Today we are bombarded with a ton of information about Parkinson’s disease. How to live a more productive life, what type of exercise is most efficient, what should we eat, what medications are available, even what brand of laxatives work best for constipation… oh poo! We focus all our attention on how to help people with Parkinson’s disease but very rarely do you learn about what hurts Parkies.
Sometimes you just have to flip the script. Seeing as I tend to do things out of the ordinary, I thought of what can hurt Parkies, and not surprisingly, there are a lot of things that harm us, but knowing the average person’s attention span is short… squirrel! I thought I would stick with just 7 things that hurt Parkies.
1. Not taking the time to educate the public about Parkinson’s disease.
-My personal goal is to educate one person a day about PD. This can be as simple as starting a conversation with a dog owner at the dog park. As we share stories about how our dog children are amazing, I reveal a tale of how my dog (rest in peace) Crash has written a blog about his mother having Parkinson’s disease. This little interaction has just given me the opportunity to educate someone about the disease and who knows, maybe that person will tell a friend about a crazy girl who has a wordsmith for a dog named Crash, who blogs about Parkinson’s… and did you know she was only 32 years old when she was diagnosed? Gasp!
2. Politics in the Parkinson’s world.
-When I first decided to get involved in the Parkinson’s community, I was ill-equipped and oblivious to the fact that there would be a negative reaction to my presence. The people who I once went to for support, were now seeing my enthusiasm as competition and turning their backs on me. Here I was offering fitness classes, groups, and activities at no cost to the community. Not to mention I went to every Parkinson’s event I could find and various support groups in my area. But somehow, they believed that I was competing for “their” Parkies. So depending on where you lived, what hospital you were affiliated with, or who your Neurologist was, dictated what resources and information that you were offered. This confused me because all of the Parkies I’ve met, were like sponges for information, they didn’t care where the resource came from.
3. Spreading inaccurate information.
-I guess we can call it “fake news” or “covfefe” but when information that is just not true about Parkinson’s disease or is incorrectly misinterpreted, it can add to the confusion of the already complex disorder. This can come from the fact that every Parkie will have a unique version of their disease, no two are the same… like little snowflakes. We share information in the name of hope, but sometimes it’s important to check the source.
4. The loss of confidence in ourselves.
– The lack of our ability to stimulate conversation such as politics, to act in cohesive ways to affect change, combined with our internal losses makes this a battle we can’t win. When you lose confidence in who you are as a person, you become vulnerable and in some cases, this leads to a withdrawal from the activities that once you were passionate about.
5. Not getting involved in the PD community.
-Whether you’re a proud member of the Parkinson’s community or the president of deniers club, you need to get involved. It can be education, awareness, resources, becoming your own advocate, volunteering, participating in a trial study, or even just being there to support the community. We are stronger together.
6. The stigma that comes with the words “Parkinson’s disease”.
-Run! It’s the stigma monster! The majority of the world has an incorrect view of what the words “Parkinson’s disease” means. With our slowness of speech, masked facial expressions, and tremors, we can be easily misunderstood. Maybe we’re intoxicated, intellectually disabled, anxious, unapproachable, or just flat-out unfriendly. Our visible and non-visible symptoms are misinterpreted and only increase the stigma.
7. Parkinson’s gets lost in the narrative world.
-The Parkinson’s population is prominently elderly. Except for the small percentage that is special like me… age 40 or below in the house! Woot Woot! We don’t have a cool color (damn you Susan B. Komen for snagging hot pink) or a mythical creature as a mascot that represents Parkinson’s disease. We have an invisible disease that impacts a population that has deteriorated self-awareness and can easily be swept under the rug.
Well, there you have it. Hope you enjoyed my flip of the script.
P.S. I vote for our mascot to be a unicorn… so mysterious and magical.
Just diagnosed today with PD. Awake in the middle of the night and came across your blog. Thanks so much for writing it and thank you to all those who comment, as well. I don’t feel quite so alone and scared, now.
Hello,
I am happy to hear that my blog has helped you… even if it’s just a little bit! Thank you for your comment!
I am glad you found this Blog. It is important to reach out and find out as much as you can from people actually living with the condition. So called ‘experts’ can only really tell you what they have learned from research, reading, etc. There is nothing quite like a person’s own lived experience. I started my own Blog because it helped me, but also so that it could help other people who are new to this diagnosis.
