A person diagnosed with Parkinson’s faces an information jungle or information desert, or both.
The jungle is the overgrowth of often contradictory advice online. The desert is the absence of specific information on local medical and allied healthcare providers.
That list could contain generalist doctors, Parkinson’s specialists, urologists, physical therapists, occupational therapists, speech therapists, to name a few.
The first go-live is for the Parkinson’s community in Macon, GA, where the Me Over PD Foundation (MOPD) is based.
The MOPD Foundation is dedicated to assisting Parkinson’s sufferers live well with their condition. That requires patient education, a personal health plan, and a place—bricks and mortar or virtual—to assist a person fulfill their plan.
The website was four years in the making and involved dozens of students and faculty at the University of South Florida in Tampa and Middle Georgia State University in Macon.
The project grew from a blue-sky conversation with a fellow faculty member at the University of South Florida in Tampa.
The colleague, Coby O’Brien, is Master Advertising Instructor in the Zimmerman School of Advertising and Mass Communications. I was the Clendinen Professor of Critical Writing in the school.
We learned on that blue-skying day we shared another very strong tie: Parkinson’s. I was diagnosed with the debilitating, fast growing neurological condition in 2014. Coby’s father has had it for years longer.
We hatched the idea of using Coby’s upcoming Senior Advertising Class to address the information void that faced most newly diagnosed Parkies.
The students’ hefty assignment was to develop an educational campaign to supply missing local information and resources necessary to treat PD adequately.
Coby and I guided them to work and learn together as a real-world ad agency does for clients. They nailed the assignment.
Their solution was a new type of website that would guide Parkinson’s people from start to finish of their journey. On presentation day, Coby and I were short of sufficient superlatives to describe their accomplishment—as a team.
Meanwhile, my wife Struby and I moved in late 2017 from Tampa to a Continuing Care Community (Carlyle Place) in Macon, her hometown.
Enter Middle Georgia State University, an ambitious young university. Dr. Scott Spangler, an IT and computing professor, volunteered his students’ help.
Spangler saw MOPD as a teaching opportunity and perfect for his class’s semester-long Senior Capstone Project.
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.
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 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.”
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.
A local organization that uses the MOPD framework will need to develop and provide its own curated list of local resources and keep those lists complete and up to date.