Some time ago whilst I was sitting in Starbucks, a woman noticed the tremor in my right hand and asked, “do you have Parkinson’s disease?” I looked at her a little surprised captured in my tremor and answered “yes.” She proceeded to ask questions of which I answered freely. Most of the questions centered on PD and the fact that she has is a distant relative who was just diagnosed.
I get this kind of attention a lot, which I don’t mind, either people ask questions or those too embarrassed to ask. However, they reveal a slight smile with a look in the eyes and you can tell they know. And rest assure, that whether you ask outright or you’re too embarrassed to ask, you have a few things in common; either you know someone with Parkinson’s or know somebody, whom you feel might have it. That someone might be you!
So the relative in question was a sister-in-law who upon hearing her diagnosed, stayed in bed for two weeks, too upset to get out of her room. And here is this woman looking at me and seeing two extreme reactions to the same diagnoses. I know in my mind I was thinking the same thing. Upon leaving, she told me she would pray for me of which I thanked her. This was probably the first seed of inspiration to write about Parkinson’s.
So the gist of my story is this: I am like these individuals and all others who know. And depending on what day it is, I can go to extremes. So my therapy is to write and share these words and just maybe this will give those with a close connection to this disease a rhyme or reason as to ‘why’ and move forward. As T.S. Eliot wrote in ‘Little Gidding’:
“We shall not cease from exploration,
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
I didn’t set out to write about Parkinson’s figuring there was enough being said and written. But the more I told my story to friends the more encouragement I received. It wasn’t enough that others have written about this disease and their relationship to it, what mattered was, my story wasn’t out there for I had a voice and an obligation to write it.
For their understanding I want to thank family and friends for being there and patience in the fact that my life had changed and I now moved a little slower. To my fellow bloggers who encouraged my creativity in the blogosphere and to Mirja who always had an unending faith in my abilities as a writer.
Thank you, JC
5 thoughts on “Preface”
Thank you for sharing your story.
Thanks for your comments and for reading my story on Parkinson’s. It is always a pleasure especially if it helps others understand.
I read some of your blog. I love your ‘About’ page. All you had to do was mention Woody Guthrie and you had me! So I’m going to follow you!
Thank you, JC. I look forward to reading more of your posts.
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Enjoying the blog.
For me this road started when I was 20, during a physical a Doctor was asking family history of Parkinson’s and commented “If I didn’t know better I’d think you have Parkinson’s, but you are too young for that.” My rigidity and movement were noticeable then. It took 35 years to pass before I was refereed to a MDS (Movement Disorder Specialist).
I think the secret to this is just to keep moving/exercising. It was a bit of a shock to see my own change pre and post LSVT BIG physical therapy. Reinforced only way to delay symptoms is keep exercising as much as possible.
Thanks for stopping by, it’s always appreciated. 20 years old! I couldn’t even fathom being that young and feeling like I was feeling when I was diagnosed. And yes, you are right… exercise! Luckily I exercised before my diagnosis so it was easy to continue on.