Sunday, April 3, 2011

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.