This was not a diagnosis - I only saw this particular neurologist for about 15 minutes as the final part of the trial. It was just a suggestion from her - she thought perhaps I should look into it further.

She told me it could be caused from even a tiny amount of damage that may have happened as a baby. She mentioned being delivered by forceps as one of them. Or having a difficult delivery, or more obviously - being dropped on your head as a baby or being in some sort of accident.

She ran down that list of causes while staring at my face, and I said I had been delivered by forceps. My mother would never admit if I had been dropped on my head!
She said the reason she asked was because of the asymmetry of my face, and my left foot is a little smaller than my right. She also mentioned something about my winged shoulder.

I'm going to mention it to my neurologist and see what he thinks. The Dr said the good news is people who really have this progress at a much slower rate. She said they usually have it their whole lives it just becomes apparent in the 3rd or 4th decade of life because of aging. It may be subtle or may not show much because you kind of "grow" into it as you age...If that makes sense. Or, for some - the atrophy may really be apparent. I guess just like regular PD, this one is different for everyone too.

Definitely need to check on the MRI's for brain atrophy. I don't remember that ever coming up. I asked this neuro about the DaT Scan, because I've had a positive one too, she said the DaT scan would still show dopamine loss - because the damage is causing dopamine loss. It's still Parkinson's, just a different form.

Anyway - I walked away feeling like I had learned something new.