Today we are bombarded by 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 persons 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 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 that 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 we 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, or 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.