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.
No comments:
Post a Comment