I think it’s great to be flawed. I am hugely flawed, and I like it this way. That’s the fun of life. You fall, get up, make mistakes, learn from them, be human and be you. Priyanka Chopra
I’ve been very fortunate to have good people in my life, and when you find good people, you gotta hold onto them real tight. Lana Condor
Introduction: A few years ago, I met Casey Hribar, a dynamic and intelligent University of North Carolina (UNC) medical student writing for a disease blog site named “ParkinsonsDisease.net” (click here to go to blog site).
Immediately, I was amazed at Casey’s understanding of Parkinson’s, and we decided to write a narrative review article together. With the assistance of Prof. Peter Cobbold, we published our collaborative writing experience in 2020: Hribar, Casey A., Peter H. Cobbold, and Frank C. Church. 2020. “Potential Role of Vitamin D in the Elderly to Resist COVID-19 and to Slow Progression of Parkinson’s Disease” Brain Sciences 10, no. 5: 284. https://doi.org/10.3390/brainsci10050284 (click here to download a copy of the paper for free). The article has been cited by other authors more than 90 times, and according to the Altmetric Article Metrics site, it ranks in the top 5% of all outposts scored by this site. Dr. Hribar received the MD/MBA from UNC in 2023, and she is now a Resident Physician in Pediatrics within the Johns Hopkins Medicine system in Baltimore, MD.
The most beautiful things in the world cannot be seen or even touched. They must be felt with the heart. Helen Keller
ParkinsonsDIsease.net and Health Union: Additionally, Casey recruited me to join ParkinsonsDIsease.net, a part of Health Union, as a contributing author and moderator for folks writing in for answers to their questions about Parkinson’s. Health Union. LLC was founded by Tim Armand and Olivier Chateau to create an online health community model aimed at giving benefits to patients, caregivers, and healthcare industry partners.
Recently, Health Union “paused” the authors and moderators from the ParkinsonsDisease.net site as they changed the direction and output of the site. They hope to resume these activities in the future. Several aspects of the economy and necessary changes in the organization’s current needs mandated this alteration. I genuinely admire Health Union’s philosophy as they have found a unique role and voice in helping others with many diseases. Hopefully, the site for Parkinson’s will sustain itself in the Parkinson’s community because it has an innovative and supportive perspective that other Parkinson’s sites do not possess (In my humble opinion).
Those who don’t believe in magic will never find it. Roald Dahl
My Blog Posts for ParkinsonsDisease.net: Below is a list of the blog posts I wrote for them from 2019-2023. My focus was more general than the topics I usually write about in the “Journey with Parkinson’s.” It was essential to remember that the audience was likely different than my blog’s readership and probably more interested in getting the ‘big picture’ about Parkinson’s rather than the detailed comments I typically make in my blog posts. They also had a maximum word count for each story, substantially shorter than my average blog post. Therefore, I altered slightly my message and intention in the blog posts. However, the usual readers of this blog may find some of these stories helpful in enabling their journey with Parkinson’s.
View the complete linked list of my published blogs from the Health Union ParkinsonsDisease.net site: Click here.
From 2019:
“Life with Parkinson’s” was published on 02/15/2019.
“How I Deal with Chronic Pain in Parkinson’s” was published on 03/21/2019.
“Primer on Parkinson’s: Back to the Basics” was published on 06/18/2019.
“Primer on Parkinson’s (Part 2): Motor-Related Symptoms” was published on 07/18/2019.
“Finding the ‘Fun’ in Sexual Dysfunction with Parkinson’s” was published on 07/26/2019.
“A Checklist for Supporting Someone with Parkinson’s” was published on 09/13/2019.
“Facing the Reality of the Parkinson’s Diagnosis” was published on 10/18/2019.
“Primer on Parkinson’s (Part 3A): Non-Motor Symptoms” was published on 12/06/2019.
From 2020:
“Primer on Parkinson’s (Part 3B): Non-Motor Symptoms” was published on 01/03/2020.
“New Year with Parkinson’s: Words Worth Living in 2020 & Beyond” was published on 01/10/2020
“Primer on Parkinson’s (Part 3C): Non-Motor Symptoms” was published on 03/10/2020.
“Celebrating World Parkinson’s Day (April 11): The Life and Times of James Parkinson” was published on 04/10/2020.
“Quotes on Hope, Positivity, Loving Others, and Living with Parkinson’s” was published on 09/07/2020.
From 2021:
Finding Strength During Parkinson’s Awareness Month” was published on 04/09/2021.
From 2022:
“Thriving and Living Well With Parkinson’s During These Stressful Times“ was published on 01/27/2022.
From 2023:
“Understanding Your Diagnosis of Parkinson’s Disease was published on 03/23/2023.
“How I Manage Chronic Pain and Parkinson’s Disease was published on 03/23/2023.
“My Problem with Parkinson’s Disease and Spatial Awareness” was published on 06/08/2023.
“Parkinson’s Disease Convinced Me It Was Time to Retire” was published on 08/08/2023.
“Retired Life in the Presence of Parkinson’s Disease” was published on 08/09/2023.
To succeed in life, you need three things: a wishbone, a backbone, and a funny bone. Reba McEntire
We Connected at Connexion: Every year, the Health Union organization has a meeting whereby the various diseases covered under their evolving banner meet in person or virtually. I was able to attend this meeting in 2019. I had some quality interactions with our Health Union ParkinsonsDisease.net leaders/advocates, Kate Leonard and Chris Hall, and spent time getting to know some of my fellow authors, Dan Glass, Karl and Angela Robb, and Tom Sheppard.
I left this meeting feeling good regarding my fellow co-authors’ commitment to write about Parkinson’s. They each had a natural strength that helped drive them forward daily amid Parkinson’s or in the role of Care Partner. The picture below shows our enthusiasm for the opportunity to meet. Note: For the past few years, Lauren Ruffalo and Chris Hall have done a fantastic job managing the Parkinson’s disease site.
“Somewhere, something incredible is waiting to be known.” Carl Sagan
Closing: Regardless of whether you are a gifted writer or cannot finish writing a 1-page narrative, your voice, comments, and message are appreciated. Your expression describing your life with Parkinson’s is worth the effort. You bring sincerity and power with your words by telling a story or describing an event about Parkinson’s. Keep searching for the venue to post your life accounts because we can never run out of Parkinson’s storytellers.
“The greatest wisdom is in simplicity. Love, respect, tolerance, sharing, gratitude, forgiveness. It’s not complex or elaborate. The real knowledge is free. It’s encoded in your DNA. All you need is within you. Great teachers have said that from the beginning. Find your heart, and you will find your way.” Carlos Barrios, Mayan elder and Ajq’ij of the Eagle Clan
Cover Photo Image by ❄️♡💛♡❄️ Julita ❄️♡💛♡❄️ from Pixabay
Journey with Parkinson's 
Lovely post.
thank you, Frank
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