Metaphors help unravel Parkinson’s mysteries: Reflections from a prize winning reporter
Who is Gil Thelen?
Gil Thelen has been a journalist for more than 55 years, including a prizewinning medical reporter in Washington, a managing editor of The Charlotte Observer, editor of two South Carolina newspapers (Myrtle Beach and Columbia) before becoming editor of The Tampa Tribune in 1998. He was named to the Florida Newspaper Hall of Fame after his retirement as President and Publisher of the Tribune in 2006. He was Clendinen Professor at the University of South Florida's School of Journalism and Mass Communications, 2006-14. Gil was educated at Duke University and Cornell University Medical College. He was diagnosed with Parkinson's in 2014. He is founder and president of Me-Over-PD, a 501(c)(3) foundation.
His Parkinson's journey and website is located at ShufflingEditor
Metaphors Help Unravel Parkinson’s Mysteries
Parkinson’s is an insane condition. No two cases are alike—each unique like snowflakes. Noted movement disorders specialist Dr. David Riley calls it a ginormous salad bar of 100 different non-motor signs and symptoms— to mix and match.
Since my Parkinson’s diagnosis in 2014, I have relied on metaphors to make sense of the mind-bending PD world now embedded in my consciousness. In turn, metaphors guide my journey through the mystifying maze. Here are some lessons that I have learned along the way.
Educate, Empower, Collaborate.
The three-legged-stool metaphor is my constant reminder of the ingredients for living well, or at least better— with The Beast within.
Leg one is the informed and empowered sufferer.
Leg two is the collaborative, team-based and personalized health plan for each person.
Leg three is the bricks-and-mortar— or if necessary, virtual— Parkinson’s Center that locates and arranges the treatments called for in the plan— and also a center that monitors progress.
2. Simplify life tasks
It is vital to simplify life tasks. PD confuses us by taking away our ability to juggle— while sparing higher-order mental skills. We counterpunch by constantly and obsessively reminding ourselves to do the daily rituals that prevent falls— and worse.
Swing those arms… lift those knees... turn head and body together... eyes forward… give furniture wide berth… hands and arms tight to side— to avoid bruises.
The metaphor that animates my life
The three-legged stool is the central metaphor animating my Me Over PD Foundation’s just launched website for newly diagnosed sufferers and their families.
A person diagnosed with Parkinson’s faces an information jungle or information desert, or both. The desert is the absence of specific information on local medical and allied healthcare providers.
New Image of Parkinson from Acheson and Armstrong et. al.
Our website offers authoritative general information about PD. And it has—most crucially—the capacity to host a curated list of local resources tailored for the communities that chose to adopt our website in their work.
3.Create a personal health plan
The site has guidance for creating a personal health plan. It assists users in assembling the care team to fulfill the plan. The site helps sufferers and care partners to determine their approach to medical treatment, exercise, socialization, diet and life planning— among other things.
Our goal is to aid Parkinson’s sufferers gain a springboard to action no matter where they live. MOPD, a 501(c)(3) foundation, envisions the website supporting the “Prescription for Action” steps called for in the clarion book “Ending Parkinson’s Disease.”
4. Stay Connected
The MOPD website arrives as Covid-19 restrictions have made personal contact extremely difficult within Parkinson’s communities. It’s an online tool to recapture some of the vital camaraderie lost by the shutdown of in-person activities such as support groups, education programs and exercise classes.
The website offers links to major national PD organizations and clinical trials. Local resources are searchable by type (community, therapy, medical).
The site gives local Parkinson’s organizations a place to post their activities without having to build their own website. There is no charge for use of the MOPD framework.
Good luck on your journey and hope my metaphors help you on your journey.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