You ARE special and I am SO proud of you. I vote for the vivacious sloth for a mascot.
Well done, as usual. Sometimes people hope PD is not contagious, because neurodegenerative diseases are scary. Every step we take to spread knowledge is a break in the wall of indifference. And irony is a key driver.
I so appreciate this blog today. Education is so important, but how do you do it? It is so frustrating to me. When I am out in public even among my friends, and my head starts moving back-and-forth in weird motions., or when I am constantly holding a hanky to my mouth to catch the drool, or when I take forever to move from one spot to another, or all my words get a
twisted up in my speech, even though in my mind I know what I want to say, then my heart screams out: “please ask me why I am like this! I would love to explain to you that I have Parkinson’s, and I’d like you to know what Parkinson’s is like.“ But no one asks, so I wonder what they’re thinking when they see my weirdness. It’s such a consolation to hear from all of you, and know we carry something together in our hearts that no one else can understand.
Hello Gail,
I am usually the first one to blurt out that I am sorry if you can’t hear my voice or am having weird motions, but I have Parkinson’s disease. Once it’s out in the open, people tend to be much more receptive, and then I don’t have to be paranoid about my symptoms showing. Hope this helps!
Hi Gail, When I join a group I typically let them know I have PD. I also will ask them to let me know if I am speaking too low because I sometimes can not tell I am speaking too low. I have found most people respond very supportive of me and often tell me they have a friend/acquaintance
or relative who has PD.
As usual, an excellent posting Perky! I agree with your observations and appreciate you sharing them. I also like the unicorn as a mascot and would suggest it be called Crash in honor of your pal 🙂
Hello John,
Awwww, that would be so sweet!
Perky, thank you for your Post. Your 7 items are right on point. I would like to say that I used to gauge myself to a normal person as to what I accomplished in a given day. I now realize that I am not in a body that has fluid and fast movement. To compare my efforts for a day to a person who doesn’t have PD is unrealistic and unkind. And, so the first person I had to inform about PD was me. And, so I strive to be kind to me before I expect others to do so.
From Canada’s CBC
https://gem.cbc.ca/media/you-cant-ask-that/s02e07
To me, it was worth watching. Not only the segment about Parkinson but the whole 2 year serie.
Every single point is spot on! Politics in the PD world…ugh! Cooperation, not competition makes for healthier, happier Parkies! I am hoping that the National Plan to End Parkinson’s Act helps bring some much needed awareness that will eventually change the image and the stigma of PD. (Contact your legislators). And I was thinking our mascot should be a sloth. They are darn cute, slow as heck, only poop once a week or so, and have pale substantia nigra. I think I have found my spirit animal (and also wonder what would happen to a sloth if someone slipped it some carbidopa/levodopa).
Hi Lauren,
A sloth is my spirit animal also! They always seem to be happy and smiling. Although slow at times but sometimes that just the way of the world.
I like the part that you wrote about educating people. As a teacher, deciding to educate and advocate for this cause (when the diagnosis became official – Nov1) the first thing that I did when I woke up the morning after my 90% chance that this is what you have appointment. Since that time, I think this is a lot of what keeps me positive. I know you seem to get your blog out there a lot, so that’s definitely a good thing. This site is starting to post blog links if you’re interested in getting in. It’s not mine… just one of many that I utilize in this way. https://www.facebook.com/groups/325520337643000/
I carry a medical Alert card, from NPF ( National, Parkinson’s Foundation) ) and have used it . It states,
I have Parkinson’s. Disease, which could make me move slowly and have difficulty standing or speaking,
I AM NOT INTOXICATED. .
Please call my family or physician for help. Spaces for phone# , etc on card.
My friend fell at a local restaurant and when he appeared impaired, the police were called. It took a few minutes to explain he had PD. He had a stutter when off and was also injured in the fall.
This card is part of the Aware in Care hospital kit, It comes with other helpful info , like a pad of tear off sheets for medical staff , with info.to know, when caring for PWP. Like the importance of Giving PD Meds on Time, every time when in hospital. The Aware in Care kit is free from NPF. , email http://www.parkinson.org
http://www.parkinson.org .
