Feel very bad for Jiri. I lost my old man when he was only 56 years old when he succumbed to AML Leukemia. He was diagnosed around Halloween 2002 and passed away just after new years 2003 after going through horrific chemotherapy to prepare for a bone marrow transplant. It was really shocking how he could go from playing men's hockey and in what seemed to be great shape to passing away in less than 3 months time. Unfortunately, he never got a chance to meet his two grandsons, but his legacy lives on in me, my brothers, and my sons. My oldest who is 8 now(in my avatar pic) even sports #9 in soccer for his Grandpa, who was as big a Wings fan there ever was and idolized Gordie Howe growing up playing river hockey in Detroit.
My heart goes out to you T.Lowe & your family. Since you are younger & still physically fit, with the exponentially increasing advancements in technology & medicine there is ever increasing hope of slowing the progression in the future. Hopefully your progression will mirror that of Stephen Hawking, who this year will mark his 50th year since he was 1st diagnosed with ALS. I wish you the best.