I have been dealing with non-related Parkie health issues, which have consumed my time and my energy. So, for this week, I thought I would let you enjoy one of my older posts about a trip to the mall while I rest and recover. Enjoy!
One of the most frustrating things I have run into on my journey as a Parkie is people’s ignorance. We have all been guilty of speaking before we think. In fact, before I had Colon Cancer and Parkinson’s disease, I was not extremely aware of the impact my words might have on others and often spurted out bold comments that were just floating around in my head. But I just experienced the deadly foot-tis-in-mouth disease on an epic scale… and bonus… it didn’t come from me!
A couple of days ago, I had to fast for 10 hours to get 14 tubes of blood drawn to check on my auto immune issues. Just as expected, the fasting and inability to take my medication as regularly scheduled, my symptoms were off the charts annoying. Luckily, I had planned to take the day off knowing that this could be a challenging morning. After completing my tests, I felt that I had rightfully earned myself a super yummy chocolate donut and a trip to the mall to engage in some retail therapy.
I knew that my symptoms were unmanageable and my dyskinesia was making me dance around like I had ants in my pants, but if I spent every arduous day avoiding being out in public, I would turn into a toad. So with specks of chocolate donut coating the corners of my mouth and my dancing shoes strapped on (one must always have a good pair of shoes when your symptoms are acting out… we have enough to worry about, don’t need to throw uncomfortable shoes in the mix) I proceed to the mall.
Now, I’m not an idiot. I know when my symptoms are bad, but I don’t focus my energy on making others feel comfortable with something that I can’t change. I won’t give up my precious time on earth trying to hide something that I have very little control of. Plus, retail therapy is work… I have to stay focused on the various “sale” or “buy one, get one free” signs and this all takes extreme concentration.
I have located an exciting 50% off cute sports bra sale at Victoria’s Secret… which by the way, cool kids call “Vicki’s”. So I am standing in line at Vicki’s, as you can see in my very detailed diagram… I felt a visual depiction of that day was necessary… don’t be jealous of my artistic skills, some people are just born this way.
I make my way up to the cash register and hand my loot to the model… I mean, sales person. At this point, I am clueless that I’m dyskinetic. Like I mentioned before, I don’t waste my time on making people feel at ease with the array of Parkinson’s symptoms I display. Well I guess I was really getting into my performance of the dyskinesia dance, because when I turned around to leave with my merchandise, the woman standing in line behind me says, “You move around a lot.” I was thrown off a bit. It took me awhile to respond with, “Yes, I do.” Thinking that should be the end of the conversation, but I was not so lucky. The woman (who I so kindly portrayed as Jabba the Hutt waiting in line to buy Spanx) continues with, “Do you move around all the time?” With leaving me no time to respond, she follows up with, “What’s wrong with you? Do you have ADD?”
Now I usually don’t get to experience this level of verbal diarrhea, so I was slightly stunned. And while I would have liked to make it a teachable moment for Jabba, I was very much aware of all the people surrounding me that could hear the conversation. I replied, “ I have Parkinson’s disease.” With shock on her face as, she almost dropped the Spanx in her hand. She exclaims, “I am so sorry!” I… not missing a beat, respond, “Don’t be. I’m not.” Then I drop the mic and walk away.
Now you can imagine I have been thinking about this conversation a lot and of course now think of all the things I should have said. I would like to share those thoughts with you now. Here are the ways I could have responded to Jabba’s comments:
- You didn’t hear about the big sale? They give you and extra 70% off your purchase today if you dance around at the cash register and say “I want in on that sexy sale”.
- I guess the crack is wearing off.
- I really have to pee… If I stop moving I will piss my pants.
- I have scabies…. *make sure to scratch your arms.
- I am trying to hit my daily 10,000 steps on my apple watch.
- Smile. You’re on “I’m an ass and will say whatever comes to mind” hidden camera show.
- I am practicing my Riverdance routine…
- I have a neurological disease that will end up disabling me, but there is a pretty good sale on sports bras today.
It pains me to know how cruel and un-sympathetic people can be…don’t know what happened to our society…people seem so much self-absorbed…I am 74 years old…people ignore those of us who have physical issues…they chalk us up as faceless and nameless…
I go for nr 8, definitely.
At the very beginning, I felt guilty and I tried to fade away.
Nowadays, I do not want anyone to feel embarrassed, but I simply do not care about what they may think.
If they are rude to me (and sometimes they are), I tell them they should be more respectful, because they do not know what the future brings.