I agree, let’s be unicorns!!!! Great article. I am always trying to educate my friends and families about the disease. Even as a nurse, there was a lot I had no clue about before my diagnosis. Thanks-fellow yopd.
#4 and#6 hit me hard!
I used to be able to run circles around most people 20 years younger than me! I am very creative and for a time, studied to be an interior designer, until I got so sick from environmental allergies. My self esteem took huge hits, and I admit I needed to withdraw in order to regroup. Now, it takes so much physical energy to create that often, right after my naps, I find the physical energy to create.
#6 involves the stigma associated with Parkinson’s disease. But usually, when I tell someone that I have Parkinson’s disease, I am met with a blank stare. The truth is that very rarely will I find a person who is familiar with PD. I have found that even with my own kids, there’s either a lack of interest or fear of the future around the disease. I have even found that lack of understanding in the medical community, including nurses, especially recovery room nurses,, and doctors.
Always being the teacher to so many uninterested hearts is draining. But “its a dirty job and somebody has to do it!”
What a wonderful world it would be if we would all just communicate with each other! In my state of KY, Louisville & Lexington are only 70 miles apart and yet despise one another. And northern Kentuckians– they act as if they’re a part of Cincinnati. It baffles me, too, when choices are made/not made bc of the source. Politics, indeed!
Your blogs are always refreshing! I also love the idea of crowning a pink unicorn as the mascot for PD! 😍
#6. I was shopping with my granddaughter and this lady kept watching me I don’t have tremors but I have a little diskinisha
I still Drive but I know my limits I wouldn’t put my granddaughter in harm. and I just live around the block. this woman got my license number and called the police. They came to our house and were almost as mad about her wasting their time as we were. All she had to do was ask me if I was okay she just assumed I was intoxicated. And I held the door for her when she left the store
That is so sad… and shocking!
Thank you. From one Parkie to another!!
Humans require a purpose. Parkinson’s usually diminishes that purpose. Your post is a very clear statement that all Parkies have a purpose, many don’t recognize it or value their potential impact. I agree with all of your statements except for # 3. There really is very little in the pot of reliable knowledge or information. No known cause, no known cure is what I told my horse’s vet years ago, and it applies here. There is a lack of reliable and true knowledge about the brain or Parkinson’s. It’s like saying we understand the Universe. Our brains reflect that Universe. It’s more than a pill can fix, it’s more than knowing the cause, it’s more than one answer probably. But, the rest of your statements are good as gold. Thanks
At least we are a community. I feel a sense of extra kinship with my fellow parkies. And like you, I am at the ready for anyone who is willing to be educated on the subject.
Something I think hurts us is……………. Michael J. Fox. Yes, I said it. He hurts our cause.
Now Michael, as fellow hockey playing, guitar strummin’ Canadian xpat, don’t take this the wrong way, but you make having Parkinson’s look so darn easy!
All the same, keep doing what you are doing, which is quite admirable. But get a cane, or drool a little from time to time will you.
agreed fully as well as the Canadian Parkinson’s society …not aggressive enough—-trully a silent disease
I just think he is amazing for taking his struggles, making it public and trying to help the Parkinson’s community. I mean really, isn’t it the public who decides if he looks like he is doing good or bad based on our own realities? I’m not sure if we would feel better if he used a cane or drooled. But maybe that is just me?
Perky, I meant for him to an effect on the general public, not on we Parkies.
ohhhhhh….. that makes mmore sense. I still think he benefits the cause. potato patato!
Number 6 has affected me. My in laws just assumed I had become an invalid overnight. It kind of hurt to see them acting like I was broken. The more I read, the more I know I have had PD for 20 or 30 years even though I was only DX two years ago. I qualify for almost all the descriptions in number 6 and have for as far back as I van remember.
#2 Really hit home – thought it was just Jim & I that had that kind of experience. While Jim was just 50 when dx, he probably had it since he was about 40. Thanx for this! Will share for sure!!
Right on, as usual. I like to share what the first signs were for me (lack of olfactory senses, cramped handwriting, weakness of muscles), so that alleviates most questions about how will the person know if they have it. After all, we humans are self motivated.