Monday, September 30, 2013

Family and HKPP

This has been a wild month, y'all. Sorry I've spent so little time blogging. I expect the next two months to be even crazier, but I am going to try to keep things updated here.

BIG news on the HKPP front...my mom is acknowleging that she is a carrier of the 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. Wow. WOW.

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. Mom's father also displayed symptoms. He would frequently lie on the couch and "act like he was dying", and insist that he couldn't get up. Then later, he would be up and around again. Everyone said he and his mother were 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.

At this point, I'm waiting for Mom to contact the cousins, both of whom have mentioned "Fibromyalgia" type pain and limitations so severe that they have lost quality of life. I've never met them, but I hope they will be willing to accept the information I send their way. With a 50/50 chance of having the condition, well...let's get real here...you know it just about has to be HKPP. I was misdiagnosed with Fibromyalgia myself when no one could figure it out...that's the go-to condition these days when doctors get tired of searching. So anyway, I hope I can connect with these relatives, at least long enough to share the facts. I pray it's helpful to them and their future generations.

The PPA Conference is less than 2 weeks away...I can't believe it. I hope I'm feeling better than I'm feeling at this moment, because I'm currently laid up in bed, weak and in a great deal of pain. I really need to be in decent shape for what will be a busy weekend of seminars and socializing.

Talk to you soon.