This month's featured chat host is TASmali. Mali joined TAS early in 2000 after Dr. Jim and I were invited to tour the Stanford Sleep Disorder Center. With TAS still in the development stage, she assisted in the early days as our marketing liaison as well as being one of our very first narcolepsy chat hosts when the web site launched. Mali is a true sleep disorder patient advocate and has one of the most compelling narcolepsy stories I have ever known. Mali and I have teamed on occasion to share our patient stories at the podium to patient groups. Hearing her tell her story is a riveting experience. You may have seen Mali on television as she has been the subject of more than one documentary feature about narcolepsy and cataplexy. Although extremely well versed in all sleep disorders, her experiences living with narcolepsy makes her a valuable and much appreciated part of the TAS team. - Tracy Nasca, Vice President, Talk About Sleep
We asked Mali to provide her story:
I was fortunate to have met Tracy and Bill Nasca when Talk About Sleep was in it's formation, prior to the start of the web site and the chats. My own life circumstances allowed me the time to help with some of the initial content and planning of TAS. When the first chat software was up and running my co-host TASshazz and I started what is now a long 8 year history of weekly Narcolepsy/Idiopathic Hypersomnia chats. It has been my extreme pleasure to have been a part of TAS and I consider the people I have grown to know through my involvement, as friends.
Unlike most people with narcolepsy, I was quite fortunate to have been diagnosed rather quickly after the sudden on-set of severe symptoms at the age of twenty-two in 1984. It was my episodes of complete loss of muscle tone that oddly occurred in humorous situations that caused me to first seek medical help. Yes, I had been experiencing profound sleepiness, but I easily explained this sleepiness away due to my being a new single mother who had just started a stressful job. I assumed that anyone who was "burning the candle at both ends", as I was, fell asleep often. Now that I look back, perhaps I should have recognized that falling asleep while talking on the phone, while eating a meal or even tying one's shoes went beyond normal. If I just kept moving and didn't pause I felt I could keep going, it was those weird, sudden collapses that seemed to occur out of nowhere when I was enjoying myself that led family members to insist that I see a doctor. Within months of the first appearance of my symptoms, at my first doctor's visit I left with a diagnosis of narcolepsy/cataplexy. My case was considered "text book".
My strong type A personality, along with medications kept me highly functioning. I had a successful career in finance that I enjoyed for a number of years. Later after a number of promotions I moved from Oregon to California for a new better job. It was at this time of my life, when away from the support system of my family that my narcolepsy symptoms "got the better of me" and I resigned from work. At the time that I resigned I thought that "a couple of good weeks of catching up on my sleep" would be all that it took to get me back on my feet. I do believe that when we are at our worst, we are not really able to see how difficult things are and this was certainly true for me. I was having hypnagogic hallucinations and sleep paralysis multiple times every night. I had many episodes of cataplexy each day - now triggered with even more benign emotions not just laughter. It was after leaving my job that I was fortunate to have gotten involved with Stanford's Sleep Center and clinical trials for a new drug for cataplexy, later named Xyrem.
Xyrem, for me, gave me my life back! My severe cataplexy had only gotten worse over the years and this new medication helped control my cataplexy to an extent I hadn't imagined was possible. My sleep paralysis and hypnagogic hallucinations nearly disappeared and I also found that my daytime sleepiness improved. It was during this time that I had the pleasure of first being introduced to the Nascas and Dr. O'Brien.
It was during my most difficult times with narcolepsy that I was fortunate to find support from others with narcolepsy and other sleep disorders on-line and in person. I very much enjoy being able to help provide that support and guidance to others when they visit TAS.
I currently work full time as the Clinical Research Coordinator at the Stanford Center for Narcolepsy. I also serve on the Board of Directors of the Narcolepsy Network as well as hosting a weekly TAS chat with TASshazz. Please stop by and say hi in our Monday night chats.