A friend once told me that their family seemed to gauge all time relative to her husband's heart attack. They moved after the heart attack. A child graduated from high school before the heart attack. A significant life event can become a "time fulcrum." An ALS diagnosis certainly becomes such a fulcrum. Unfortunately, to doctors and researchers, it is more of a "time chasm."
Worse yet, if a person with ALS is lucky enough to be accepted into a clinical trial, more chasms appear. There are clues that already exist on both sides of the big chasm that are ignored. The clinical trial gathers its own information and doesn't look back.
These time-and-information chasms can and should be bridged. There was life before ALS. There was a medical history before ALS. There is information. ALS is a mysterious disease. Why ignore the clues?