When I Decline Your Invitation, Remember, It’s Not You, It’s Me
Graphic: Jean Mellano
“It must be borne in mind that most Parkinsonian patients remain mentally alert even as their physical condition becomes severely impaired. At the same time, they are normally extraordinarily self-conscious about their infirmities. … Tremors, speech impediment, walking difficulties, all make one not only impatient with oneself, but also often ill-at-ease with others.” — F. M. Howard
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Recently, a neighbor asked me to join his wife and him for dinner. My response was, “No thanks,” and I provided some lame excuse. I immediately sensed his disappointment and rejection. This gave me pause to think about why I didn’t say yes.
This column aims to give people without Parkinson’s disease insight into why people with Parkinson’s may appear antisocial. More often than not, I’ll decline invitations to dinner and other social events.
It’s not you, it’s me.
Why do I always say no to dinner invitations from friends?
In an attempt to keep Parkinson’s symptoms at bay, I must take my medications on time every four hours. Perhaps I don’t want you to see the addict I’ve become because of my strict adherence to medication timing. Or, I don’t want you to see me experiencing an off-episode when akathisia sets in. Typically, when this happens I will get fidgety and rock back and forth.
Eating out is no longer enjoyable for me. When I am finished eating, there is usually a pile of food littered on the floor where I sat.
Rarely can I get through a meal without choking or coughing. Sometimes the liquids I drink come out through my nose. I have to hold my utensils in an unorthodox way to cut my food since my left hand doesn’t always listen to me. If I don’t pay attention, food can go flying out from under my fork.
Also, I tend to knock things over frequently. Oops, there goes the glass of red wine I knocked over, staining the nice white tablecloth.
My Parkinson’s symptoms are something I prefer experiencing in the privacy of my home rather than in a public space.
It’s not you, it’s me.
Why do I rush you off the phone?
My speech has deteriorated, and I tend to rush my words. Sometimes I mumble, and people frequently ask me to repeat myself.
I am not a great conversationalist, and I don’t like to chat on the phone or in person.
Saying some words can challenge me. For example, someone asked me the name of the band that sings the song “Iris” in the movie “City of Angels.” When I tried to respond, I couldn’t articulate “The Goo Goo Dolls.”
Parkinson’s has very strange ways of affecting a person’s abilities. There is never a dull moment!
It’s not you, it’s me.
Why don’t I return your emails promptly?
Writing emails can be overwhelming, as my 80-words-per-minute typing skills have vanished. My uncooperative left hand (Thank you, Parkinson’s) is mainly to blame for all of my typos.
Yes, I can use spellcheck, but that doesn’t catch everything. My left pinkie might inadvertently tap the Caps Lock key, and my left ring finger can put too much pressure on the “S” key. I’ll look up at the monitor and see multiple typos of the letter “S.”
While it used to take me five minutes to type a short email, it now can take me twice that long just to make it readable. Since I don’t always have the time to send a fully readable email, I have included a disclaimer in my email signature that states: “PLEASE FORGIVE MY TYPOS AND CURT RESPONSES.”
It’s not you, it’s me.
Why is it me?
In addition to feeling embarrassment caused by some of my symptoms, I also expend a tremendous amount of energy trying to appear normal when I am in social situations. As if Parkinson’s fatigue isn’t enough, I work extremely hard to control my symptoms, which further exacerbates my fatigue.
When I do go out, people noticing my quirks may not understand that this is what Parkinson’s is doing to me. I am the one that feels discomfort. Hence, I avoid company. When I can get to the point where I find the humor in some of my symptoms, I will break free from my self-imposed isolation.
Intellectually, I understand that my friends like me for who I am. Who I am has not been changed by Parkinson’s, and my true friends don’t care if I spill their drink, send emails with typos, or can’t pronounce a word.
But don’t count me out yet. I may surprise you one day and say yes to dining out. Or perhaps I may pick up the phone and call just to chat.
Remember, it’s not you, it’s me.
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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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Comments
jane Cooper
my symptoms started shortly after my triple bypass surgery. My sister has always maintained I suffer from ptsd because of my surgery.
Hi Jane. More than one neurologist has told me PD can be triggered by emotional, physical or mental trauma. I was diagnosed 7 months after my husband took his own life. another friend of mine was diagnosed several years after she was beaten up about her head and one other friend had a very difficult childbirth and she developed young onset PD. It does not suprise me that you have developed PD because of the physical and mental trauma you experienced from your triple bypass.. it is my belief that many of us may have a ppredisposition to a disease and something can trigger it.