December Meeting - Holiday Wishes!

Our December meeting was a very good meeting with lots of participation from new people both in the room and on the phone!

However, it brought a specific problem up that has been noted before in discussions within the steering committee but we have never really brought it back to the group.

Here is the issue: when we have mixed participation both in the room and on the phone, it is sometimes difficult to share time so that everyone gets a chance to "share". When people are on the phone, it can be difficult to hear if more than one person is talking at a time. It is just sometimes hard when there is so much sharing going on.

We have discussed reserving the first 1/2 hour or the last 1/2 hour for the "on site" participants, just to make sure that they have an opportunity to speak and be heard.

As we have said before, this is a learning process for all of us. We will do our best to find a way to make it work for everyone. I apologize if anyone was offended at the meeting when they were asked to keep quiet on the phone to allow for feedback from within the room or if they were in the room and felt they didn't have an opportunity to speak.

The meeting covered a wide variety of topics, focusing on adjusting to narcolepsy when first diagnosed, adjusting when that diagnosis occurs during adolescence, and just plain adjusting to being different. We also discussed dealing with employers and what kind of accommodations make sense.

We are currently working on getting rooms scheduled for all of the meetings in 2012. So make sure to check the web-site or with the concierge for the correct room number if you are coming to a meeting. The first 4 months are booked and I will get the calendar updated in the next week.

In the meantime, have a great holiday and a peaceful, restful and joyous 2012!

December Meeting Reminder

Happy Thanksgiving!

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, December 3, 2011

10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

2650 Ridge, Evanston, IL 60201

Meeting Room G962 - 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.

November Meeting Notes - Coming Soon - And a request for help . . .

Just a quick note - Today's meeting was AWESOME! Some details will be provided soon.

A relatively urgent request is being made once again for young people with Narcolepsy and other sleep disorders who would be willing to reach out to other young people with Narcolepsy and other sleep disorders to please send us your contact information and let us know that you are out there and available. We receive requests for contacts and would like to have a running list of people who have already said that they are willing to have us give out their email addresses, etc.

To those of you who have volunteered in the past, or who have a parent who has volunteered you in the past, don't be surprised if you receive an email asking for your help once again.

Reminder - November 5 Meeting!

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, November 5, 2011

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2650 Ridge, Evanston, IL 60201

Meeting Room G962 - 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.

Farewell, Las Vegas . . . Look-out, Cleveland - Here we come!

The convention is over for 2011. The post-its are stuck in unusual places, peoples email addresses are on tiny slips of paper that we hope we haven't lost. New friendships have been forged and old friendships re-kindled. Lots of sleepy people left Vegas sleepier but feeling like they had found something that they never thought they would have. A community of people who understood what it was like to be "like me".
It was a very satisfying 3 1/2 days for both of us, my husband and me. He found a group of people who understood what it was like for him, living with a person with Narcolepsy. I found a group of people who understood me. Who validated me. Who made me feel like I wasn't such a weirdo. 
Maybe next year, when the convention is in Cleveland, the MNSG could rent a bus and go to Cleveland en Mass . . .

Conference Thoughts So Far . . .

Yesterday proved to be just as awesome as I had been told it would be. 
A brief synopsis of yesterday's seminars that I went to only represents about 20% or less of what was offered. There were seminars running in 4 or 5 rooms simultaneously for each time slot. I could only attend one at a time. My husband also attended some of the same and some different. He has been very impressed with the information offered and the people he has met. Here is a brief synopsis of the seminars I attended:

• Keynote Speaker - Narcolepsy: The Basics with Dr Eve Rogers - A very entertaining and down to earth view of the history of Narcolepsy. Dr Rogers will present another seminar each day of the conference. I look forward to all of them.
• Creative Writing Workshop I - A different approach to writing and finding the time for finding the creative you.
• Support Group for People with Narcolepsy - A HUGE group of people broken into about 4 or 5 smaller groups to discuss specific areas of interest from how your Narcolepsy affects your family to how it affects your work to the guilt you have when you need to rely on others for so much that you used to take for granted to dealing with Narcolepsy in your senior years (with Medicare).
• Working While You Sleep - A very informative seminar about legal ways of making money with little or no capitol investment using your brains and the world wide web. Something to think about for someone who needs money  but can't work in a traditional setting.
• Sustained Energy + Weight Loss Through Nutrition - **This one was postponed to a new time tomorrow so it gave my husband and me a chance to check out the silent auction and the "Creativity Corner" of contributions from PWN in one of the "sub-suites". There were beautiful paintings and handmade quilts and such for us to look at only, and a wide variety of items from jewelry to spa days to reduced price days at the hotel to time with a Life Coach available through the Silent Auction.  

