"You don't look sick."
"I just danced with you, and you seemed totally fine...?"
"But weren't you OK just a couple minutes ago?"
Yes to all the things people say, but these opinions and observations are missing THE FACTS of this disease.*
YOPD (Young onset Parkinson's) is a most unpredictable and confounding condition. We take nothing for granted, especially not the precious times when the medication works, when we get to enjoy "normal" levels of activity. (This varies for each PwP, and has a lot to do with treatments and timing.)
If you happen to notice someone with Parkinson's get quite big, seeming a bit wild, and then get really small again in the same day, it's because we are anticipating the Cinderella thing.
Like Cinderella, our time to enjoy public spaces is limited. We know that it is pain and locking up and falling and dyskinesias that come for us - not the glittering smooth chariot. Our time of mobility and simple fluidity is up at Parkinson's whim. We'll likely limp or crawl home from the gala where things felt sparkly, and we could pretend neurologic disease is not a thing, for a few glorious hours.
A brilliant ad campaign from the UK. We all take turns being models for Parkinson's… and none of us wanted this, so thanks to everyone who steps forward to tell it like it is. When we share our stories, we humanize a disease that most don't care about, unless it affects them directly.