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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Mighty Masked Mom

Terri Reinhart

“Why do you wear a mask and hood?"
"I think everybody will in the near future," was the man in black's reply. "They're terribly comfortable.”
William Goldman, The Princess Bride

"Well," my neurologist had just watched me walk up and down the hall several times, "it's been over two years since I've seen you. You've got more dystonic movements in your walking and posture, you don't blink very often, and you're masking more." 

Masking. Okay, that explains why people have been looking at me and asking me if I'm alright, or telling me I look pensive. Walking down the street, a stranger stopped me and told me to smile. Dogs look at me and sit... without being told. While I don't mind being thoughtful and I don't have the need to look chipper all the time, it would be nice if people could actually tell how I'm feeling by looking at my face.

In normal, non Parkinson's folks (mostly women), the term du jour is "resting bitch face". The definition, according to The Urban Dictionary is: a phenomenon in which the resting face lacks animation and appears to look bitchy at all times, thus leading people to believe a person must be upset, a snob, or a bitch. Thanks Urban Dictionary. Now I'm really feeling depressed.

After asking my doc about my crashing episodes and describing them to her, she briefly considered the possibility I might be going through "dopamine crashes", but then decided no, it's just life with a Parkinson's brain. "Your body just reacts differently than someone with a non-Parkinson's brain," she explained. "You're just more frail." 

Frail? Damn.

When I got home, I went to the thesaurus. At least, maybe I could find a different, nicer sounding word.  I was not thrilled. Synonyms of frail included:  feeble, decrepit, brittle, flimsy, sickly. My daughter suggested delicate. Right. The first time she calls me delicate, I'll call her a princess. However... when I looked up the synonyms for delicate, that was a different story. I could live with some of these:  rare, exquisite, elegant, gentle, subtle. Not bad.

Later that day, I had to stop by the cable company and sort out a few differences in opinion on our bill. After getting the spiel, the clerk looked at me. I looked back at her and asked what they would do for us. I didn't blink. Five minutes later, she had knocked $30 off my monthly bill. Maybe this face of mine has some advantages. 

Words - names and labels make a difference. Frail? Hah! Okay, okay, if I get overtired, I run the risk of getting very ill and being in bed for several days. However, despite this, I'm still the primary caregiver for my elderly parents and I still help watch our grandchildren at least once a week. Frail doesn't fit. I am not frail and I certainly do not have a resting bitch face. 

I am the Rare and Mighty Masked Mom and I have amazing superpowers.

Granted, my superpowers are limited to winning staring contests and making dogs and the occasional cable clerk behave, they're still superpowers.


"Look, I don't mean to be rude, but this is not as easy as it looks, so I'd appreciate it if you wouldn't distract me."    

~ Westley, the man in black, The Princess Bride