Special Thanks to Caregivers and Care Partners
Put simply, we "Parkies" owe our caregivers and care partners a big shout out/mad props for all they do for us. Sometimes, these two words seem mechanical, like we’re just repeating a line, but other times, when it comes from inside, it's special.
Whether we’re emotional speakers, greeting card givers, or post it on social media types, it’s a good thing. Put simply, saying, “Thank you. I really appreciate X because Y” goes a long way.
Sorry about the algebra.
Now for my thank yous.
The CEO of my brain (my wife Heather)
She gets a front row seat to my troubles. Only I see more than she does, and sometimes, she sees what I’ve compensated too much to notice. She gets to be on the living will, and when PD really comes down, she’s going to be the Major In-Charge of Field Operations. From the tears my diagnosis caused to taking charge of our financial future, she’s there. She laughs with me and at me. That’s okay. Humor is everything. She stayed true to her marital vows where some “dodge the bullet.” She may not think she’s gotten WWE tough, but she has. Then again, she’s a Great Lakes Gal. They’re raised to withstand winds, waves, and the Indians World Series failures to be special.
The trustees of my brain (my parents)
My parents are old school. They’re 70ish, and they come from a world that existed before our psychology was adjustable through chemistry, much less talk about it. It’s not easy to have a child with a diagnosis, but to have one who is “100% out” regarding his Internet presence can be a lot. By coming to grips with my diagnosis and treatment, they support the passion in my writing and my advocacy. Additionally, listening to a person with diagnosis talk about taking his meds, like he was talking about choosing pizza can be hard to hear with regard to sickness and side effects. Yes, it’s not easy to “normalize” mental health issues and incurable, progressively degenerative neurological disorders, but my parents are on-board for the duration.
The shareholders of my brain (my friends, family, and coworkers)
People learn quickly how they can ask me anything. I’m an open book. By inquiring about me, this forces people to acknowledge "the elephant." It also helps when people don’t have to worry about what they say and how they say it. They can offer suggestions, read my writing, and send articles, or just wish me well. Also, I like to give and receive compliments. Yes, I’m sure it’s hard for them to go from talking to the guy they hung out with or worked with in early days to become a guy who is academic and expressive about his condition, but they have witnessed this. What’s more, they have seen (many of) the jerkish qualities vanish as I mature and atone for my past. That means something.
All of the above
It’s encouraging to think about how everyone special gets my dream. These people see a person who speaks in written voice to people across the world. They understand the book is coming. When it's in front of them, they still want to be a part of the audio, video, writing, images, and opportunities to help others. Inspiring people to embrace People First Lives isn’t about being a part time social justice warrior, but rather it's about contributing to community/family/future full time. They see how this condition, the Mothra of the disability kingdom, is inside of me, but they know there are other King Ghidorahs, not to mention King Kong and Godzilla. These beasts can strike anyone at any time. Here, they know how standing up with one person is standing up for all people.
I couldn’t be prouder of them.
People on the outside
Not everyone will get me, but some will. I’m not here for haters who are going to hate or the already converted. I’m after the fence sitters. Soon, thunder will rage. Lightning will strike. Waves will crash. Avalanches will crash down. My caregivers have reached out to impact those people with their story or my life. With that, they cycle will spin around again.
It’s not always about the big things. Sometimes, it’s just about being respectful.
I am humbled with thanks for how my team has stepped to the plate.
If that’s your team, too, then tell them they're special! If your team needs to see things differently, let them know what helps. That said, be respectful. They’re in the trenches with you 24/7, and that’s not an easy thing. Trust me.
Do you think there is enough awareness of Parkinson's disease?