The Life and Death of Aleksandr Batutenko
Periodic Paralysis International has published Alexander's story. Side note: I called him Alexander based on the translation I was given when I met him on the PPA listserv, and he never corrected me. That's why I spell it the way I do.
Sorry it took me so long to share the link.
His wife Nadia and their children remain in my thoughts, and I hope to meet them at the Periodic Paralysis International Conference.