One thing that I thought I would never encounter when I entered the Parkinson’s community was people with the same illness getting angry at each other. As an advocate for people with Parkinson’s disease, I belong to various social media platforms and various online groups. On Facebook today, a question was asked, “Is it just me or is anyone else offended by the term “Parkie”. To my shock, this question opened a can of worms, and people have very strong opinions about this term. So seeing as my handle is the “Perky Parkie”, I found it appropriate to chime into the conversation.
**First let me start off with a disclaimer: I am in no way dictating what terms are acceptable to call a person with Parkinson’s disease. I am simply stating why I chose to use this term when referring to the PD community, myself included.
I have heard many nicknames used to describe a person with Parkinson’s disease. They include:
-PWP
-Parkie
-PD’er
-YOPI
-Parkinson’s Peeps
-YOPD
-Person with Parkinson’s
-Parkie D’s
With so many choices, how does a girl decide? I embraced the name “Perky Parkie” because it fits who I am as a Young Onset Person with Parkinson’s and encompassed my general demeanor…. perkiness! Although I use humor for the challenges in my life, I am not making fun of the diversity that many people face.
The main reason why I choose to use the term “Parkie” is that I don’t like the word “disease”. It has a negative stigma, with words such as sickness, dysfunction, infection, disorder, illness and even death. Hence why I named my book, “I Am Not Contagious”. Furthermore, with a term such as “Parkie”, it leaves an opportunity to raise awareness when people unfamiliar with Parkinson’s ask what it means to be a “Parkie”.
I use the word “Parkie” as an endearing term, which is not slanderous and is not making light of the serious opposition we endure. In fact, it reminds me that we are a community of amazing people who come together to encourage each other to be our best and we are not alone in our suffering. Parkinson’s doesn’t define who we are; in fact, it shows how strong we are. We need to take all that energy towards trying to find a term that we can all agree on, and put it into finding ways to support the overall cause…. The Parkinson’s community. Regardless of what term you prefer, we must not forget we are stronger in numbers.
Sounds like the debate has been going on for quite a while and will continue on. As for me, don’t mind the term Parkie although I hear it almost always used by others with PD. Don’t really think it is a term used or know outside the PD community.
Stay perky Miss Parkie!
When I joined the Parkinson’s community I was deeply touched by the overwhelming compassion extended by our local support group, including sffectionate references to one another as “Parkies”. As a retired civil rights litigator, I would defend our right to choose however we choose to name ourselves. I am also aware that members of a group who experience discrimination frequently reclaim the power of the pejorative term by using it to refer positively to other members of the
class. As a woman, I have the option of using the “b” word, or even the “c” word, just as some Afro-Americans hurl the “n” word. But words and their connotations have power. So eventually I had to rise to my feet in our support group to say that while we are all entitled to our own feelings and coping mechanisms on the issue of using the term “Parky” as an endearing reference, I, for one choose not to be defined by or self-identified gwith this label. I have no intention to “make friends” with this disease that comes like a thief in the night to steal the gifts that are the essence of me. While I accept the label in the spirit that it is applied, for me: Thems fighting words! My user name is DCMP – DON’T CALL ME PARKIE”!
DCMP,
I can respect your choice of not making friends with your disease. whatever you refer to yourself as I will stand beside you and fight Parkinson’s. Thank you for your comment!
Hiya Perkie Parkie
It is an interesting discussion on what PARKIE folks feel comfortable with calling themselves! I enjoy the creative approach to name this condition, Parkie….. it has a sense of endearment. For myself my approach has been a little different, perhaps I have not fully embrace this condition. I refer to my PD as Mr Parkie a parasitic person who shares my very being. I didn’t invite Mr Parkie to share my body he just came and set up house. He is a despot who has a lifetime tenancy with me, he tries his best to control my body and I have to work hard to outwit him. I guess like any group of people we all have different ideas but I have to conclude that humour is the best approach. Perkie Parkie your blog is a treat and you have a gift of making difficult situations funny……love your blog and your name
kinds regards Denise and Mr Parkie
Denise and Mr Parkie,
I love,Love, Love, your reference of a parasite. Thank you for the comment.
I use the term “Parkie” all the time. Much shorter and more light-hearted than “Person With Parkinson’s Disease
I absolutely love the Perky Parkie phrase! Love your blog. All of your information and thoughts help me immensely. Today sadly some people are offended by the simplest things. It is sad to have to be so opinionated and closed minded. Your message is awesome! Thanks for being you.
