reflections

Facebook post from July 11, 2020

Last year I was diagnosed with Young Onset Parkinson’s Disease. I had been to a variety of specialists, peddling a variety of symptoms, for a few years prior, and not one of them had a clue because no one is looking for PD in a forty year old. But I persisted, certain it was all related. I’m grateful for my neurologists who finally connected the dots and have led my team ever since. I never stop reading and learning about my condition, and, armed with a list of symptoms which will serve as my bingo card as this develops, I realize this has been quietly with me a very long time.

So, this morning as I was inexplicably drawn to Facebook Memories for the first time in ages, I saw that I am at a milestone day here. 10 years since a mysterious nerve discomfort was noticed and aggravated by a weekend of casual video gaming. I am now quite familiar with that arm nerve discomfort. For a while I would announce his arrival to my wife. “Pedey’s about,” I would say. But he’s since moved in permanently with us and she simply knows. I can’t imagine the emotional, helpless toll that must take on her everyday.

I didn’t ever post my diagnosis here until now. It’s never been a secret amongst people I see in real life, and some relationships have grown stronger with those who are willing to talk. I have been fed up with FB for the same reasons as all of you, and typing is a lot harder for me now. But this Memories post inspired me to plug away at this for an hour. I possibly will begin to include my PD reflections with the others I usually think worthy of posting, not for pity (as the original post jokingly requested), but because transparency is my watchword. So far, we’ve done a good job of facing this with humor and gratitude. My wife is my biggest supporter as anyone who knows her would expect. She ribs me just the right amount and I laugh the hardest of all. It’s given me a chance to cherish all the activities that I can still do, and has authorized me to slow down and enjoy those that are legitimate forms of physical and neurological therapy (origami, piano, woodworking, yard work, gardening, among them), all while observing (but not judging, as my yoga instructors say) those activities which are only going to become more challenging. It’s really weird to think that this is as good as it will get for me, by true definition of “degenerative”, but I am doing all I can to slow its progression and foundations are raising money for scientists to perform research.

In all that’s wrong with the world right now, you’ve got to try to stay hopeful or you’ll lose your mind. Right? That’s what we’re supposed to be doing these days? Right?

The sun’s out. The birds are chirping. And I’m loved. That’s where I’ll place focus today.