The Language of Parkinson's: Understanding Parkinson's Terminology
Before my diagnosis, I knew next to nothing about Parkinson's disease (PD). I soon discovered that PD has its own language. Some of the terms I was soon to become familiar with were: dyskinesia, dystonia, bradykinesia, deep brain stimulation (DBS), basal ganglia, essential tremor, micrographia, parkinsonism, Sinemet, substantia nigra, dysphagia, levodopa, carbidopa, dopamine agonist, facial masking, akinesia, COMT inhibitors, globus pallidus, Lewy bodies, "off" and "on" periods, etc. After having had PD for 10 years, I've been quite fluent in PD speak and can converse with confidence with my neurologist.
Learning as much as I could about Parkinson's
Since PD is a disease of the brain, I tried to learn as much about the brain as I could and quickly found the task to be a daunting one. Several questions crossed my mind: Where do I begin to search for information on my disease? What sources are the most credible? Is the information written for someone recently diagnosed and knows little about PD? I ran across numerous articles about PD written for medical journals meaning they were targeted to physicians. I then found a blog written by a woman in Colorado who had, like me, been recently diagnosed. In one of her posts, she discussed how useful the book Parkinson's for Dummies was. This was one of the many books in the "For Dummies" series that focus on a wide range of topics like personal finance, computers, auto repair, etc. There are at last count over 2,500 titles in the "For Dummies" series. Admittedly, I was put off at first by the title of the book. How dare they call me a dummy! But, in all honesty, that was exactly what I was. When I put my pride aside, I bought the book and found it to be a good start for someone who is newly diagnosed. It explained in very simple terms what Parkinson's disease was, what causes it, how is it treated, what the most common symptoms were, and included a list of additional sources of information.
The history of Parkinson's disease
Parkinson's is named after James Parkinson who first wrote about Parkinson's, or as he called it, shaking palsy, in a monograph he published in 1817. He wrote about people he observed who had what we now know as the cardinal symptoms of PD – tremor, slow movement, rigidity, and postural instability. Unfortunately, Parkinson's essay did not draw much attention in the medical community. That changed when French physician Jean-Martin Charcot obtained a copy of James Parkinson's essay and found that many of the patients in his clinic at the Salpetriere Hospital in Paris had disorders similar to the ones that Parkinson had written about. He codified the disease's four common symptoms that Parkinson had observed and added two more: small handwriting (micrographia) and facial masking (hypomimia), in which facial muscles no longer work properly causing a reduction in facial expressions giving the patient a mask-like appearance. Because Charcot noticed that not all patients had tremor, he argued that labeling the disease shaking palsy was misleading. Instead, he proposed that the condition be named "Parkinson's disease".
The name matters
Charcot was right. It matters what you name something. For example, according to a 2014 National Academy of Sciences study, death tolls from hurricanes with feminine names tend to be higher than those with masculine names. Why? The scientists believe that male names are perceived as scarier than female ones. The less one fears a hurricane the less likely they will heed warnings to evacuate which results in a higher number of fatalities. Then there is the ugly Patagonia toothfish, which would be a hard sell in any restaurant. That is until a fish wholesaler by the name of Lee Lantz changed it to Chilean sea bass (even though it is not in the bass family). Sales for the fish spiked. There are some people with Parkinson's, perhaps many, who refer to themselves as "Parkies". Initially, I didn't care for this label because I did not think it conveyed the seriousness of my condition. However, over time I have come to embrace the label as it helps me to not take myself too seriously and to maintain a sense of humor.
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