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Writer's pictureEllen Bookman

You don't look like you have Pd.

I can’t tell you how many times people have said to me “you don’t look like you have Pd.” When it happens, I literally don’t know what to say in return. And, for those who know me, know that I am typically never at a loss for words. Should I say thank you? Should I curse at them?


Or, go into a whole dissertation about motor vs. non-motor symptoms. Maybe I should just punch them in the face. I can’t explain it, but the comment makes me uncomfortable. Then, I freak for a second and wonder if I have ever said this to someone with any disease?


For me, right now, I look completely normal on the outside. I am in great shape from boxing. My clothes are pretty cute. My hair is cut and colored. I don’ have a tremor. But, guess what? The inside is a different story. At any given moment, my muscles on my entire left side could be stiff.


My meds could be wearing off which makes me have anxiety. My foot may be tremoring. I may have been up since 230 am and really fatigued.


I found this article called “What Not to Say.” Check it out: https://parkinsonsdisease.net/living/what-not-say/


LESSON FOR THE DAY: NEVER EVER EVER tell someone that they don’t look like they have Pd.

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