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.