A vocabulary lesson Parkinson’s families will intimately understand
A columnist shares a notable glossary of Parkinson’s disease terminology
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When you are diagnosed with a chronic and complex disease like Parkinson’s, it can be like learning a new language.
Words like “gait” (the body’s posture while walking), “dyskinesia” (uncontrolled, involuntary movements affecting the arms, legs, head, or whole body), “micrographia” (tiny handwriting), and other strange-sounding words suddenly show up in everyday conversation. It can feel like you’re a walking medical encyclopedia, not a person.
I’ve been there. So, in the spirit of solidarity, I’ve put together my own glossary of Parkinson’s disease terminology to share with you. Here it goes:
Hitch in your Giddyup: This is when you just can’t walk right and start to shuffle or drag a foot behind you. Instead of smooth movement, it looks like you have sand in your gears. It happens when you have balance and gait problems and slow movements, also called bradykinesia. It’s also how my husband described the changes he’d seen in me when we met with a neurologist for the first time. Usage: “She’s got a hitch in her giddyup, doc!”
Halulus: I wish I could take credit for this one, but it’s from the Apple TV series “Shrinking.” The show tells the story of a multigenerational group of friends, one of whom has Parkinson’s disease. This character, played by Harrison Ford, has hallucinations, which the others fondly refer to as “halulus.”
Parkinson’s disease-related psychosis, which includes hallucinations, affects 20%-40% of people with Parkinson’s. Usage: “I hope if I have halulus someday, I’m in a bath with Jason Momoa.”
Shaky the Mohel: This is another one I can’t take full credit for. It comes from an old episode of “Seinfeld” in which Elaine hires a mohel (a person who performs circumcisions in the Jewish faith) with shaky hands. It was an early nickname for me when my tremors were bad, and something of an epithet from me when I’m trying to use my fine motor skills and stillness eludes me. Usage: “Hey there, Shaky the Mohel, can I help you wash the crystal wine glasses?”
Princess Parking: As my Parkinson’s has progressed, I’ve obtained an accessible parking placard. I try not to use it if I don’t need it, but sometimes it means the difference between using all my energy to walk somewhere and being able to enjoy the moment once I’m there. The mocking use of “princess” keeps me in check and reminds me not to take advantage of the placard if I don’t need it. But it can be a huge relief on bad mobility days. Usage: “How are you feeling today? Do we need princess parking?”
Parky Girl: This has become a term of endearment between my husband and me. It can be used as an expression of fond compassion, such as, “How’s it going, parky girl?” Or of bemused frustration, such as, “Hey, parky girl, get over it!” It can be both a word of encouragement and a statement of fact. Usage is determined in the moment. Alternate usage is “parky moment,” when I’m having a pretty good day but suddenly can’t do something like open a twist-top jar: “I’m having a parky moment, can you help me?”
Unshakable Optimist: This is the condition in which I try to live and learn every day with Parkinson’s disease. It’s a statement of defiance, of my daily decision not to stay at the pity party too long. It’s also a statement of pride that I try to live up to, to represent this disease in the world without shame. It’s a rallying cry to show that we will beat this disease — maybe not in my lifetime, but soon. It’s proof positive that I won’t give up.
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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