The following series of Blog posts come from Jay Whiteside in Toronto, Canada where he keeps in touch with family and friends in a series of newsletters he’s named as ‘What’s Shaking’.  Jay has edited highlights from ‘What’s Shaking’ for us to hear firsthand how he is managing his Parkinson’s symptoms which were first discovered over ten years ago. He kindly gave me permission to post seven of his episodes here.

Robert Rodgers PhD
Founder 2004
Parkinsons Recovery

Episode 6: My Parkinson’s Kaleidoscope.

My other first is my beginnings of a “Parkinson’s Kaleidoscope” to help chart progress on the Parkinson’s journey. Where am I on this supposed progressive, degenerative voyage?

I’m aware of the random course my Parkinson’s symptoms appear to take. There’s no clear or predictable path to the journey. All sorts of different external factors affect change in Parkinson’s symptoms. Call them externalities. The externalities are not variables easily measured and they defy predictability. Each symptom  can be affected differently by externalities like emotional state, routine, current sense of self, level of exercise, nutrition, family status and feelings of support, among others.  

The current state and status of these relationships can’t be depicted as a histogram or a bar chart. I wish it were a periscope in which I could peer from great depths to see what lies ahead. The reality is more like looking into a kaleidoscope. 

So, I’m forced to make sense from an imperfect device…a kaleidoscope. To start building the basic viewfinder there’s got to be  an inventory of symptoms. 

Here’s mine – remembering that Parkinson’s cases are like snowflakes…no two are the same, they are merely a collection of similarities classified as “Parkinson’s”. This my snowflake…

I’m working to make sense of the journey and will have more thoughts on the Kaleidoscope in future Blogs.

My summer of firsts includes my first-ever effort at a series of short stories. I have no desire for a public career as children’s author, but I can see this becoming a private love affair of mine. I have (will have) some hesitation in sharing. Because I’d like it to be good.  But to be good, it will need to be vulnerable, emotional and personal, and we already know what I think about getting naked in public! Let’s see how this goes.