It is late, and I need to sleep, but I needed to report that my med holiday seems to have helped some. I took my amphetamine today for the first time since the morning of December 30. While I did not feel a significant improvement in its effectiveness, I do think that I was more [...]
I arrived safe and sound (other than my ridiculous sinuses continuing to produce infected mucus) at the Minneapolis/Saint Paul airport about 4:30 PM CDT. I hope my live blogging from the last session that I saw (Dr. Faraco) captures how cool I think her and Dr. Mignot’s research is. After that ended, though, my life [...]
The keynote today is Dr. Juliette Faraco, who is an associate of Dr. Mignot. Dr. Mignot had a last minute conflict, thus Dr. Faraco is presenting his research to us. She begins with a basic primer on DNA and the characteristics of the cell. She also provides a brief explanation of SNP (single nucleotide polymorphisms [...]
Invariably, I was tired enough last night that I managed to “miss” my second dose at 2 AM. I did take it at 3 AM , but between that and my overexertion yesterday, I did not drag myself out of bed until 9:05 AM – after the first session started. Apparently, Dr. Rye of Emory [...]
I have only been to two Narcolepsy Network national conferences, but the opening fun tonight BLEW AWAY last year’s Friday night. The planning committee had conceived of the idea that we should have a sing-a-long with “re-writes” of songs, making popular tunes have lyrics about narcolepsy. I had glanced at them only a little before [...]
I spent my afternoon helping with conference set up,. Although I did more than I had planned (and possibly more than I should have done), I greatly enjoyed seeing various PWNs who I first met a year ago. The true blessing of a conference like this is that people with a chronic condition like narcolepsy [...]
I had an excellent time today going to look at crafters. Unfortunately, my wife was too ill to join us, so my daughter and I ventured out alone. We needed to exchange a shirt at the aquarium first, which was also an excuse for my daughter to get an awesome funnel cake (it looked like [...]
The hour is late. We just got home from the set strike from my daughter’s play. Technically, my wife and I got home just now from set strike; my daughter just got home from the cast party. Today was an insane whirlwind of activity. After having the first full night of Xyrem after three days [...]
I rarely post twice in the same day, but I needed to write this immediately upon returning home. My daughter was amazing. The entire show came together phenomenally well, but my daughter’s performance took my breath away. Her acting already has impressed me in the past, but what she did on stage tonight blew my [...]
In the cosmic ebb and flow of my life, I knew a day like today was coming soon. Last night, for the third night in a row, I did not make it to my bed until “today” (meaning post-midnight). While it is summer, and I do not have looming deadlines, I can ill afford to [...]