How I’m Embracing My Parkinson’s Diagnosis as an Opportunity to Increase Awareness
There is one day every April (April 11) known as World Parkinson’s Day, which is 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 are lots of things I know today that I didn’t know two years ago. Lots of things about Parkinson’s disease. I’m sure just about any one of you reading this has experienced this type of “on-the-job training” in some capacity. Forced to learn about something you have only heard of, but know little about. But now — because of necessity or happenstance or just raw luck — you must become educated about it. That’s where I am.
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, and 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 below. Email me at [email protected]. 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.
While I wait for some of you to reach out, I’ll share with you a question I was asked a while back by an editor that reached out to me for a Parkinson’s publication. She asked me, “What’s something you don’t understand about living with Parkinson’s unless you have it?”
Here is how I answered her:
“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.”
A recent comment on one of my Facebook posts reads, “Strange as it may seem, Nikki, I believe you were chosen for this. And it’s as exciting as being the last one chosen for a team event…but worse, right? Your story is raw, but at the same time, it’s enlightening, encouraging and inspiring to those who might be going down the same road as you.”
I’m not going to lie or sugar-coat any of this and say that I’m grateful Parkinson’s chose me.
Far from it.
Frankly, I’m quite ticked off about Parkinson’s.
An opportunity to bring awareness by sharing my story.
And I’m grateful for those who choose to listen.
Follow this journey on Just Shake It Off.
Getty image via bruniewska.