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Sharing Stories: A Note to My Friends About Parkinson's
By Peter Gall
My family and I traveled widely during my journalistic career, as far afield as Moscow and Singapore. We did a good job of staying in touch with you and other friends we made along the way. But my retirement in Minneapolis coincided with a diagnosis of Parkinson’s disease (PD). In the early years, it did not affect my social life much. But as time went on, my gestures became more exaggerated and my gait more awkward.
What to do? I did not want to lose you and my other friends right at the time I needed you most. I did not want you to be apprehensive, either. So I decided to write this letter, to reassure you.
Parkinson’s is really a collection of symptoms, not all of which are exhibited in every case. Most of them have to do with our inability to control our personal locomotion system. We command our brain to take a step, and the brain responds, “Good luck!” One PD friend falls so often that he routinely wears knee and elbow pads.
I have fallen only a few times over the past year, but I frequently get frozen in place. At times, I have had to stand in the middle of a dark room until my brain (or my wife) was able to release me.
And when we do move, we sometimes find ourselves starting by taking tiny stutter steps that look like a bad tap dance. My wife is always calling out “Take big steps!” Other symptoms include rigidity, flailing of arms and, in my case, a clenching of muscles in my legs.
Tremors, a symptom shared by all of us, are an early PD sign. Sipping soup can be a sloppy challenge.
Though the degenerative disease itself is incurable, its symptoms can be alleviated by an array of drugs and surgical interventions. We talk of being “on” and “off”, like a light switch. When on, following a dose of my prescribed medication, I can do many of the things that I have always enjoyed. When off, I can be a real mess. For one thing, I am weaker, so I find myself needing support from my wife, from a waiter, or from a nearby friend.
Every three hours my timer sounds, and I take my pills. These wear off before the next ones kick in. That can mean a wait for at least 40 minutes in off position. I try to schedule big events for the times when I know I will be on. While off, I will read a novel, nap or watch TV.
If you see me lurch, it is not the devil drink; it is the PD that has disturbed my balance. That same PD also weakens my confidence that I won’t misstep, or fall and hurt myself and others. I will go up an escalator but not down, for fear of pitching head over heels.
A particularly distressing feature of PD for many of us is that our memory and other cognitive skills may fade as the disease progresses. I’m now in the category known as “mild cognitive impairment.” We are urged to keep verbal skills alive by doing crosswords and playing complex board games. Battle Ship, anyone?
The side effects of PD drugs run the gamut from drooling, to “neurosensory problems” (pain), to depression, to hallucinations. (I used to have a llama visiting me nightly, until medicine sent him packing.)
But not all PD treatment is pill-popping. One effective non-medicinal measure is exercise — in my case, swimming. Exercise helps to counteract the weakness apparent during off periods. It can also help ease the tightness of muscle and tendon that bedevil most of us.
One thing I have found is that attitude counts. We seek out friends and groups that can help to keep us as “normal” as possible. Fortunately, my friends have a good sense of humor, as well as the strength to help me out of a deep, soft sofa — or a deep funk! Thank you, my friends; I can tell that llamas at midnight and people stuck in doorways hold no terrors for you!
Mr. Gall is a writer and journalist from Minnesota.