013

Atlanta Conference - 2013 - Summary

We arrived at the conference site around 5:00 on Friday - just in time to check in, get situated in my room, go through conference registration and get to the special focus group to discuss the journey to getting diagnosed with narcolepsy. The focus group was not open to all conference goers but to a group of members who had volunteered to be a part of the focus group and then had been selected from the group of volunteers.

After the focus group, my support team and I met up at the "Meet & Greet" where we connected with many other members of the MNSG as well as a few from our sister group in Kenosha. We also connected with several old friends from previous conferences.

Everyone was tired from their day of travel, so we left the party early (no ice cream for me on Friday) and went to bed with great anticipation for an exciting and informative conference to begin on Saturday.

To outline each session would take more energy than I can gather at the moment. Suffice it to say, the conference had a record breaking attendance of over 400 participants, the sessions were interesting, the member meeting was lively, and the extra activities seemed to satisfy the socialization needs of most people! 

There were a lot of sleepy, happy, people exchanging emails and other contact information with friends, both old and new as they left Atlanta, most already making plans to meet up again in 2014 in Denver!!

Wednesday, October 16, 2013

2013 Narcolepsy Network Conference - Atlanta - Here We Come!!

The conference is just a couple of days away and I am getting packed so I will be ready to leave tomorrow. We are driving to Atlanta so will be leaving late Thursday with a rest stop scheduled in Indy and then onward to Atlanta. If time and energy permits, will post updates on conference activities for those unable to join us. As always, I am both excited and a little apprehensive (crowds aren't my strong suit) but am very much looking forward to seeing everyone and meeting new people.


Hope to see you at the conference. If not, will see you soon!!

Sunday, October 6, 2013

Something to Think About



Just sharing a re-post from one of our narcoleptic friends on Facebook. I found that I could relate to the sentiment.

Tuesday, October 1, 2013

October Meeting Reminder

The Next Meeting of the
Midwest Narcolepsy Support Group
is scheduled for
Saturday, October 5, 2013
  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
We will also try to answer any questions you might have about the upcoming Conference
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:
1 (866) 374-5135 ~ Passcode ~ 8283408#

Thursday, September 5, 2013

September Meeting Reminder

JusFriendlReminder
The Next Meeting of the
Midwest Narcolepsy Support Group
is our 
4th Annual Family & Friends Picnic
scheduled for

Saturday, September 7, 2013
12:00 noon until 5:00 PM
at
Montrose Harbor
check our website for directions.

We hope to see you there!!

(Sorry, but the phone lines will be down for the picnic, in case anyone was wondering)

