I HATE PARKINSON’S DISEASE AND ALL OF THE STUFF IT BRINGS WITH IT! I said stuff but know I was thinking of another “S” word I worried might insult some folks. You are welcome to use whatever word works best for you in your situation. Over the years I have posted lots of positive comments on the wall behind my computer. Things to make me feel better and keep me motivated in the moment. This one is a new one and it is going up as soon as I finish writing this blog.

It’s not an original thought, Connie Carpenter Phinney, CarePartner for her husband who has had PD for more than 20 years, opens her workshops by having everyone in the room yell “I hate Parkinson’s!”. When my husband and I belonged to a local gym that specialized in Rock Steady Boxing for PD, one session had us throw balls at a wall and call out the reasons we hate this disease. As a CarePartner I hear regularly, it’s okay to be mad at the disease just don’t take it out on your loved one. I just want to say that there’s a lot of hate that has built up over the years and it’s DOGGONE hard not to let it come out sometimes! Again you can replace the “D” word with one of your own, whatever works for you.

Getting upset, however, doesn’t do much good. In fact, it is harmful for me to let my emotions flair so I am trying to come up with alternative actions. Waiting until I explode isn’t the best plan, the moment things start to escalate is the best time to act. If I recognize what’s coming I can slow my breathing, refocus my brain and remind myself that whatever he is doing, it isn’t intentional. Taking a physical step away can separate me from the anger and allow me to find compassion instead. Then later, when I am in a better mental space, I write in my journal. My words rail against the disease that is ravaging my husband and destroying our lives. I say all those things I had to bite back in the moment because I know it’s a safe place for me to express my feelings. Sometimes I go back and read what I have written, more often just getting it down is enough. Then I am ready to put the smile back on and move back into the role of loving CarePartner. That’s who I want to be for my husband and what he deserves after all.