PD Revelation

The nature of recovery from Parkinson's is not what most people would assume. One major way in which that's the case involves what is and is not visible to an outside observer. Most people, including doctors, assume that to assess the progress of someone trying to recover they need only look at changes in visible motor symptoms. (Of course nearly all doctors hold fast to the medical establishment dogma that any effort toward recovery is in vain.) Yet those are barely the tip of the iceberg. For someone actually navigating recovery the great bulk of recovery goes on inside, invisible to an outside observer. Visible motor symptoms may not change much over a given period despite great strides in progress happening internally.

I recall a particular occasion when pause turned off for me. This was of course a great step in recovery. Yet my tremor remained and was perhaps even a bit amplified from sheer excitement. Joyfully I said to my wife, “I still have a tremor, but I don't care!” I felt so good inside that it vastly outweighed the tremor, the tip of the Parkinson's iceberg. Of course I knew as well that once pause stayed off long enough the tremor and other visible PD symptoms would subside over time as recovery symptoms came and went.

JH elaborates on some of the real stuff of recovery (RFP, 2020, p. 366):

Recovery from Parkinson’s is tentatively happening when your mind even fleetingly starts to enjoy parasympathetic mode again: you start to laugh more and don’t care so much about what others think. Recovery from Parkinson’s is happening when you start to realize it doesn’t matter or not if you are vulnerable, or not as perfect as possible, and that it’s just fine if someone makes fun of you. These are the earliest changes that show a person is recovering... The invisible changes, not the improvements in motor function, are the ones that prove you have turned off pause and are in the process of healing.

And poignantly...

... Even when your motor function does begin to improve, most people ... might only notice that your motor behaviors still aren’t “perfect.” ... These people might have no idea what your real symptoms were: the mental symptoms of living on the verge of death; being outside of your body; being numb to your own heart feelings; and they have no idea how long this has been going on. They assume you were fine up until your motor function started to collapse after decades of having been in a mental state of emergency that you can no longer maintain.

I guess it's not surprising that the best measures of progress in recovery from Parkinson's are not what people would assume. After all, the very fact of recovery from Parkinson's clashes happily with what most people assume!