Chapter four: What the heck is ALS?

Note: this is my simple understanding of a complex condition. Please consult a physician for accurate details and resist the temptation to rely on Dr Google, who will scare the shit out of you. 

So…… ALS is a progressive, incurable disease that involves the degeneration of nerves. When the nerves stop functioning, they stop activating the muscles. So the muscles die. Sometimes the initial symptoms are as simple as tripping, or twitching - even a single finger or toe. Other times the “bulbar” system is involved. This means that speech, breathing, and swallowing are affected first, with a prognosis even worse than Dr Google might imagine.

This is the situation we are facing. Speech is almost gone. Breathing becomes difficult with the slightest exertion. Hand function is declining rapidly, with the fingers curling inward.

And yet - he shows up in his wheelchair when it’s time to be a greeter at church. He goes to work four half-days a week. And every time I pick him up, his first question is about his daughter. How did she do this morning? Was she happy? Is she ok? (Does she know that I love her? Will she remember how much I cared?)