2006 Narcolepsy Network National Conference in Dallas, Texas: Summary and Highlights

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The conference was totally awesome, an experience I will never forget which has deeply inspired me in my creative venues.   Finally, a social gathering when it was completely acceptable to say, "I'll see you later, I need to nap first!"  A gathering where everyone was your friend, I believe there's no such thing as a completely heartless, mean narcoleptic, as I've yet to find an unfriendly one!  Alice was a perfect roommate, and I miss all of you already.  I really want to go to San Diego next year, and my husband and I plan to make a road trip out of it spanning 2 weeks!  The conference sessions offered covered many different interesting topics that it was often hard to choose which ones to attend!  I really pushed myself, and boy did I pay for it (N symptoms got bad) and I crashed with back to back sleep attacks for a couple days when the conference was over.  I just didn't want to miss a thing! 

 

For those who were unable to attend and/or are interested, here is a summary of notable highlights, from my point of view.

 

Dr. Siegel from UCLA presented about a study he performed which investigated immunosuppressive treatments to narcoleptic dogs when they first began to show symptoms of N, but before they had developed all the symptoms.  What he found was that suppressing their immune systems did in fact prevent the full tetrad from forming.  One could hypothesize that giving this treatment to a teen or young adult first showing EDS, esp. with a familial history of N, could prevent the other symptoms from forming.  This is of course, under the assumption that N is an autoimmune disorder.  Once the majority of our hypocretin producing neurons are dead and gone, there is no turning back, because they don't regenerate.  There are several bad side effects from the immunosuppression; however, which makes it a far ways from ever being used in humans: smaller stature, dogs had different color coats, and developed Cushing's disease.

 

Dr. Siegel also studied how hypocretin neurons functioned in the brains of normal rats.  He found that whenever a positive emotive event occurred, that they fired, essentially preventing cataplexy from occurring.  Results indicate the next step in treating N and all its symptoms would be in the form of hypocretin.

 

Please write your congressmen, senators, etc to encourage funding for more research into Narcolepsy treatment.

 

Dr. Naiman's presentation provided an alternative approach to coping with Narcolepsy.  He suggested working through our dreams and twig light states (HH, cataplexy, SP, etc.) using lucid dreaming and interpretative techniques to better live with N.  He believes sleep and dreaming is extremely undervalued, with dire consequences in modern western societies, esp. USA and Japan.

 

He brought up several interesting points, that we dream less as we age, and how cancer and depression are highly correlated with a loss of dreams.  He believes dreams are very important to our overall health, and suppressing them will rebound in the end.

 

Nicole Eugene, a fellow narcoleptic, wrote her master's thesis about the cultural politics of sleep and sleepiness and how the views of sleep have changed over time.  Very interesting, how sleep and dreaming was once revered as the only way to gain true insight and knowledge, and following the enlightenment, as not alive, non productive, and a waste of time.  As Narcoleptics, we are treated with meds to keep us awake, to fit the western norm of alertness and productivity, as our symptomologies are seen as lazy, unproductive traits. She explored how sleepiness vs. alertness exists and functions as a system of power in our society, just as race and socioeconomic status do in our patriarchal society.

 

In the young adults support group: Narcoleptics self defined, we wrote letters to Narcolepsy and imagined what Narcolepsy's response would be.  From what I gathered, all of us felt that Narcolepsy had robbed us from living life to the fullest in several ways:  it just invaded our lives with out any invitation, makes us chronically sleep, afraid to even feel emotion, and causes us to retreat with in ourselves often as a result.  However, Narcolepsy has provided us with a most unique experience; we have a much more mature developed sense of empathy for others, which resemble one of someone older than 20's and 30's.  We have very unique experiences living our lives with Narcolepsy that no one else could ever experience.  If we are untreated and find your joke completely hilarious, there's no faking it, we often fall down! Narcolepsy has become a fundamental part of our identities and lives, and it is difficult to imagine how are lives would be without it for many.

 

I was unable to attend the writing workshop with Linda Black, but I did meet her and listen to some of her poetry, and the lady has got some fierce talent.  She uses her experiences of living with narcolepsy to inspire her poetry!  She encourages us all to use our narcolepsy experience to inspire our creative venues.

 

Adult Support Group: Sexuality and Intimacy with Narcolepsy

 

Wow!  Where else could you get 50 narcoleptics in one room talking about sexuality/intimacy issues!  I haven't laughed that much in long time!  We weren't laughing at each other, but with each other, because, BOY could we relate to one another!  To keep it clean on this bulletin (you can email me with more detailed questions, if you like) topics included:  arousal problems with cataplexy, how Xyrem helps with those problems, and consent issues with Xyrem. 

 

The Texan Square Dance was a blast!  I'm a Dallas native, and this is where I finally learned to square dance!  What fun and a great work out! 

 

The Narcolepsy Expressed was absolutely hilarious fun!  All present were allowed to give mini performances expressing their life expiries with Narcolepsy.  Performances included reciting of original poetry written by participants, an original rap song performance; Dorothy from the Wizard of OZ had N "Somewhere over the Rainbow" sing a long, and the telling of our funniest cataplexy stories.  I did a re-enactment of my funniest cataplexy moments:  sleep study clinic falls; the secret word is pomegranate, etc.

 

The stay connected through the internet presented several venues, including narcolepsy myspace groups, Talk about Sleep, and the N-list, to keep connected and get advice all year long.

 

I also attended the brain donation session, where we learned how to donate our brains to Stanford/UCLA once we die, to further the research of narcolepsy.  It only took the brains of 4 narcoleptics to discover the hypocretin cell loss as the cause of N.

 

There were several other sessions, I was unable to attend due to schedule constraints and need to nap. 

 

They included sessions with pediatricians about childhood/teen narcolepsy, how to fall safely when cataplexy happens, breathing meditation techniques, Laughter Meditation (laughing through cataplexy), children's writing workshops, and support groups for family and friends of those with N. 

 

 

I hope this summary informs and provides you with a good idea of this years NN conference in Dallas, TX.

 

 

Sweet Dreams with no SP, HH, or Cataplexy,

 

Fellow Narcoleptic,

Rachel



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