Hi All! My name is Sandy Bernard. Tim, I completely relate! I was diagnosed with Narcolepsy in October 2009. I also have a strong support group but it has been a journey as I realized that I needed to educate those closest to me. I would enjoy meeting as a group.
Sent: Sunday, March 03, 2013 9:19 AM
Subject: [central ohio sleep disorders] Narcolepsy Support Group
Good Morning everybody! My name is Tim Whaley. In December 2012, I was diagnosed with Narcolepsy. I am fortunate to have a strong co-worker and friend support base, however, no one can totally understand what I am going through, unless they have Narcolepsy themselves. What I am proposing is a support group specifically to talk about and address dealing with Narcolepsy. What I'd like to know is how many of you out there would like to be in a support group that would be a relaxing, safe place to discuss issues, maybe have an occasional profession talk with us, pass along information you have read or researched...discuss the pros and cons of XYREM and other medications...there are all kind of possibilities...wouldn't it be nice to just TALK and get some comfort with others dealing with what you are dealing with? Let me know! I will be retiring from public service at the end of the month, so I will have some free time to pursue this idea...I look forward to some feedback.
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