Anyways, I appreciate very much your blogs and your attitude. It’s an inspiration for all of us.
Thank you
I just ordered a medic alert bracelet…sometimes I walk funny…and my right side is weaker than my left….I worry that i will judged in a negative way…I will never judge anyone again…I get it…
I once had a complete meltdown, when buying a bottle of what, that I desperately needed to quench my thirst. Struggling with my wallet, I accidentally made a clean tear through the only money I had namely, a five dollar note. The cashier and her boss insisted they could not accept it as legal tender. A small piece of sticky tape would have easily solved the problem. I explained that I had Parkinson’s, but they would not budge an inch.
Vera, that’s awful!
I think that the title of this post about THINKING BEFORE YOU SPEAK should now apply to thinking before you post.
Er, maybe I should not post this! 🙂
Actually, I love your comments as well but I have seen soooooo many instances of people who post messages that they wish they could retract years later.
My comment is not about this particular posting but in general, I just wish that people would think (by that I mean, “consider the consequences or your next step”) before going forward. Just a personal rant of mine.
When I’m asked why I’m shaking, some of my favorites are “Beautiful women do that to me,” “The cocaine hasn’t worn off yet,” “I’m meeting the Queen in five minutes and I’m so excited.”
Once I was having problems hitting the button in the elevator and a young girl said, “What’s wrong with you?” I said, “Last time I rode this elevator it dropped five floors down to the basement.” She punched Open Door and was out of there so fast…
Usually when people ask in what sounds like a blunt manner, they’re really concerned for you and I’m not ashamed to be honest and say, “Parkinsons.”
Love it! You’re a riot.
This morning I was buying a ginger ale to ease the queasy feeing that my sinemet often gives me in the morning, and the clerk saw my left arm shaking and she asked if I was ok. My response was that I needed the soda to mix with the bourbon I had stashed in my purse. She said oh, so you have the dt’s? And I said no, just PD!
Ha! Awesome!
Lady , you are hilarious! Thank you so much for the giggles…needed that today.
Linda, Happy to help!
I always seem to encounter people in the grocery store who make the rudest comments. My favorite is when someone asks ‘Is there something wrong with you?” My reply is, “yes, there is!” Then I smile and move on. It drives them crazy wondering just what is wrong!
Ha! Perfect. Keep them guessing!
Love your posts. I was shopping at Penneys. Cashier gave me total as I struggled to get out my money. She repeated herself in an impatient voice. I looked up and said with tears in my eyes. I am going as fast as I can. I have Parkinson’s. She turned white and apologized profusely. A little education goes a long way. Sweet as pie now to me and I am sure to others. I just found out I have a stress fracture in my foot related to the dystonia. Air cast, crutches , no weight bearing and PD….interesting.
having a sense of humor will always help 😉
Having been diagnosed 1 1/2 years ago I have finally come around and accepted my PD. To me i am totally comfortable with all the shaking and tremors. I have no shame in this however the one thing i struggle with is the slowness. I had one occasion when i was purchasing a coffee and i was very slow trying to get my hand in my pocket for money and then get my hand out of my pocket and then try to open my hand. With people in line behind me i could feel the eyes of everyone on the back of my head. When i looked up the lady behind the counter was rolling her eyes to the ceiling and jestering with her hand as if to say ” come on move it”. That person made me feel so horrible. I had never experienced that before and unfortunately had no come back or comment for her.
I like the way you replied to your model (salesperson). I thought you showed great tack and judgement in your comment. I only hope i can think fast enough the next time this happens to me.
The comments I have had are “Why are you so stern?” Or Smile why are you so glum? What’s wrong you look so sad or so tired? I struggle with whether to smile, give them the finger or just them think i’m sad or explain PD to them. I was diagnosed four years ago and ive gone from not wanting to discuss it, to talking freely about it and now wanting everyone to look past the PD.
It’s the perfect opportunity to educate someone! But I am with you…drives my bonkers when someone tells me to smile. A forced grin is not that attractive.
I agree and am sure my eyes might be saying something else. Like “Oh aren’t you sweet!” 😝 Someone should invent an id bracelet or pendent that you could record The “top 10” or 20 things not to say to you. Thank you Perky Parkie for a blog that informs on things that we don’t see elsewhere and can laugh and identify with other people in the same shoes. Speaking of shoes any ideas, opinions on what, where to find shoes that work with and look nice for Parkies?
