Most of you know that I was diagnosed with Narcolepsy in 1996. I was diagnosed after the symptom, cataplexy began occurring regularly. What a relief that my episodes of weakness were just a cataplexy and not something more serious!
Anyway, I have participated in studies in the past to support research for Narcolepsy, and I am trying to become involved again. Stanford's Center for Narcolepsy Research asked me to list people who have witnessed and could describe my cataplectic events. I could only think of my mom, Chris and Sommer as three people that have identified what I look like when these episodes occur. Many have witnessed them, but they must think that I just look that way when I am laughing or whatever the stimulus is that sets them off.
Anyway, am I missing anyone? If so, would you be willing to be contacted to describe what you see to a researcher? Anyway, now you should all be scrutinizing me at future social meetings...they happen all the time, and I do my best to cover them...but Chris notices EVERY SINGLE ONE.
So I just looked up "cataplexy" on youtube, and I just want to say that anything you see on there is not what happens to me! It is the same thing, but I don't suffer that severity. Usually, it happens to me when I laugh hard.
3 comments:
I wish I could remember better than I do! (I guess that was almost 10 years ago that we spent every day of 2 months together!) I do have a very vivid memory of walking out of the bookstore at the MTC near the copy center and as we headed down the 3 stairs there, we were laughing about something and you completely collapsed. Elders walking by were stunned and thought you had just tripped, and I had no idea what to do as you had warned me of the condition. You recovered rather quickly (thank goodness!), but I don't think I will ever forget that incident. Except that I don't really remember the details of what your face actually looked like as it was happening....
i remember when you fell off of the bus in valencia...
He he... you fell of the bus?? we're you hurt?? hope not! You'll have to tell me that story. The only one I witnessed was at the auction. I was teasing you for that random leg kick and you said it was a cataplexy. Other than that... nope.
I will pay better attention when you laugh!
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