What I wish I would have known before I was diagnosed...

First, I wish I would have known sooner. I wish someone could have explained what was happening to my body and my mind. Some clear clues to shed light on the unexplainable. A link to make my words and odd reactions make sense. I wish I would have understood a lot of things. I wish…

I wish the world was a different place. I wish I didn’t have this ailment that affects my face. 

The loss of face. The four words that start the term most professionals use for a loss of facial expression or facial masking. 

Yet the ‘loss of face’ is also seen in some cultures as a falling from grace. Signaling shame. It’s interesting how the same words can have different meanings depending on who is using them. I wish I’d known how different kinds of trauma affects a person as a whole. Not just people with PD. EVERYBODY! I wish…

Parkinson's disease is the fastest growing neurological disease on the planet. The reasons feeding into that hard to swallow fact are endless. This is no joke. I also wish I had known the facts about toxic chemical exposure. Like many of us I spent years failing to hide my symptoms. Or cover them in blanket terms like ‘I’m just a clutz’ or ‘two left feet’. Dangerous tales that included jokes that go back to my childhood. My dad often said I tripped over cracks in the sidewalk. In a place where the ground moves as much as California. In truth, I often did. 

Early childhood balance issues. Repeated adolescent head trauma. Young adult lymes disease. Persistent social isolation as an adult. I wish I had known how all of these things contributed to years of undiagnosed confusion. I wish…

Yes, and I wish I would have known much MUCH earlier how a diet, specifically a gluten free diet, and exercise could ultimately set me free. Not from PD. Because we haven’t yet found the secret combination to do that. Finding the right diet is how PD helped me find a road towards a healthier me. Still. I wish…

I wish the cure was here today. Or perhaps yesterday. Those long years so many of us had no choice but dismay. Crying to doctors, family and peers asking. ‘Please isn’t there another way? 

Hope is on the horizon. Ending Parkinson’s disease 2 is on its way. With it more action to take. I hope it will inspire more to stand up and say. We the people with PD demand to have our say. 

I wish I knew so much sooner that it was true. Yes, and I share my stories to help find a cure that is new. In that book there is a lot of truth to be told. Our stories are important. To make change we must stand up and be bold.