I went to my ALS clinic on May 11. My breathing numbers are getting low, but my doctor told me to ignore them. “They don’t mean as much as you think they do,” he said.

“Then why do you tell me what they are?” I asked.

That day, we ordered a cough assist (because coughing and blowing my nose are hard for me), and a Bipap machine—the Trilogy 100—because I didn’t want to find myself in a position where breathing was difficult and I wasn’t prepared.

Three days later, I was back at the clinic. I’d been reading to Scarlett that morning when I felt difficulty drawing in a full breath. I knew that I was not going to suddenly drop to the floor, unconscious, but I was uncomfortable. At the clinic, the doctor told me that what I was experiencing was 20% a breathing problem and 80% a panic problem.

“You’ve probably been thinking a lot about your numbers,” he said.

I had. When you find out that your breathing muscles are weakening, it’s really very different than dealing with weakened arm muscles. Both suck, obviously, but only one makes you feel like you’re in a dangerous situation.

“You’re not in a dangerous situation,” my doctor said, and I could tell that he was right—for the moment. I had gotten nervous, the recent clinic news a loop in my brain, a reminder that I have a disease that only gets worse. But I was safe, and my assistive breathing devices were on the way, supposedly being rushed. Read More>