A whole new set of seminars is available today and tomorrow. For today, I will be going to some combination of these:

• Advocating for Yourself and Your Health
• Performing Your Narcolepsy: Methods of Gaining Mastery . . .
• Forming a Successful Support Group
• Sustained Energy + Weight Loss Through Nutrition 
• Creative Writing Workshop II

FOOD FOR THOUGHT: If you aren't at the conference this year, remember that the NN does offer scholarships to help defray the cost of attending. You just need to fill out a simple (and I do mean simple) form. Think about it for next year. I don't think you will be sorry.

Welcome to Vegas!!

Very excited to be here at the Narcolepsy Network Patient Conference for the very first time! 
Arrived in Vegas as the sun went down over the mountains. 
Spent a LOT of time trying to find the rooms where the conference will actually be held. 
Spoke to several concierge's. 
For anyone who needs to know - the conference Hospitality Room is on the 23rd floor. 
We were told to use the Select Elevators next to the Starbucks, take them to the 23rd floor and look for room 23034. 
The conference itself is located in the tower on floors 103 and 104.
Looking forward to some great sessions today - I have selected:

• Keynote Speaker - Narcolepsy: The Basics with Dr Rogers
• Creative Writing Workshop I
• Support Group for People with Narcolepsy
• Working While You Sleep
• Sustained Energy + Weight Loss Through Nutrition

Will tell you how they go.

NOTE: Support Group did meet on Oct 1. Due to family emergency - webmaster and assistant were both absent from meeting. Will provide notes on meeting when available.

Picnic!

Thanks to everyone for coming out to our picnic on Saturday--we had a great time meeting you all and enjoying the warm end-of-summer weather!

Several of our members will be attending the Narcolepsy Network Patient Conference in Las Vegas next month (October 13-16). We have some conference veterans in our group, so if you have any questions about the conference feel free to send an email or call in to our next meeting. Or, better yet, stop by and see us in person!

Our next meeting is Saturday, October 1 at 10:30am--we hope to see you there!

Teen and Young Adult Shout Out!

If you are a teen or a young adult diagnosed with narcolepsy or another sleep disorder who is interested in networking with other teens/young adults with narcolepsy or another sleep disorder let us know.

We are trying to build a  database of email addresses of teens/young adults who would like to network with others with similar issues. We are still working on details for security purposes due to the age of the people involved but have had some inquiries about this and would like to see what kind of interest there is.

We would also appreciate a little bit of information - your age, whether you are a boy or a girl and a little about how/when you found out you had narcolepsy or your other sleep disorder.

Contact us at midwestnarcolepsy@gmail.com with email info for yourself as well as for a parent or guardian if you are under 18.

The next meeting of the Midwest Narcolepsy Support Group

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, September 10, 2011.

In lieu of our regular meeting
we will be having our
2nd Annual Midwest Narcolepsy Support Group
Family and Friend Picnic

2:00 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)      

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

Join us for food, friendship and sharing. 
Drinks and sandwiches will be generously supplied with funds provided by the Narcolepsy Network.
Please feel free to bring a side dish to share.

Contact Sarah DiDavide at sdidavide@hotmail.com  
or call/text her at 312-498-2381 with questions
PLEASE RSVP TO 
Sarah DiDavide at sdidavide@hotmail.com or to midwestnarcolepsy@gmail.com
so that we can make sure to have enough food and drinks
Here is the link you can use to help plan your trip:

http://www.lpzoo.org/plan-your-visit/hours-location-directions
We look forward to seeing you there!

Members Only Facebook Page

We now have a "Members Only" Facebook page at

Midwest Narcolepsy Support Group on Facebook

This is a place for you to go vent, share stories, recipes, anecdotes -  whatever interests you and you feel like sharing. This is a closed page so you must be approved to be in it and no one can see the posts if they are not in the group.

