Sunday, January 29, 2012

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
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.

Wednesday, January 25, 2012

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: SleepCheckAlicePDxIDS 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.