I have no particular authority, I'm just offering whatever I can to facilitate progress. Recognizing I'm just one voice, in a peaceful international army of thousands, I suffer no inflated sense of self-importance and require no personal attention.
I'm simply passionate about this work. It's not enough to repeat what's been done. I'm not competitive, I'm collaborative and more interested in learning. I have an incurable brain disease that almost requires a PhD to understand, and know I must stay active in all realms to thrive. If you're living with such challenges, you know the drill.
Managing Parkinson's takes a lot out of you!
My intention is to help change the face of Parkinson's. Inspired by Anders M. Leines and his _This is Parkinsons_ project, I'm focused on what I am able to contribute to our community. I'm not afraid to step into the spotlight, but for brief periods, and ONLY if it promotes education and progress.
Walking in the footsteps of giant activists, I've been basking in time with our PD family. It's not easy to travel- though it sounds glamorous, for PwP it can be rough. I've been invited into homes and lives as if I were family.
Thank you Andy Butler, for making this trip happen, and for all you do. Every day with PD is challenging enough- so the capacity you've all shown in this success of Parkinson's Eve is astounding!
Omotola Thomas, Genna Douglas, Gaynor Edwards, Robin Buttery, and all who so graciously gave me tours or tried teaching me how not to be a clumsy American (good luck)- Thank You!
I'm fortunate to have some time with a sagacious and brilliant Professor, as we film candid talks on what's next in advocacy- as in how to avoid our own mythology and ego's hype in order to work toward a useful legacy within our international community.
Burnout rate: HIGH. Activism and advocacy is time consuming and all-encompassing. Our families are forced to share our scarce time, and may feel they aren't prioritized. In our fierce intentions to enact change, we've been reflecting upon how this affects everyone around us.
Parkinson's isn't easy to be around, nor are it's cruel effects predictable. Thank you to all who love and support a PwP! I'm so grateful for all the support that has made this trip happen.
Home soon. See you in Kyoto, and likely Grand Rapids too! 🌷