Just go to the page and request to join. Very easy. (The button to join the group is in the upper right hand corner).

The next meeting of the

Midwest Narcolepsy Support Group

is scheduled for

Saturday, August 6, 2011

  10:30 am - 12:00 noon

at

NorthShore University HealthSystem

Evanston Hospital

 2650 Ridge, Evanston, IL 60201

Meeting Room 1711 (by Frank Auditorium) - Evanston Hospital

 (ask for directions at the Information/Concierge desk)    

This Meeting will be an open forum discussion on living with Narcolepsy. We hope to cover the following:

1.     Discuss/review topics for future meetings

2.     Discuss whatever is on your mind concerning the day to day adventures of dealing with Narcolepsy

3.     Discuss the general business of continuing to grow our group

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

Join us, your input is invaluable.

July Meeting Recap

I keep promising myself that I will stop apologizing for posting information late, but this time I have an excuse. Usually this posting is done by the Webmaster Supreme. Our Webmaster did not attend the July meeting due to the fact that she felt attending the launching of the final Shuttle was more interesting (go figure) so, as assistant Webmaster the writing has fallen to me. I will spice up the post by including one of the on site photos of the launch before I go into the notes from our meeting:

Again, our conference line was up and running within 5 minutes of the meeting start time but we didn't have anyone on the line. We are not giving up and will continue to offer the call in number for those who cannot make it to the meeting. We believe we have left the bulk of our technical difficulties behind us and hope to have the line available with consistency on future calls. (Knock on wood).

The meeting was well attended and included some new members, some members from out of state and some members that we hadn't seen in a while. A suggestion was made that we somehow make email addresses and contact information available for those who would like to share that information at the meetings. We are working on a few ideas on how to accomplish this in the most efficient, least disruptive way possible.

Discussion this month focused on a few major areas of interest:

• Employment issues - especially in regards to disclosure of the fact that you have Narcolepsy or any sleep related disorder.
• One member related his story that he had recently started a new job and felt compelled to advise his new employer of his Narcolepsy. (Part of training for his new position included 2 weeks of classroom training involving sitting at a desk listening to an instructor or working on a computer - all tedious work designed to put anyone to sleep - but for a person with Narcolepsy it can be disastrous.
• He was very pleasantly surprised by his new employer when he was offered accommodations which included an additional 2-15 minute breaks daily (that is on top of his regular lunch and 2-15 minute breaks). Kudos to this forward thinking employer.
• The revocation of a members drivers license due to issues related to Narcolepsy. Although some members questioned the rights that a physician has to recommend such a drastic measure, this member felt that it was the right thing to do. Without the restriction, the patient felt that they might indeed drive when they shouldn't. 
• Most members felt that self monitoring worked well and most people knew when NOT to drive.
• Narcolepsy as it relates to histamines. One of our members discussed the fact that she has read about a relationship between histamines and Narcolepsy and asked if anyone else had noticed any symptoms. There was a lively discussion and considerable agreement that there did, indeed, seem to be a correlation. Below are some links to articles about this relationship.
• http://www.labome.org/grant/r03/mh/role/of/role-of-histamine-in-narcolepsy-eds-disorders-7186303.html
• http://www.modafinil.com/histaminenarc.html
• http://www.journalsleep.org/ViewAbstract.aspx?pid=27372
• The use of paxil in conjunction with Nuvigil to assist a member who could not otherwise take Nuvigil.
• One of our members had been having difficulty because all efforts to control her Narcolepsy had been unsuccessful. There seemed to be no medication or diet options that worked to make her function to a level that she felt comfortable with.
• Finally her physician prescribed a combination of paxil first ("until the hallucinations stopped") then take the Nuvigil. This rather unorthodox approach seems to have worked for this patient. Do not try this without physicians supervision. 
• Our Support Group 2nd Annual Picnic - September 10 in lieu of our regular meeting (location still to be determined)
• The upcoming Narcolepsy Network Conference in Las Vegas October 14 - 16
• Scholarships are available to assist members with registration fees, travel expenses, and or hotel expenses. For additional information check out the Narcolepsy Network website at http://www.narcolepsynetwork.org/news-and-events/conferences/narcolepsy-network-26th-annual-patient-conference/. You will find an application available for download.

