”Without the quest, there can be no epiphany.” Constantine E. Scaros (Reflections on a Simple Twist of Fate: Literature, Art and Parkinson’s Disease)
The next time you are imagining the worst, look up the definition of imagination.” Robert Lyman Baittie (Tremors in the Universe: A Personal Journey of Discovery with Parkinson’s Disease and Spirituality)
Introduction: I am definitely stubborn or just simple-minded. I keep trying to write a description of Parkinson’s in a minimal space. I could even try to summarize it in one sentence by saying: “Parkinson’s disease is a complex neurodegenerative process that occurs more frequently in older adults, predetermined to develop slowly but never resting in its ruthless behavior, over time one develops some of the motor-related and non-motor-related symptoms; unfortunately, to-date modern medicines have been developed to treat Parkinson’s, but none have slowed-down its progression, although old-fashioned vigorous exercise (physical activity) can help to slow the progression; regrettably, for many others, the disorder progresses as it goes from being a bearable nuisance to becoming an unbearable, dreadful and despicable disease.” And I could leave it at this point. But I refuse to describe Parkinson’s so bluntly and without hope.
However, there have been considerable advancements in Parkinson’s research and management, offering hope for better treatments and outcomes. Much of what I read about and attempt to write about are the advances and discoveries made by scientists and clinicians studying Parkinson’s, combined with the tremendous hope and resilience of many of you living with this disorder. Thus, it should not be a simple task to describe Parkinson’s in a single page. And it is almost impossible to do it in a single sentence. But I keep trying. Consequently, I began thinking about what this “page” would resemble, and then started doodling and writing some words and phrases. The ‘overall’ task was to write something for the newly diagnosed person with Parkinson’s (and their care partner, family, friends, etc) and give them some straightforward facts, a little physiology, brief description of symptoms, and then a short overview of one path for treatment.
“realized while I was announcing myself to the group that I was conceding something profound: that the diagnosis marked an irreversible change in my identity, the moment that one version of me ended and another version” Jon Palfreman (Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease
But First, Two Stories: As a scientist, my research laboratory group and I worked for many years on several projects related to blood coagulation biochemistry/molecular biology and the pathology/physiology of venous thrombosis. As such, besides writing papers and grant proposals, I was always preparing updated versions of Powerpoint presentations to describe our research. I always wanted to keep the presentations simple yet I also wanted to convey the importance and relevance of our work. I would always have a summary slide where I would say that this described our work for the past 4-5 years. And without a doubt, some of the graduate students in the lab group were shaken-up that their entire PhD dissertation project could be summarized in a single slide. But it was done for a purpose because that was the foundation slide that the rest of the talk/presentation was built on.
As a medical educator, I likewise wanted to highlight the most important part of the lecture topic in a relatively few Powerpoint slides. I laugh at what I just wrote knowing for many years, I taught immunology to the first year medical students. They would cringe at my summary slides primarily because of the depth and detail needed to understand immune system topics. It certainly was not “rocket science” (no mention of either the first or second law of thermodyamics) but many thought immunology was ranked right underneath it in complexity and difficulty. One of my biggest challenges, and ultimate successes, was to describe the immune system in a single page; however, it took most of a fall semester to finally get it done to my satisfaction. If interested please see Figure 2 in Hall, Mary-Frances E. and Frank C. Church (2020) “Exercise for Older Adults Improves the Quality of Life in Parkinson’s Disease and Potentially Enhances the Immune Response to COVID-19.” Brain Sci. 10(9), 612 ;https://doi.org/10.3390/brainsci10090612..
Parkinson’s in One Page: The topic is not new, I have tried to summarize Parkinson’s in a short narrative a few times before.. The goal was to keep it simple, less detail, but enough for the newly diagnosed person to begin their journey with Parkinson’s. Education is the best first-step into this wicked disorder. It is not a simple disease, yet its path of destruction seems both obvious and devious into how the disease interferes with our brain.
If you have time to read the one-page summary, comments, criticisms, and suggestions, all would be most helpful feedback. thank you.
Here is the 1-page summary entitled:
•Parkinson’s Disease: A Complex Neurodegenerative Disease (click here for the PDF version);
•Parkinson’s Disease: A Complex Neurodegenerative Disease (click here for the JPEG version).
“Living with Parkinson’s is like walking on the beach as high tide begins its approach, with sand shifting under your feet. At the same time, the water hits your ankles, which challenges your balance and movement. Your life is being undermined by Parkinson’s; however, you keep going. Your new life’s goal is living with a high tide that never recedes; with time, it worsens. While you stumble, you do not fall or fail. Life has not yet been handed off to Parkinson’s; keep persisting, don’t give up, ever.” Frank C. Church
Cover photo Image by Frank Winkler from Pixabay
Journey with Parkinson's 
