If Parkinson’s has taught me anything, it’s that your brain is in charge of everything. So when you start to have trouble getting the right balance of brain chemicals to transmit the right messages between your neurons, some weird stuff is gonna happen.
I’ve often described the experience of having Parkinson’s as an argument between your mind and your brain. I think of the mind as the conscious part of your thoughts, where you make plans and decisions. So, your mind might instruct, “Hey, let’s walk over there and pick up that book on the shelf.” But your brain responds, “No! And screw you!” Okay, maybe not that mean. But when dopamine, one of the two most powerful neurotransmitters in the brain (the second being serotonin), isn’t available to properly carry messages across the gaps between neuron receptors in your brain, that’s what it feels like.
When I was first being diagnosed, I remember telling the doctors that I would sometimes be walking across a parking lot or down a street and all of the sudden I would stop dead in my tracks, as if I had forgotten to pick up my next foot after the previous step. Or I would be walking and no matter how much I thought “Go faster, go faster!” I couldn’t. Not because I lacked the cardiovascular capability, but because I just couldn’t seem to think my feet into moving more quickly.
As my disease progressed, at some moments when my drugs weren’t working well, I’d get stuck and be unable to take a step forward, no matter how hard I tried.
There I’d be, standing in the middle of a hallway or an office, and my mind is saying, “You’ve taken a billion steps in your lifetime. You know your legs are capable of motion. You know they can support your body in an upright position. You know where you want to go, and nothing is in your way.”
But in that moment you simply can’t make the connection to signal this intention to your feet. This would happen especially when walking through doorways, or when there was a change in the flooring surface or pattern. It was like my brain was processing these flooring changes as barriers; where walls met door openings, carpet met wood, or a design in a tiled floor came into my field of vision. My body would simply refuse to respond.
So I learned some tricks to get moving again. I would sing or count. I would swing my bag next to me and “steal” its momentum to get my body moving.
I would have friends and colleagues (and more than a few startled but kind strangers) stand beside me, and on the count of three take a step with me, and then I could get going again.
It was as if my dopamine-deprived mind had been shouting, “Take a step!” while the neurons in my brain were ignoring the command. But then my neurons saw something or someone else move, and they would recognize that cue and reply, “Oh, that? Yeah, we can do that.”
Knowing how frustrating life could be even when I was on my medication, I was extremely anxious about one particular phase of the testing to determine if I am a deep brain stimulation (DBS) implant candidate. (Check out my last blog for more details.) It was the on/off test. You go off your meds for about 10 to 12 hours, then you go into the doctor’s office and do the standard battery of neurology evaluations; tap your fingers, touch your nose, tap your toes on the floor, etc. (When I say that for as much as we know about the brain, we know nothing about the brain, this is what I mean.) The height of sophistication in diagnosing PD and many other neurological disorders is basically like the standard field sobriety test they give drivers pulled over for DUIs. Then you take your meds, wait for them to fully kick in, and do the tests again. As I mentioned in my last blog, the “window” that doctors look for as the ideal time for patients to have DBS surgery is when you’re getting significant impact from your meds and haven’t lost cognitive ability. The on/off test is to document and quantify that medication impact.
It sucked. But it wasn’t as bad as I’d feared. I usually take medication every four hours, and I hadn’t been off medication for more than maybe eight hours in nearly six years, and that was when I was asleep—not getting dressed, getting in a car, and going into a doctor’s office. I had heard that for some people it was extremely hard, because they saw for the first time—in a long time—just how far their disease has progressed, which can be daunting. I felt pretty awful, but even my doctor said I was actually performing better than I had on medication at some of my initial appointments. (We both think this is because of the boxing and additional physical activity I’ve been doing. I’ll post more about exercise soon, since I firmly believe it’s the silver bullet for PD.)
When I left the house with my husband the morning of the test, I used a walker to get myself to the bathroom, down the hall and the stairs, and out to the car. I then used a wheelchair to maneuver through the hospital to my doctor’s office. It was humbling. But I could do it. My husband noted that I was able to shuffle fairly quickly with the walker and asked, “How do you feel?” All I could say was, “Awful.” He asked me to expand on that, but it was hard to describe.
Some people call Parkinson’s “the shrinking disease.” I certainly felt it that morning.
I wanted to curl into a ball and not do anything. My eyes felt too heavy to open. I’d think of things I wanted to say, but the effort to move my mouth and lips to form the words seemed like way too much to do. And although I was hungry, the idea of picking up a piece of a granola bar and chewing seemed hardly worth it.
Yet on the way home I not only felt much better, but I found myself filled with an overwhelming sense of gratitude. Sure, this disease sucks. But imagine if I’d had it ten years ago? Fifteen years ago? Or twenty-five years ago, when my grandfather was diagnosed? To have experienced that brief “off” time made me so thankful for my medicine and my doctors and my friends and family who have supported me. And I’m blessed to be able to think that if I’m approved for the surgery, even my “off” times will be so much better than I’d felt that morning. It’s still scary, and there’s a long way to go. But there’s so much to hope for as well.