Awwww, thank you for your kind words Kim! You just made my day! 🌸
I am putting a “ditto” mark around Kim’s post because II couldn’t have said it better. It truly is sad that some folks have to be so insulted over the choice of words that are innocent. Your attitude and sense of humor helps me to smile through some of my tough days. Don’t you change your words or anything about you because of one’s persons unkind remarks.
Thank you Ellen!
Dear Perkie Parkie
I like your name it is cute and suggests there is an upbeat aspect to your personality so it is apt.
I am inspired by you to consider changing my own name.
I could be the Portly Parky, hmm not so sure about that. How about the Sparky Parky. That’s better but not quite me.
I feel that we should all be allowed to define our own identity if we choose.
So stay Perkie and stay you.
Take care
Jon
Portly Parky! Lol! 😂😂 Yeah, Maybe we should give that a little bit more thought! Thank you for your comment Jon. Hope you have an awesome day because you just made mine.
I read this today…I am a new parki…and proud of it…it’s important to have a sense oh humor…I would rather laugh the cry…hey…I could a job as professional cocktail shaker with these hands…and don’t ever ask me what’s shaking…
Here’s my take on this topic: if you are a member of the parkinson’s community, you can use whatever label you want. If Parkie suits you, fine. If not, find one that does. Frankly, I like that you call yourself Perky Parkie and find it to be a perfect fit for your demeanor. Like you, I use humor to face the challenges in my life and it is one of the reasons why I follow your blog. Things are hard enough for those of us living with PD. Why make it worse by complaining about the labels each of us chooses to use? Thanks Perkie for bringing some humor to our lives!
Great point John!
Wasn’t it MJ Fox who coined the Parkie term? I chose to use it in my blog based on you and him, but alas… methinks people complain too much. I find the term “goofy” in a positive way, and it helps me think that all of the time that I’m not “Dan” (because I’m focused on issues with PD), I can be something fun.
On the same note, I find the PC nature of getting uppity over how other people refer to us exhausting as well. I think most people are good and even if they reverse the order of words, they’re not turning us into a disease first.
To me, the keys are that
1) we educate + advocate
2) they learn from us
3) we’re happy in our own skin leading a people first life.
Keep doing what you’re doing.
Haters gonna hate.
The rest of us are going to be out there making positive change.
Dan, sometimes I have to remind myself that everyone has their own viewpoint and that’s what makes us unique. Let’s take that negative energy and use it to help the cause. You nailed it!
Thank again for an important post!
We have same kind of debate here in Finland. People with Parkinson’s don’t want to consider themselves as “sick”, especially at early stage.
You mention a list of of nicknames:
-PWP
-Parkie
-PD’er
-YOPI
-Parkinson’s Peeps
-YOPD
-Person with Parkinson’s
-Parkie D’s
We have not such a variety in Finnish language, only a few:
– Parkkis (Parkie)
– Parkki-ukko (male Parkie)
– Parkinson-potilas (a patient who has Parkinson’s)
– Parkinsonin tautia sairastava (a person with Parkinson’s Disease)
We have not such abbreviations as PwP, PD’er, YOPI, YOPD. So, it when you write an article in Finnish, it’s a real difficulty to decide how you refer to people with Parkinson’s in general or a group of them.
Best Regards
TImo
Wow Timo! Thank you for educating us on how other parkies refer to each other and another country. never even thought about that. Thanks for the comment!
I totally agree with you, Allison!
Thanks Ted!
Another topic that generates a rippling tremor at the epicentre of our comfort zone… thank you Perkie Parky… good read.
Something to consider – in order to not be left scrambling for our ‘feel good’ and non offensive label, when the time comes and that illusive PD cure is rolled out, should we start thinking now about a preferred ‘label’ …. aka Post Parky Person..?
…or continue encouraging and celebrating another aspect of our uniqueness ….please let me know, I’ve got a lot of T shirts to order for our victory parade, it looks like…!!
Celebrating our uniqueness… you said it best!
I like “parkie.” I admit I use the term myself, for the reasons you mention. I also feel a lot of kinship with my fellow PWP (pronounced “peewhups”) and hope I’m not offending anyone by it.
