Wednesday, October 23, 2013

I came, I saw, I went to the conference

The Periodic Paralysis Conference was on the 11th-13th of this month. I had a bit of trouble as I was ill with digestive issues the entire time, even throwing up in the car on the way there. I had a hard time hiding the fact that I was sick and miserable throughout this thing, but I survived.

I also ate anyway. The food was good. And I caught this amazing sunrise:


It was nice to meet several people from the online support groups. I loved meeting friends from Ohio, Colorado, North Carolina, New York, The Netherlands, and Ukraine. Alexander's wife was there and she spoke about the Periodic Paralysis community that has formed in her part of the world as a result of Alexander's work. I'm so happy that I was able to talk with her in person, it was the highlight for me. I admire her strength and her willingness to speak out about this condition.

Several physicians, including the top researchers in the world, were in attendance. I learned from all of them, and I appreciate the time and effort they put into this event.

I didn't quite make it through Saturday, and had to bail about 20 minutes early. I rested for a couple hours, and was back up and around for a small dinner.

Sunday, I could have easily shown up in my pajamas...ha. I was very tired. My tolerance of the lights and sounds and walking through the massive hotel and just sitting up in general was nearly to the limit. I was trying hard to take in the information that was being presented, but it's all a blur. I can only hope to God I didn't come across as obnoxious when I opened my mouth. That would certainly never be my intention, and I appreciate those who were patient with me.

I had bloodwork, and I look forward to hearing from the doctors in Germany in a few months. I am also sending off my 23andme kit soon. I'll report back when I get the results.

Road trips are very difficult for me these days, and being sick with my stomach on top of that really took a lot out of me. I wish I had felt better and connected with people more, but I considered myself lucky to be there to begin with. I was on my own at the hotel, and I didn't want to press my luck. Last thing I needed was for my muscles to melt down. They held up about as well as I was expecting, maybe a little better. I'm grateful.

I've been a bit down since arriving home. I returned to some drama, which definitely hasn't helped. I am hoping my circumstances will change for the better in the near future.

I will compile the notes I took at the conference (it wasn't much...too fast-paced) and provide some links to presentations as soon as possible. See you then.

1 comment:

  1. I am waiting for DNA testing for this condition. I've been ill since 2008 though I now realize that milder symptoms began previous to that and I kind of ignored them making excuses for why this and that -- you know must be my age, my thyroid, blah, blah, blah. Anyway, I have tested through 23andMe previous to finding out about periodic paralysis. I'm assuming 23andme doesn't test all the related genes so just wondering what information you have about 23andme and which genes are pertinent as far as that testing goes. I want to look at mine and see if it shows anything since it's going to be a bit before I get the actual testing done. Hope you feel better soon. I totally get where you are coming from. =) Kristen

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