Quote:
Originally Posted by EnglishCountryDancer
I do not know what average progression is.How well are most people after 3 years,6 years,9 years etc. As P.D does seem to be a syndrome it is difficult to get an answer.My husband has had a tremor in his right(parkinsons side) foot when excited or annoyed for over 25 years.Was this Parkinson's?How do we judge his progression rate,how do we judge each one of us?Is there a norm against which we can judge ourselves?
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I think that is just the point - there is no norm because PD is not one disease.
Even what my doctor told me, that I could plan on another couple of decades of being active with PD, was an educated guess - there's no long term documentation. But there was no reason for her to believe that I would begin to progress at a different rate than I have for the 14 years since my tremor first appeared. Nor did she think that I would begin to acquire other symptoms after living so long without them.
Seems to me, the designation of Benign Tremulous Parkinsonism can only be made several years after initial PD dx, as longevity of tremor without other symptoms is part of the definition. It's nothing I could have known or prepared for as I started on the PD journey. Believing at the outset that "maybe I'll only have a really bad tremor and never experience many of the other symptoms that are PD" would have seemed unrealistic if not downright nuts.
I think my doctor has the right idea - labels are not as important as treating the symptoms of each individual person who walks through the door. There's a more nuanced approach to treating PD than just throwing more sinemet at it.
The lesson for me is more psychological - start living my life without the fear of losing my life to things that haven't even happened yet, and might not ever happen. It's hard for me to do.