Origin Story

November, 2020

My friend Carolyn the Poet suggested that I describe the diagnostic journey to ALS Land. Because hopefully precious few of you will have any experience with the long march of uncovering neuronal degeneration I agreed that now was as good a time as any to share this part of the trip with you. So here goes.

As you read this, keep in mind that this wretched disease is very difficult to diagnose. It is not super unusual for ALS to go undiscovered for more than a year. It’s no wonder that significant research focuses on finding biomarkers for this disease. Diagnosis is a process of elimination subject to more tests and wrong turns than your first year of college.

In late January 2018, my annual finger probe, aka physical, was unremarkable except that I had lost a few pounds. I ascribed this to my new breakfast regimen of steel cut oatmeal. I didn’t know at the time that increased metabolism is a symptom of ALS.

In May we went to visit daughter Katie in the Nation’s Capitol. Getting on one of the mile long escalators in the DCMetro, I managed to trip. Nothing unusual because I am at base a clumsy oaf. Throughout May, however, I began to catch my right foot with increasing frequency falling in front of all manner of people in all manner of situations. Notwithstanding, the farthest thing from my mind was degenerating motor neurons. I didn’t even know what a motor neuron was.

Because the fun just wouldn’t stop, I went to see my trusty doctor. After discussing the matter, we both agreed that the culprit was my right knee with the already operated meniscus. As luck would have it the practice had just added a new doctor who was experienced with the latest injectable knee therapies.

Showed up on the appointed day and time and needles were armed and ready. Because she had never seen me before, she decided to perform a quick examination. Her face showed that what she saw was not delightful. “I don’t think it’s your knee. I think it’s your spine.” Wonderful. Off to my neighborhood imaging center to slide into the MRI machine.

The MRI is a white chamber of claustrophobia that sounds like a high decibel hangover. It wouldn’t be my last visit. Looking at the images with the Doc confirmed her suspicion that the spine was amiss. Off, she says, to the spine surgeon.

Surgeon is a real nice guy and goes through much the same examination. Orders up a nerve study but suspects a potentially impacted nerve where the spinal issue was identified. Go to the neurologist for the study. This consists of shooting electrical current through your motor neurons to see how they respond. I get zapped for about half an hour or so and then we’re done.

It’s late July early August and the surgeon wants to fuse two of my vertebrae leaving a hole through which to snake through the nerve we’re trying to save. He says I’m lucky because the study shows that all my other nerves are in good shape. I tell him I want to read up on the procedure and would call him when I was ready for takeoff. Because this procedure was going to make my spine look like a tinker toy project, I wanted to know what I was getting into.

Time for a second opinion. And a second segment to this story. See you for part 2, same bat time same bat channel.