So, yesterday was World Parkinson’s Day… celebrated to create awareness about the long-term degenerative disorder. It also marks the birthday of James Parkinson, a physician who first described the disease. Did you know this? I did know this…but two years ago I didn’t. There were lots of things that I know today that I didn’t know two years ago. Lots of things about Parkinson’s Disease. I’m sure just about anyone of you reading this has experienced this type of “on-the-job training” in some capacity. Forced to learn about something that you have only heard of but know little about. But now…because of necessity or happenstance or just raw dumb luck…you must become educated about it. That’s where I am.
This post is going to take a little bit of a different direction than my previous posts have. But, it’s hopefully going to be a great way to allow you the opportunity to learn about some of the lesser-known aspects of Parkinson’s. From people who know the disease best. People living with Parkinson’s.
I shared on social media a couple of weeks ago that “The Mighty”, an online site that publishes news articles, stories and research updates on important medical issues, published the first “Just Shake It Off” blog post I wrote. One of the editors reached out to me last week asking if I would contribute to an article she was drafting for World Parkinson’s Day. She asked me to answer the question, ” What’s something you don’t understand about living with Parkinson’s unless you have it?” She recommended I send two or three statements for her to choose from. The article was sent to me on Wednesday night before it went live on “The Mighty”. I’m sharing with you all three of the answers I gave her to her question. I’m also sharing the link to the article at the end of my post.
I’ve often questioned “why me”, “why Parkinson’s”, “why now”. I’ve spent several of my counseling sessions asking my therapist these same questions. I don’t have the answers. She doesn’t have the answers. I don’t think anyone has these answers. But she did have a suggestion. She encouraged me to try to embrace this diagnosis as an opportunity. An opportunity to educate others…to bring awareness. So that’s what I’m doing. Using this platform to help others, and some days even myself, understand a disease that seems a bit elusive. Through this journey, I’m also working on being more authentic. So…here I go. Comment on here. Email me at nikki@justshakeitoff.com. Write to me on Facebook. Ask me questions. I’m opening myself up and will do my best to remain authentic….to completely embrace this disease and the opportunity it seems to be offering me.
“the mighty”
From Erin Migdol, “The Mighty”, editor:
“What’s something you don’t understand about living with Parkinson’s unless you have it?”
1) Unless you live with Parkinson’s Disease, you may not understand that the disease is bigger than just the tremors that many associate as the trademark of Parkinson’s. tremors are certainly the most visible symptom of the disease and it is terribly exhausting trying to still a body that doesn’t remember how to be still. But hidden underneath are so many invisible symptoms. There is a daily battle with fear, anxiety, insecurity, confusion and depression. I fight a random, trembling voice. I lose words mid-conversation…words I should know. I look and feel different than I used to when I walk. My right arm no longer knows that it should swing with my gait. Normal is no longer normal. The tremors are just the tip of the iceberg.
2) Unless you live with Parkinson’s Disease you most likely see it as an
“old person’s ” disease. I did. Until I heard those devastating words. Until I received my diagnosis 17 months ago. I thought it was something old people had. I’m 46. I have Parkinson’s Disease.
3) Internal tremors. I’ll bet that unless you live with Parkinson’s Disease you don’t even know that there is such a thing. Internal tremors. Sounds weird…right? It is weird. Extremely weird and extremely unsettling. Your outsides look somewhat stable and steady while your insides are an unstable, quaking catastrophe. I don’t even know how to adequately describe this strange, new development in my disease progression. I’m still trying to figure this one out.
Click here to read the article from “The Mighty”, by Erin Migdol
Never knew about the internal tremors. I can’t imagine all that you are going through. I hope and pray that relief is found for this horific disease. Love you. Nikki!❤
I didn’t know either, Betsy. They are a fairly new symptom for me.
I really wasn’t sure how to describe them to my neurologist.
Once I did figure out a way though, he knew just what I meant.
It’s a very unsettling, peculiar feeling.