Those were the highlights that I made note of. If anyone who was there has anything to add, please feel free to comment.

Our next meeting is August 6, 10:30 to 12:00 (ish). Hope you will join us.

July Meeting Reminder!

Our next meeting is coming up on Saturday, July 9.


The meeting will, again, be an open forum discussion on Narcolepsy and living with Narcolepsy. It is open to everyone-- patients and their support team members.


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


1-866-249-2022, passcode 4897648210#


Last month, our line was miraculously open at 10:30 on the dot. Sadly, we had no callers.

Please join us--your input is invaluable! We hope to see or hear from you all on Saturday, July 9!

June Meeting Recap

We had another excellent meeting this month and were very happy to see some new faces! Although we didn't have any callers on the phone, we were set up and the line was open at 10:30am--hopefully we'll hear from some of you next month!

This meeting was an open forum on narcolepsy, with some focus on diagnosis and misdiagnosis (a couple members mentioned a misdiagnosis of depression before they were finally able to get a correct diagnosis for narcolepsy) and discussion on what medications work for different people. We also talked about very serious side effects some of us have experienced after taking these medications and the patience and time required to find medicines that will work. 

There were some interesting questions regarding pregnancy and narcolepsy that we didn't really have answers for, so if anyone reading this has experience with narcolepsy and pregnancy, please tell us about it in the comments or send us an email and we can share your comments at our next meeting.

We also discussed the pros and cons of telling an employer about narcolepsy and the existing ADA protections for those with narcolepsy; this is such is a difficult issue that completely depends on each individual's circumstances.

Other topics included narcolepsy and driving, narcolepsy and shopping (!), and a study in the journal Sleep Medicine that found that poor sleep habits in children can contribute to aggressive/bullying behaviors. Good sleep is so important!

Our next meeting will be Saturday, July 9--we hope to see you there!

Upcoming Meeting: Saturday, June 4

Our next meeting is this coming Saturday, June 4.


The meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy. It is open to everyone-- patients and their support team members.


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


1-866-249-2022, passcode 4897648210#


Please join us--your input is invaluable! We hope to see or hear from you all this Saturday!

Recent Email Concern: When and What to Tell Your Employer

We recently received an email expressing the following concerns:

When is it appropriate to tell an employer (new or established) that you have narcolepsy? What if you can't make it through the day without dozing off at least once? Who should you tell about your narcolepsy, and what should you tell them?

This is a question that many people with narcolepsy struggle with, there are no right or wrong answers. 


For some of us, the need to make sure that our employer is aware of our situation is an overriding compulsion that demands that we provide explanations for our behavior (in 2004, when I was initially diagnosed with Narcolepsy, I got a note from my doctor to have added to my file in the hopes of preventing any repercussions if someone found me "sleeping" at my desk. Since then, that note has been lost in my file, I have been "called to task" for dozing off during meetings, etc. and in self defense have felt the need to request a new, updated letter to be added to my file at work. I have a new director who has challenged me to provide proof of my disability). 


Others fear that providing information of this nature is like offering an employer an "easy out" option if they find any thing unsatisfactory in our job situation.

There is anecdotal evidence on both sides of the discussion that would make either response reasonable.

Let us know what you think by posting your opinions here.

May Meeting Recap

First of all, I am so sorry for posting this so late! We had a great meeting this month--here's what happened:

We had a guest speaker, Ann Austin, with us via Skype. Ann is from the Sleep Disorders Research Advisory Board (SDRAB) at National Institutes of Health (NIH). She gave us an overview of what SDRAB does at the NIH and told us that they are currently focused on five major areas:

• understanding the biology of sleep, studying genomes and phenotypes and using that information to personalize medicine
• studying sleep receptors all over the body
• discovering the long term effects of sleep disorders on the overall health of patients
• disseminating their findings and information effectively
• training future researchers in sleep medicine

The group also discussed having another community picnic this year. We decided on Saturday, September 10 for the date in lieu of our regular September meeting. Once we determine the location for the picnic, we'll post the information here and add it to the MNSG calendar.

