I'm An ALS Educator

I must be feeling better. I've tried eating hospital food and drinking hospital coffee, only to realize how truly bad it is. I'm not out of the woods yet. I still have a low grade fever with an ongoing headache. While the doctors have ordered to removal of my IV, including antibiotics, I'm still very tired. I'm not sure if it's the infection or just plain old ALS. It's kind of a Hobson's Choice.

It's been interesting dealing with the nursing staff here. Many of them have little or no experience with ALS patients. My nurse last night confessed that she has only ever seen one other person with ALS, and it was right after she was diagnosed, so she could still walk, although unsteadily. I remember those days. sadly, and sadly.

When she started asking all kinds of questions about how ALS affected me, I became an object lesson for her. She observed the paralysis in my legs and asked what happened when I roll over. So I showed her by rolling over. She said "Your legs just flop." And I said "Yep, that's how it works." Then I showed her the muscle wasting in my thighs, where it is most obvious. She saw the size of the remaining muscle and commented that I must have been a strong man before ALS. If she only knew.

Today it's another nurse, or another orderly, or another Patient Care Aide, what they call orderlies here. Someone is going to wonder what ALS is. Someone is going to ask. Even people in the medical industry don't know very much about this illness. Nor did I before getting it, but you would expect people in the business should know.