August 17, 2014 | by Darcy Blake | I had to laugh when I read George L. Johnston’s book, The Unexpected Journey, Living on the Edge of Life’s Promise. Johnston, a person with early onset Parkinson’s disease goes absolutely bonkers at the idea of someone calling him a “Parkie”, which he writes is “a diminutive description” for someone who has Parkinson’s Disease. The very idea of Parkie sets him on a tirade of professional substitutes which he’d rather you use when describing him. As I reflected on nicknames that have annoyed me, I thought of an old boyfriend once called my knees “wholesome.” I may not be a model, but I’d rather not be seen as “wholesome.” I’ve never cared for the term “Princess” either as I’m not aristocratic material.
What’s in a name? The power of a name has long been commemorated in the the arts. If you are a Kabalarian you believe that when language is used to attach a name to someone this creates the basis of mind, from which all thoughts and experiences flow. As much as we’d like to control life with the perfect name, life steps in assigning nicknames that annoyingly stick regardless of preference.
To me, a person with Parkinson’s Disease describes a person with an abundance of determination, faith and a commitment to helping all those with a similar affliction. It is a name that is bestowed on only 1.5 to 2 million people who are diagnosed with PD in the United States. The young onset (diagnosed before age 40) are a small part of that number who float to the top of the list having endured the hardship the longest. A Parkie is an esteemed nickname that I’m honored to know, but we’re all entitled to our naming preference.
That aside, The Unexpected Journey, Living on the Edge of Life’s Promise has possibly the best definition that I have ever read —four and a half pages— on what it is like to be tired when you have PD. This essay is so effective, once you get everyone to read it, you will never suffer from the discomfort of your family and friends nagging at you to trudge on an extra minute, or meet Aunt Rosie one more time, or any other endurance test they may ask of you. I won’t spoil it for your future reading enjoyment, other than to say to read it is to know it.
Johnston’s wry humor surfaces frequently such as when he describes his former gambling addiction, “you want the sweet feeling of relief that passes through your body when you get the ‘hit’ of additional dopamine.” When away from his writing, Johnston serves on the Board of Directors of the Parkinson’s Association of Northern California, and is an active community member working with associations and businesses to further understanding of neurodegenerative conditions. His outlook is definitely unexpected as he addresses Parkinson’s Disease, “We drink deeply of what life has to offer whenever we can lift the cup.” A toast is in order for this writer’s feisty courage!
To watch a video of Johnston and buy the book: http://unexpectedjourney.net
About Parkinson’s Women Support
The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are either Parkinson’s Disease patients or caregivers. Check out our Facebook page at: https://www.facebook.com/parkinsonswomen