What are the basics of life? For most of us, breathing and eating are high on the list. Put gravity on there, too.

Most people with ALS will die of respiratory distress. Breathing muscles stiffen and stop working properly and it reaches a point where even mechanical ventilation cannot sustain life.

Mechanical ventilation?

A ventilator. A breathing machine. I have one. My version of ALS is called respiratory onset. Breathing muscles— diaphragm and related accessory muscles— are affected first and that causes breathing difficulties.

Respiratory failure is common in the advanced stages of amyotrophic lateral sclerosis (ALS) and is the major cause of morbidity. In contrast, it is rare that ALS presents with respiratory failure as the sole initial manifestation

I use a ventilator more than 22 hours each day.

That means I breathe on my own— with difficulty, as breathing muscles tire out quickly, begin to cramp, and then cause pain— while eating a meal, taking a bath, or during a TeleHealth call.

Yes, COVID has changed how health care works.

Which comes first? Breathing? Or, eating? And what happens when ventilator use hits 24-hours a day and there is no time, off the ventilator, to eat? Or, go to the bathroom?

I’ll let you know. I’m getting there.