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.

Tuesday, October 1, 2013

Family and HKPP

Big news from my corner of the world. As of this week, my mom is finally acknowledging that she could have this condition, and wants to try the diet restrictions to see if her symptoms improve. We also believe she has two cousins with HKPP, and she plans to contact them for more info.

Anybody who knows what I've been through my entire life with this disease, and specifically, what I've been through with my mother, knows how huge this is. I've traced it back to her paternal grandmother, based on stories about her bizarre sickly behavior and random periods of being bedbound having to be waited on because she was weak. Mom's father also displayed symptoms. He would frequently lie on the couch and (quote from a relative) "act like he was dying, just like his crazy mother did". He would insist that he couldn't get up, but later he would be up and around again. Everyone said he and his mother were just lazy and crazy, and he even spent time in a mental hospital. How horribly sad that my grandfather and great-grandmother suffered like this and nobody believed their misery was real.

Waiting now for my mother to contact relatives. I'll keep you posted.