ne night in November 2018, I fell while crossing a street in Subic Bay, a U.S. naval logistics station in The Philippines.
My face whacked the asphalt. Lying in the path of oncoming traffic, I couldn’t move a muscle. After 45 seconds of terror, I was able to stand up and haul myself to the other side.
Six months later, after dealing with symptoms like my left leg buckling unexpectedly and being extra tired hauling my tools around on the job, a doctor told me I had amyotrophic lateral sclerosis — a 100% fatal disease. “What’s going to happen?” I asked. “You’re going to be paralyzed,” he said.
At the time I was a 59-year-old father and husband. My work entailed climbing down stairs and ladders to work on the bottom of ships, repairing propellers and hydraulics, and climb up them to fix controls on the bridge. As my condition worsened, my doctor told me, “It’s not safe for you to climb ladders.
You need a new profession right away!” I swallowed a 50% pay cut to work part-time in the office. Six months later, I couldn’t drive safely to the office, and was terminated from my job. Within a year of my diagnosis, the only way I could get around was with a powered wheelchair.
Then I needed breathing machines, and found myself fighting a continuous battle to find and retain in-home care providers. Available drugs didn’t do much to help me. And since I was well into my diagnosis after one clinical trial, I wasn’t eligible for further clinical trials.
What cou.