I’m often asked what it feels like to have Parkinson’s disease. My answer? Just plain weird. As frequently as I’ve tried to explain it, I just can’t do it justice.
One of my early motor symptoms was gait freezing. I’d be walking along, and suddenly, it was as if my foot were bolted to the floor. It was the strangest sensation. I’ve been walking most of my life! Why couldn’t I do it now? It was also unsettling because it wasn’t happening every time I tried to walk. It came and went.
Before my diagnosis, my husband and I would joke about the “hitch in my giddyup.” It didn’t hurt; I wasn’t in pain. I just couldn’t make it go away. It seemed silly that a 35-year-old with pretty average health would lurch along like that. But in reality, it was kind of scary.
Not only would I get stuck mid-stride, but even when I could make my feet go, it was as if I were walking underwater. I couldn’t move my feet faster than an odd, slow-motion pace. And it wasn’t like when you’re running and can’t move any faster because you can’t get oxygen. It was like an invisible force that I couldn’t escape.
Trying to describe a freeze
Getting stuck like that was the strangest experience. I’ve described it many times as my mind and my brain getting into a fight. My mind, the conscious thinking part of me I could control, would say, “You have taken thousands of steps in your life. Your legs know how to make it happen. Bend the knee, lift the toes, take a step.”
Then my brain, the deep nerve center that usually takes over when you do routine tasks like walking, would just say, “No.”
My mind knew that I had joints capable of moving. I knew that my leg was capable of supporting my body weight. I knew the mechanics. My mind would be screaming, “You can walk!” and my brain would answer, “No, and screw you!”
I’ve always been the “smart kid” in class. I work with my brain. I’ve never been much of an athlete, and my identity has always been tied to my ability to think things through logically and come up with solutions. But I couldn’t outthink Parkinson’s disease.
Parkinson’s can be so frustrating and isolating because unless you’ve experienced this crazy battle between your mind and brain, you can’t understand. Words fail to convey the fear of no longer trusting your brain to navigate you safely across a room. My mind would want to go someplace, but my brain couldn’t get me there.
When I got stuck, sometimes my husband’s automatic reaction was to give me a nudge or a tug on my arm, which seemed helpful. But in truth, it was terrifying because I felt so rooted to the ground that I thought I’d fall over. I had to learn a new language to tell him and others how to help me.
Eventually, medication and deep brain stimulation surgery would help tremendously. I walk much better now and rarely get stuck. But no one could have prepared me for the weirdness of having young-onset Parkinson’s. And I’m sure my words can’t express its reality, either. But just know, you’re not alone in this fight between your mind and brain.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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