For me I love the word Parkie. I only met one person who said she didn’t care for it. That was it no debate. We move on.
As for me the one thing I’m very proud of with the Parkinson’s community is (and I say this a lot, to anyone who will listen) is I have never met an A**hole with Parkinson’s. I’ve met plenty of A**holes without it.
We are an amazing group. The parkies I’ve met and became close friends with is something I am very proud of.
Parkies are a pretty special group of people. Without Parkinson’s… I wouldn’t have made such great friendships.
Oh No!
You are a YOP? I would have never known.
In general why are we so hung up on creating names for someone?
Did it start with the term Baby Boomers? No that can’t be it, because in the 1920’s you might have been considered “A Flapper”. (check it out on Google if you don’t know what a Flapper is).
I never really understood why we, as a society, have to be so concerned with labels for this group or that group.
For Me, I would be considered an AtoZ’er: What is that you ask?
Well,
Active
Bold
Caring
Decisive
Enthusiastic
Friendly
……
Xceptional
Youthful
Zealous
This also reminds me of a song from the 60’s (my age is showing again) called: Signs
“…signs everywhere signs ….. so I made up my own little sign ….” Alexa, Play Signs by Five Man Electric Band
All you have to do is change the word to NAMES whenever they sing “SIGNS”. And you will understand.
Again, in general, no one should ever try to “name” you and you should not have to worry about what someone else thinks is derogatory or not. Just be yourself and stay true to YOU.
Couldn’t have said it better David!
I think it is tragic that some people get “darkie”
When confronted by the popular term “Parkie ”
Being too serious about this chronic disease
Can make it difficult to find much to please!
The term Parkie,puts laughter and a spark back in life
As a sense of humour is therapy for daily stress and strife!
Vote: To Parkie
I couldn’t agree more! Thank you for your comment.
I just wont a cure!
Uppity Parkies Unite
I love the term Parkie.
Parkie forever,
A
“Uppity” is an insult….. I think just as some people with PD (simple title) think that perkie parkie minimizes the intensity of the illness……be yourself….also funny isn’t about telling jokes….. it is the way you view life and express yourself that counts….you are fine and your self given title of perkie parkie is your id – link to being known….. go for it.
In my experience with pd for 16 years…dealing with the losses in my life’ and pain everyday with no time off for good behavior or holidays is the most challenging…..I try to do anything I love that makes me feel normal – activity where one can be completely involved and free YAh- KNOW?
I’m a Parky Boy, ParkyKlown, ParkinArtist…or whatever the day brings. You can choose what you say about yourself but not what others say about you. Why even go there ? Time wasted when you can be busy showing the world how wonderful you can be with or without a label. Here’s to us I think we’re great!
Couldn’t have said it better!
I do not like to call my health issue Parkinson’s. Before I read your blog, I referred to myself as having Park’s.
I love PerkyParkie. I just got my boxing gloves to begin my rock steady boxing class. I’ve had this Park’s for
seven years. It hadn’t really been too bad until now. I’m scared. Wish me luck and back at you.
Good Luck Gina! Happy to hear that you’ve begun Rock Steady Boxing. It’s a great program.
This is an example of why Parkinson’s will never get the air time or research funding that the pink ribbon people do (breast cancer awareness.) Everyone is born with breasts. People with the Neurological Malady called Parkinson’s Disease (Parkie) come in all different shapes, sizes, affliction, ages and now we know… temperaments. We should stick together and continue to form an imperfect support community bound together by common trials, love and the knowledge that ongoing exercise is key to staying mobile and social. Let’s say we will!
my immediate reaction is to say “/screw ’em if they cant take a joke”, but my real reacton is that these are our parkinsonian brethren who have to be shown the light. There’s enough shit that goes along with the disease, let’s laugh whenever we can. Besides, perky parkie is better than porky parky or parkie place, or Frank Zapppa’s Sheik(shake) Yerbouti
Porky Parkie! True, there can be worse things! Ha! Thanks for the comment.
A Parkinsonian is another term I’ve heard. I too, refuse to use the word “disease” and will just say, “I have Parkinson’s.” In fact, I thought I made up the term “Parkie” – and in fact, I did. Its just that other people (including you, Perkie) made it up too. Parkies forever!!!
Perkie, your ‘handle’ works for me. It wouldn’t matter what you called yourself, someone would object. I am glad to be a perkie parkie participant.