Long term illness

The problem with a long-term illness is that it is, well, long-term.  Days, weeks, and even months go by without any significant changes or mileposts that could indicate improvement or (dreadfully) deterioration. For instance, I have Parkinsons Disease.  I was diagnosed six years ago and have long ago come to terms with the idea that I’m never going to be “cured” from PD.  I have had and may still have ups and downs But Parkinsons has become a fact of my life.

The swelling (edema) in my throat especially the wind pipe, which sent me to the hospital twice earlier this year now Is likely to become a long-term illness.  This week I had appointments with my throat surgeon and two consultants concerning the long-term course of my problem.  Their short consensus "lower your expectations and you won't be disappointed:. Apparently my throat is showing some progress but not as much as we all would hope and it is premature to operate further or pull out my trach tub and G tube. I definitely have a passage through my windpipe so we're making progress. That means I'm in a "safe place" that should keep me from another crisis admission to the hospital even if the throat edema should start acting up. Basically all the doctors said the best course of action is "wait and see". Timeline: expect as much as a year and don't be surprised if that gets extended indefinitely.

As one of my friends told me when I said that I just want to get back to normal, "Face it, Arnold, for you this is the new normal."  So any time you want things to get back to normal all you have to do is define the current situation as Normal!