Stephen Finger, diagnosed in February 2013 at age 36.
At the beginning of 2013, my wife Cara and I were slowly pulling ourselves out of the fog. James was approaching his first birthday. He was born about 20 months after his sister Mary Adair, so we finally felt we were moving from the pure scrambling stage, back into some sense of normalcy. The only thing left was for me to get my hands checked out. For a year or two, I had noticed my hands getting weaker. It started on my left and then moved to my right. Nothing major, but sort of annoying. Little things I did on a daily basis like buttoning little dresses, unlatching car seat buckles, opening champagne bottles, had become more difficult than they should have been. Within a couple of months I went from thinking I might have carpal tunnel to being told I had a uniformly fatal neurodegenerative disease.
After being diagnosed with ALS, Cara and I reconsidered our situation. The reassuring thing was that we were happy with our life. She likes her job. I enjoy teaching at the University of South Carolina. We have two happy and healthy kids who require all of our attention, but in the best way possible.
Facing the future is incredibly scary. I don’t know how long I will be able to walk or how long I will be able to talk. I don’t know when my wife will lose her husband. I don’t know when my children will lose their father. However, a year after being diagnosed, we are incredibly thankful that I am doing much better than we thought I would a year ago. My symptoms are still mostly limited to my hands, arms, and shoulders. I can still take the kids to the zoo by myself. I can still sit and read stories or work puzzles or play legos. Right now my limitations are incredibly small relative to the love we share as a family, the laughter we share as a family. We have faith that as a family will be able tackle what comes.