“The way I see it, if you want the rainbow, you gotta put up with the rain.” — Dolly Parton.
One recent morning, I woke up shaking. More like vibrating, actually. The sensation reminded me of the 25-cent “Magic Finger” bed that I tried once in a motel. Except that the bed wasn’t moving and my husband couldn’t see me shake.
A subsequent chat with my neurologist confirmed it: “internal Involuntary shaking of the hands, arms, legs, jaw or tongue. The typical Parkinson’s tremor is “pill-rolling” – it looks like holding a pill between thumb and forefinger and continuously rolling it around. Some people report an internal tremor, a shaking sensation inside the chest, abdomen or limbs that cannot be seen. Most Parkinson’s tremor is “resting tremor,” which lessens during sleep and when the body part is actively in use.”, not unheard of among Parkinson’s patients. Another day, another symptom.
It’s an adventure, checking each day to see what I can no longer do, or no longer do properly, anyway. I wake up wondering what quirky trick my body will be playing on me. Something glaring? Something subtle?
The first symptom, a few years ago, was being unable to put on slippers. Right foot: into place with no problem. Left foot: well, it was as though someone pushed the pause button. My foot just hovered over the slipper, frozen.
A few weeks later, I noticed that my left arm stop swinging when I walked. My left elbow was always bent. And of it’s own accord, my left hand was forever making a fist, Bob Dole-style. It seemed that my body, particularly the left side, had a mind of it’s own.
Over the course of the next year I saw several specialists, ultimately ending up with a diagnosis of Parkinson’s Disease.
I wanted to know exactly what to expect, but found out that Parkinson's patients are like snowflakes, each one is unique. Not all of us have the familiar tell-tale “pill roll” tremor. I don’t shake; not visibly, anyway.
For me, Parkinson’s is exceedingly frustrating. I was an elementary school librarian for years. I love to organize, love to make order out of chaos, love everything in its place, love predictability. So, never knowing what to expect each morning is annoying, to say the least.
Relief from medication is not at all consistent. Same meds, same dosage, taken at the same time every day, equals: different results each time. It’s a roller coaster.
So, how do I cope with each new twist and turn? Well, being slightly deluded helps. I was shocked when my husband suggested I get a handicap placard to hang in my car. I certainly wouldn’t qualify I protested! The speed with which my neurologist agreed to sign my application, when I broached the subject, was a real eye-opener.
Being slightly forgetful helps too. Once, I wondered: who is that vaguely familiar woman I see reflected in the plate-glass window at the mall, tilting forward and shuffling when she walks? And why is she wearing the exact same outfit as I am?
And sometimes I just have to laugh at the irony of carrying a card, kindly provided by the National Parkinson Foundation, which states: “I am not intoxicated.” This is what I get for being a teetotaler my entire life?
I attend a local, monthly, Parkinson’s support group. Friendly people with handy hints on getting over the hurdles we face. But, mostly I just muddle through on my own, continually startled by new developments, and then adjusting to them.
My goal is to keep moving. To keep going for walks, keep doing anything but sitting motionless, anything but stagnating - literally and figuratively.
It’s a little bit daunting to face the future, face the unknown. However, I’m not shaking in my boots. Of course, even if I were, no one would see it. They never do.