After dinner, I fell off the couch. I tripped on the strap of my backpack that was under the coffee table when getting up to get a glass of water, and down I went. My glasses crunched at my head, my shoulder crushed into the rug, and my floor suddenly kissed my lips without my consent.

Up I go. Off to go for an inadvertent run.  My body flings itself across my house, feet in a shuffle rapidly increasing in speed. This has a name: festination. I think of it as my feet having a festival, as a way to remember the word. The festival is being held just in my feet and is not very well coordinated. The musical acts are all off-key, and the attendees are not happy. The countertop is my endpoint, I slam into it and stop myself from my careening dance across the apartment.

Two nights ago, I dreamt of eating a cupcake. It was light and fluffy-looking, vanilla, creamy-colored cake with rainbow sprinkles on the side. But so dry when I took a bite. Strangely dry, and feathery. As I slowly woke up, I realized I was chewing on my pillow.

After the not-so-delicious cupcake, I dreamt that Russia had dropped nuclear bombs, just small ones, on Yale. My dad, in the dream, said yes, unfortunately, we were going to war. My mom doubted that my small device to measure air quality actually worked. I yelled at her face, “Yes it works! I did my own research!”, thinking in my dream that I was only half mocking the Trump supporters who said that same thing.

I wake up from the dream a bit terrified, grateful that there is no war, yet thinking of the California fires and the nuclear-like devastation of Pacific Palisades. I try and push my body to turn over in bed. I can’t quite do it. I need to wake up my hips first, so I wobble them back and forth, feeling their pain and stiffness. I command my arms to push my body into a cobra position, but at first, my arms say no. This conversation is every morning. I ask, sometimes I get a first refusal, sometimes, I hear nothing at all. Just a blank space until the arms, fingers, and toes decide to change their mind and listen to what I am asking them to do. My feet are quiet and yelling at the same time. I have trouble making out the words coming from the screams of pain as I take my first few steps in the morning. I mincingly take a step or two, fall into the door frame, catch myself, and launch myself to the bathroom. I play a version of parkour on my walls, bouncing back and forth with my arms to take some weight off my feet while supporting myself until the fascia can loosen its grip on my soles and I can walk with a bit of assuredness in my step.

This essay is not about Parkinson’s disease. This essay is about what happens to life when life keeps hitting you upside the head with Parkinson’s which is part of every hour of every day.

Meanwhile, what can I do? What do I do? I drive to work. I take care of three cats and a dog. I raise my daughter. I do the best I can at my job. I support my friends. I type this on my computer. I don’t do anything on my own.  This is not independent living. I am so very much dependent on many to try and keep all these balls in the air before they hit me in the head.

Rebecca Miller, PhD, has attended the WPC as a participant, committee member, and/or presenter in 2013, 2016, 2019, 2023. She lives with Parkinson's disease. She is currently Associate Professor of Psychiatry; Director, Peer Support & Family Initiatives, CMHC at Yale School of Medicine.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®