Saturday, August 24, 2013

September PICNIC

The next meeting of the
The next meeting of the
Midwest Narcolepsy Support Group
is scheduled for
Saturday, September 7, 2013.
In liew of our regular meeting we will be having our
4th Annual MNSG Family and Friend Picnic
12:00 pm - 5:00 pm
at
Montrose Harbor
Located off of Lake Shore Drive at Montrose Ave/Drive exit
Look for the Orange and Blue Balloons!!
There's free parking all along both sides up and down Montrose Dr. 
This event is open to all patients, family, friends, support "team" members
(last year we were joined by many canine friends as well!!)
Join us for food, friendship, and a fun, relaxing Saturday at the beach
Drinks and Sandwiches will be generously supplied with funds provided by the Narcolepsy Network
Feel free to bring a dish to share as a welcome addition to our meal but it is not required for you to attend.
You might also want to bring chairs and blankets to ensure yourself of "comfortable" seating arrangements.
contact us at midwestnarcolepsy@gmail.com or gridles13@hotmail.com with questions or any special requests. If you need someone to give you more explicit directions or to meet you at the Bait Shop to make sure you get to the picnic spot, let us know.
Also, if you could just touch base with someone to letus know that you are coming so we are sure that we have enough for everyone, it would be appreciated.
Thanks a lot and we hope to
SEE YOU AT THE PICNIC!!
From the North:
From I-94 E. Take exit 41B to merge onto US-14 E/N Caldwell Ave/W Peterson Ave toward 6000 N. Continue to follow US-14 E/W Peterson Ave for 4.3 mi. Take a Slight right onto N Ridge Ave in 0.8 mi.
Take a Slight left onto W Bryn Mawr Ave in 0.3 mi.
Make a Slight right to merge onto N Lake Shore Dr in 0.7 mi
Continue onto U.S. 41 S/N Lake Shore Dr in 0.7 mi
Take the exit toward Montrose Ave in 394 ft
Turn left onto N Marine Dr in 223 ft
Take the 1st left onto W Montrose Ave in 0.5 mi
Turn right onto Montrose Dr in 0.3 mi
Turn right to stay on Montrose Dr in 0.2 mi
From the West:
From I-90 E. Take exit 44A for Keeler Ave toward Irving Park Rd/IL-19 in 0.2 mi.
Keep right at the fork, follow signs for Illinois 19 W and merge ontoKennedy Irving Park Road in 436 ft.
Make a Slight left onto W Irving Park Rd in 4.0 mi
Turn left onto N Sheridan Rd in 0.7 mi
Turn left onto W Montrose Ave in 0.9 mi
Turn right onto Montrose Dr in 0.3 mi
Turn right to stay on Montrose Dr in 0.2 mi
From the South:
From I-90 W/Interstate 94W.
Take exit 53C on the left to merge onto I-55 N/Stevenson Expy
toward Lake Shore Dr/Stevenson Expy N for 1.3 MI.
Take the U.S. 41 S/N Lake Shore Dr exit on the left for 0.5 mi.
Merge onto U.S. 41 S/N Lake Shore Dr in 8.0 mi
Take the Montrose Ave exit in 0.1 mi.
Turn right onto W Montrose Dr in 0.4 mi
Turn right onto Montrose Dr in 0.3 mi
Turn right to stay on Montrose Dr in 0.2 mi

Friday, August 2, 2013

August Meeting -- Room Change Notice!

There is a last minute room change for tomorrow's meeting on Saturday, August 3.

Our group has been relocated to room 1711 for this month only.

Please stop by the front desk if you need directions to the new room.

Thank you!

Sunday, July 28, 2013

August Meeting Reminder



The Next Meeting of the
Midwest Narcolepsy Support Group
is scheduled for


Saturday, August 3, 2013
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 months topics are:
How Can We Help People Who Sleep Understand What a Sleep Disorder Is?
Picnic 2013
Suddenly Sleepy Saturday 2014 
Narcolepsy Network Conference 2013 -  Atlanta, Georgia 
This meeting is open to ALL - patients and their "Support Team" members

We have a toll free conference line available for those who are unable to join us in person.
Feel free to call in on the number below.
1 (866) 374-5135
Pass code: 8283408 #
  We look forward to seeing you there!

Wednesday, July 3, 2013

July Meeting Reminder



The Next Meeting of the
Midwest Narcolepsy Support Group
is scheduled for

Saturday, July 6, 2013
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 months topics are:

Picnic 2013
Suddenly Sleepy Saturday 2014 
Narcolepsy Network Conference 2013 -  Atlanta, Georgia 
Medication - insurance and other challenges
Building bridges and challenging ourselves and others

This meeting is open to ALL - patients and their "Support Team" members
We have a toll free conference line available for those who are unable to join us in person.
Feel free to call in on the number below.
1 (866) 374-5135
Pass code: 8283408 #
  We look forward to seeing you there!
 
 


 

 

Sunday, June 2, 2013

June Meeting

Our June meeting was awesome and I hope those of you who attended enjoyed it as much as I did.

Not only did we get our toll free number back, but we may be close to getting a real conference phone so that people will be able to hear better. (Don't misunderstand, a conference phone is made available to us through the Sleep Center, but there are some difficult logistics involved in picking it up and dropping it off that have made it an option that we haven't utilized in a very long time. So we have been using a less than optimal "kitchen phone" [with speaker option] as it is fondly referred to, as our optional conference phone.)