Thank you very much to the Narcolepsy Network for providing funds for support group picnics again this year!

We had a few technical glitches this month with the call-in line and with Skype, but we were up and running by about 11am. Apologies to all those who tried to call in while we were setting up and missed us! We hope to see you at our next meeting, Saturday, June 4.

Upcoming Meeting: Saturday, May 7

Our next meeting is this coming Saturday, May 7.

We will have a guest speaker, Ann Austin, who will discuss the Sleep Disorders Research Advisory Board and the National Institutes of Health (NIH). Ms. Austin will talk with us during the first half of the meeting and the second half will be for open discussion.

Hope to see or hear from you all this Saturday!

New Conference Phone!

The Midwest Narcolepsy Support Group would like to purchase a new conference phone to better serve our members who call in to our meetings. The current phone situation is not ideal and varies from a conference phone, when available, to a kitchen phone or, in a pinch, a cell phone.

The phone we want to purchase is the Polycom SoundStation2 Expandable Conference phone (currently $435 on Amazon) and the Polycom SoundStation2 Extension Microphone Kit (currently $130 on Amazon).

If you would like to help us purchase this new phone and microphone extension kit, we've installed a PayPal button on this post and also put one in the sidebar. Our goal is $600 to cover the cost of the phone and any associated fees/shipping/etc. Once we meet our goal, we'll take the PayPal button down.

Your support is greatly, greatly appreciated! Thank you so much!

April Meeting Recap

What a great meeting yesterday! 

We had an interesting discussion on the phone with Dr. Freedom about some of the challenges found in diagnosing narcolepsy with inconclusive MSLT (Multiple Sleep Latency Test) results. For example, how to diagnose someone who presents symptoms of narcolepsy, such as cataplexy, but who either doesn't sleep or doesn't fall asleep fast enough to "pass" the MSLT. And one of our members shared a fantastic resource from the American Academy for Sleep Medicine that can help you find a qualified sleep center in your area: SleepCenters.Org

Our members shared some of their experiences dealing with forgetfulness and memory loss. According to the National Institute of Neurological Disorders and Stroke (NINDS), one of the symptoms of narcolepsy is memory lapse. This is a common thread with our members who have narcolepsy and we had a very informative talk about different coping methods for various kinds of memory lapses.

In addition, one member discussed some information found in the Narcolepsy Network's booklet "A Guide to Understanding Narcolepsy":

some prescription medications, primarily those containing opiate- or opioid-based painkillers and over-the-counter antihistamines may have paradoxical or opposite effects in people with narcolepsy, particularly those who are hypocretin-deficient.

(A Guide to Understanding Narcolepsy, Narcolepsy Network, page 18)

This was particularly fascinating because other members with narcolepsy have also experienced adverse or opposite effects to these medications. Those present who had read this booklet found it extremely helpful and informative. As far as we can tell, the Narcolepsy Network sends this booklet with its membership packet after you join, so if you are interested in joining the Narcolepsy Network to get this booklet and all the benefits of membership, here's the link to join.

Finally, we discussed what topics and speakers we would like to see at future meetings, such as:

• Nutritionist/dietician to talk about healthy eating and narcolepsy
• Life coach for people with chronic illness to talk about living with narcolepsy
• Procrastination and organizational skills
• Updates on clinical trials and/or pharmaceutical advances

If there is anything else you would like to see at future meetings, please let us know in the comments! If you have ideas about who could talk to us about any of the above topics, please let us know in the comments or by email.

Welcome to the new home of the Midwest Narcolepsy Support Group!

One of our primary goals has always been to reach out to those who have been diagnosed with Narcolepsy or other sleep-related disorders, as well as to those who have not yet been diagnosed, but who are looking for information. We are here to share and offer support.

This site is a work in progress. We will be adding features as the need becomes apparent or as they are requested. So, take a look around and let us know what you think! How can we make this a better place to help you with what you need?

Subscribe and you will receive notices when new information is posted regarding meetings, events, etc. If you are already on the email list for the Support Group and you subscribe to the website, please let us know how you would prefer to get your notifications.

And, again - 

Welcome from the Midwest Narcolepsy Support Group Steering Committee!