ALS: Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s Disease aka Motor Neuron Disease. In 90% of cases, there is no identifiable cause. About 10% of cases are familial, or genetic, in origin. I didn’t know a whole lot about ALS – except that it was fatal – before October 2013, when we began to suspect that what Mary had was not MS after all. Our worst fears were realized that Friday night in December when the phone rang and the doctor said, “It’s ALS.” It was confirmed by a second neurologist on December 19, 2013. We were told she would have two to five years. But that was before we realized it was respiratory onset, which meant that the nerves that died first were the ones controlling her diaphragm and allowing her to breathe. Respiratory onset only occurs in about 1% of ALS patients (PALS). Mary thought being rare meant she had a better chance; I knew it shortened her life span. I really didn’t understand what the next 22 months would bring, and it’s probably a good thing I didn’t.
