Parkinson’s is not a Four-Letter Word
By, Margaret Preston, Power Over Parkinson’s
“Parkinson’s” is a word we say every day in our house. Whether it’s because we’re talking about our nonprofit, Power Over Parkinson’s (“POP”), or because we’re talking about my father, Gary, who is a person living with the disease. Before my father was diagnosed, we admittedly knew very little about the disease. Much like most many “civilians” (those outside the business of Parkinson’s), our knowledge about Parkinson’s started with Michael J. Fox, went to his foundation, and essentially ended with Muhammad Ali, and that was the extent of our very limited understanding (can we even call it that?) of Parkinson’s.
Fast forward to my father’s diagnosis in May of 2018, we jumped in full throttle by starting POP to serve others with the disease in Central Virginia through free and impactful programs. Our goal is to fill in the gaps between neurological appointments where people with PD (and their care partners, we can’t forget about them!) can find their community and partake in programs that ultimately help them live well with the disease. The silver lining of my father’s diagnosis has not only given me the opportunity to work with him, but it’s also been that it’s given me the opportunity to serve this truly remarkable community, which has been a personal honor over the years.
So, now we say “Parkinson’s” every day, multiple times a day – it has really become unavoidable. I do, however, want to reflect on my lack of knowledge prior to my father’s diagnosis. I think about why I didn’t know a lot about the disease, how I just associated it with a tremor (validating my very superficial understanding of the disease), and how we can do better in educating “civilians” as well as the next generation. I still find myself amazed at how much this disease touches, truly the whole person, and my head spins with its sheer complexity. Some of the disease obscurities worth mentioning that a patient could face include losing his/her sense of taste/smell, experiencing REM Sleep Behavior Disorder, and facing blood pressure issues(1) – just to name a few. If you’re reading this and you know a thing or two about the disease, you would have heard the saying that “if you meet one person with Parkinson’s, then you’ve met one person with Parkinson’s.” It’s truly a snowflake disease – no two alike – which only makes the criticality around creating awareness (ideally leading to funding in research) that much more imperative. Awareness and education are also crucial due to the fact that Parkinson’s is the fastest growing neurological disorder in the world, and it’s projected to increase from 1 million people living with the disease in the U.S. to 1.2 million in the year 2030(2). If you’ve read Dr. Ray Dorsey’s book, Ending Parkinson’s, and have heard him speak, the disease has become a manmade epidemic that we have to acknowledge and address. Dr. Dorsey ignites the fire in all of us to shout from the rooftops all we know about Parkinson’s, its projected and startling increase in time, and end the grossly incorrect stigma that its complexity begins and ends with a tremor that only older people face. (Again, let me point out, I believed this stigma to be true just seven years ago, so, I am not passing judgment whatsoever).
In the end, do I wish I didn’t have to say Parkinson’s every single day? Yes, absolutely. I think anyone who’s been impacted by this disease or is a loved one of someone living with the disease, would gladly take the magic wand and wave it if we could rid ourselves of this insidious neurodegenerative disorder. However, if it is through my father’s diagnosis, and subsequent founding of POP, that I have become educated in this disease that truly deserves the vast majority of humankind’s attention, I am grateful and find this journey, while difficult at times, so very worth it. Let the record show, Parkinson’s is not a four-letter word, so join me in saying it as much as possible, learning all we can about it, and creating the awareness that will be vital in finally changing the trajectory of the disease.
Cited Websites
(1) https://www.michaeljfox.org
We support POP at https://www.poweroverpd.org/together-for-sharon
Power Over Parkinson’s (POP) is a foundation supporting the use of exercise and wellness to reduce the symptoms or slow the progression of Parkinson’s Disease and other neurodegenerative disorders.
Subscribe to our YouTube channel to get at-home wellness exercises, hear advancements in Parkinson’s research and treatments through our leading POP Profiles series interviewing professionals, and more! – https://t.ly/zI2U