We were joined by one of the doctors from the Sleep Center who answered many questions and cleared up a lot of things for some of the newer attendees. (And some of the more seasoned members as well).

Discussion was lively and varied. Many people stayed well beyond the 12:00 end time. Here are some highlights that came from the meeting:
  •  We may have visitors next month to help demonstrate some relaxation techniques that should help with coping. Watch for the meeting reminder to see if that is going to happen for sure.
  • We may be getting a real conference phone soon
  • The Narcolepsy Network Annual Conference is scheduled for October 18-20 in Atlanta, Ga. Registration should be ready to begin very soon. Watch for notices from the Narcolespy Network. We will also post them here as soon as we know about it.
  • If you think you can't go because of the money, the Narcolepsy Network offers scholarships. APPLY FOR ONE. They set aside a certain amount of money specifically to be used for scholarships and nothing else. Don't let it go to waste.
  •  Our Annual Picnic will be on September 8 and will take the place of our regular September meeting. We are currently planning to have it at Montrose Harbor. I just looked it up and it looks like an amazing place for a picnic. More on that as it gets closer.
  • We are starting now to plan next yesrs Suddenly Sleepy Saturday event (which we are also talking about having at Montrose Harbor). If you have ideas or would like to help plan, send information to gridles13@hotmail.com
Lastly, a few words about our website. This website has been up and running for a little over 2 years now. In that time we have grown from being happy to have two people a day look at our website to where we now have close to 600 people each month who visit us!


What that means for YOU is that people are looking here. If you have a question, ask it. Write a comment with your question. Maybe someone will have an answer.

If I have learned anything in this journey called life, it is that you will never get an answer if you don't first ask a question.

Have a wonderful day, week, month! You will hear from us when we have something relatively important to say.



Friday, May 3, 2013

May Meeting Reminder


Saturday, May 4

****Note Last Minute Room Change****
The Next Meeting of the
Midwest Narcolepsy Support Gr0up 
is scheduled for
Saturday, May 4, 2013
  10:30 am - 12:00 noon
at NorthShore University HealthSystem
 2650 Ridge, Evanston, IL 60201
Meeting Rooms 
****2520A/B Walgreens Building****
- adjacent to the Womens Hospital - at Evanston Hospital -
 (ask for directions at the Information/Concierge desk)    

This month we will be talking about  
        •  Suddenly Sleepy Saturday  2014
        •  Narcolepsy Network Conference - Atlanta, Georgia - 2013 - 
        •  Anything else that is on your mind 
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:

1 712 432 3900

Passcode

912689#

 

Thursday, April 25, 2013

Upcoming Event Reminders!


Saturday, April 27
Suddenly Sleepy Saturday - Midwest Style
We're going to do what we do best (second to sleeping)

Let's Eat!
Saturday, April 27
Meet at 9:30 am for 
Breakfast/Brunch/Coffee/Tea
at
Walker Brothers Pancake House
 in

Lincolnshire
200 Marriott Drive
Lincolnshire, IL 60069
847-634-2220
If you plan to join us, please let us know how many will be attending at the following email address: gridles13@hotmail.com
Let's get together, kick back, relax and enjoy some down time with some old friends and potential new friends! Please join us.


Saturday, May 4

The Next Meeting of the
Midwest Narcolepsy Support Gr0up 
is scheduled for
Saturday, May 4, 2013
  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)    

Saturday, May 11

The Next Meeting of the
SouthEast Wisconsin Narcolepsy Support Gr0up 
is scheduled for
Saturday, May 11, 2013
  10:30 am - 12:00 noon
at the Kenosha YMCA Building
 7101 53rd Street, Kenosha, WI 53144
the Meeting is in Pat's Office
 (ask for directions at the Information desk) 


Directions: located on the south side of 52nd Street west of Hwy 31 and east of I94, if you are east of hwy 31 you went too far (Culvers), just ask at the front desk and they will direct you to the conference room.