I have written a blog about what people have said to me, if you want to check it out. Regarding shoes, I am working on a “Perky’s Picks” review of possible shoes, so keep an eye out for it! Thank you for your comment. https://www.parkinsonsinbalance.net/2014/02/12-things-say-someone-parkinsons/
i get …page not found error
Robert,
It might be your browser… because it’s coming up for other readers. I will look into it. Thank you for letting me know! Here is a link for you to try: https://www.perkyparkie.com/2021/06/people-think-before-you-speak/
My new “church shoes” that I wear with dresses are white leather sneakers! And recently I bought a shirt on Etsy that says, “This is what Parkinson’s looks like.”
Karen,
That perfect! White sneakers are totally in right now!! My favorite t-shirt saying is “I make Parkinson’s look good.” Ha!
I’m sure you get asked this all the time, so I’m sorry I’m advanced! But how did you go about getting diagnosed with Parkinson’s? Or how did you even know to look for for something like parkinsons?
Any time I bring it up with my doctors they think I’m crazy because I am in my late teens, and it’s an anomaly so young, but I am worried about it since i seem to have a lot of the characteristics. I already have an autonomic nervous system problem and am worried about other things.
Anywho, I hope you’re doing well!
Unfortunately there is not a definitive test to show that you have Parkinson’s disease. You and your Neurologist can work together weeding out possible diagnosis.The most common symptoms are tremor, rigidity, slowness of movement, and other non motor issues, such as loss of smell, double multitasking or sequencing go movements. I would see if you can get into a Neurologist preferably a Movement Disorder Specialist and get some feedback. Good luck!
I am 43 years old now but have juvenile onset PD. My symptoms began when I was 14. It took 10 years and a very dedicated family doctor to receive my diagnosis. I had seen neurologists and they had no idea what to do with me. When I finally say a movement disorder specialist I was diagnosed in 20 minutes. It’s very important to see the right kind of neurologist. No one looks at a teenager, even with clear symptoms, and thinks ‘Parkinsons’. Don’t give up. You have to advocate for yourself and keep going until you get the help you need.
I have not had anyone comment in such judgmental way-not quite sure how I would react. I did have someone comment after yoga once who thought I had really bad carpal tunnel issues. She was really embarrassed when I said it was Parkinson’s.
Back when Woody Allen did standup ( and the Dead Sea was only sick) I remember him saying,” ” The writer thinks of the perfect comeback on the way home from the party. ” I love #2 & #3.
HAHA…..great post Allison! You should record your answers on your cell ready for play back (or pay-back)! I don’t know which of the comments the air-head said is more curious? ADD…..how did she get there?? The she clearly heard the word Parkinson’s – no explanation needed, which I’m sort of surprised at, given her line of questions.
LMAO at Japezoid Man’s hysterical non-PC remark! 🙂
That’s my Dad for you! Gotta love him.
HAHAHA….just gets better! 🙂
Love your answers, love your blog! I’m not a Parkie, but I am a Crip (and please don’t misunderstand – I am not a gang member; I use a wheelchair) who has also gotten some weird comments from (alleged) Normals over the past 62 years. I used to get really worked up over what people said. Now I just figure that people – most of them – are doing the best they can. I could try to teach them all a lesson (G-d knows they need it!) but it would probably fly way over many heads. So I respond in the easiest way for me, which is simply, “Yes, I am.” or “Yes, I do.” Big smile. That’s it. Over and out. I’m cool with that. But, again, I’m old. Thanks for a great read, and take care!
Another one:
#9. “We are having an earthquake.” Then look her straight in the eyes and ask, “Can’t you feel the ground shaking, or am I just imagining it????”
Baby seals aren’t the only animals that should be clubbed.
i would have likely resorted to a meaner response, especially if she looked like Jabba, and said “You obviously don’t move around enough”
How about ‘in another dimension I am at a school sock hop, but I am having trouble keeping my dimensions from over-lapping. Funny thing is, I am not old enough to wear this bra in that other dimension”
Allison, these are all pretty brilliant come-backs, what about you turn into a she-hulk in the next 10 minutes and the transformation is already underway, just need a little extra support for these slight inconveniences in the day….
Ha! Perfect!
I’m having a contest with my friends- we’re seeing who can get the first dumbass in Vicki’s to comment on my actions- you won.
Oh that’s good!
Love this!!
I really like your original comment, “Don’t be [sorry]. I’m not.” It’s perfect.