It seems there are some who feel that early DBS provides longer[?] better[?] benefits. If we wait till we are too old, it won't help as much. I can see how you would be surprised at your neuro's comment. Mine brought it up years ago and I thought, "no way".

Boann, I waited 7 years after diagnosis and 10 years after the first appearance of symptoms to start sinemet. I've been on it for 7 years and can get very dyskinetic. But i just recently changed my dosage and am back to working with 25/100s and have found that I still have some control over getting dyskinetic.

So yes you have it right - life becomes about operating your machine's movements, which increasingly includes the mental fog that reduces you to some bumbling vocalizations that used to pass for speech and thought early in the morning.

paula