I sat with 800 other Parkies and care partners at a Davis Phinney Foundation pep rally on a balmy Florida morning in 2017.
I heard a word that electrified me: persevere. “Persevere against the eroding power of PD,” the speaker said.
Tim Hague Sr. also challenged me to consider the powerful role “communities” play in a person’s life. He is a PD advocate/educator/motivator living in Winnipeg, Alberta.
Hague is best known for winning the first Great Amazing Race Canada with son Tim Jr. Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win the race had everything to do with Tim’s PD-related memory and organizing challenges.
To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/.
Tim referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.
I counted the communities in my life: Immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; Methodist church, The Portico; Rotary International; PD support group members; Florida newspaper editors; Golf group I once belonged to; Duke friends; Milwaukee Country Day School classmates. The list goes on.
Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to fuel my perseverance against Parkinson’s.
My life as a newspaper editor was about building strong, resourceful, resilient newsrooms committed to serving their geographic communities with accurate, timely and compelling stories.
My commitment to the Parkie community is service through reporting and advocacy onwww. shufflingeditor.com. “Service Above Self,” the Rotary motto, speaks to my deep investment in bringing PD SELF to the Tampa Bay region.
My friend Rich Harwood, president of the civic engagement Harwood Institute, wrote about my community commitments when I retired from the Tampa Tribune in 2006:
A good man, Gil Thelen, the publisher of The Tampa Tribune, retired last week, and it’s worth pausing today to think about his work and our own work. In my travels, I have known few people like Thelen who have been able to so authentically combine a sense of integrity, grittiness, innovation, and commitment to his profession and public life….
In a statement he sent around to colleagues and friends last week, Thelen used the word “joy” to describe his work. He said, “There must be joy in making the paper if customers are going to find joy in reading it.” He then called his colleagues “joy makers.”
Thelen is 67 years old. I don’t know very many people – of any age – who think of their work as making joy. Indeed, think about the words we usually ascribe to the topsy-turvy world of the news media; two that come immediately to mind are “sensationalism” and “hype.”
I work in two geographic and Parkie communities. One is the Northern Tampa Bay region (Hillsborough, Pinellas and Pasco counties) where Struby and I lived happily for almost 20 years.
The second is Macon, GA, where Struby and I moved in November 2017. Our new home is the splendid continuing care community, Carlyle Place.
We moved to be closer to family.
Struby is from Macon. Her brother Neil Struby and sister-in-law Hazel Struby live there, as does Niece Hazel Caldwell in nearby Forsyth, GA.
My brother Neil Thelen and family live two hours away in Atlanta.
Struby has potential help should my Parkinson’s progression go badly, such as severe dementia. I preach preparedness. I need to live it.
My Tampa Parkinson’s community revolves around eight Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the Mission Statement:
“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG). The group comprises eight Parkies and their care partners.
“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains.
“We will share and learn from one another’s action steps, such as second-and-more opinions, off-label medications, busting through bureaucratic barriers, and workarounds for diminished skills and loss of control.
“We will persevere. Promise made. Promise to be delivered.”
PDAG’s action program is development of a groundbreaking program Me-Over-PD (MOPD) to reach newly diagnosed people with Parkinson’s. Those newly diagnosed individuals will receive — for the first time anywhere — real-time, verified, actionable, local information to assist them in navigating this mysterious malady.
The consortium comprises Tampa graduates of the PD Self Actualization Program of the Parkinson’s Foundation and faculty of the University of South Florida’s Zimmerman School of Advertising & Mass Communications.
The unique purpose of MOPD to deliver locally actionable information and resources to newly diagnosed Parkinson’s patients and their care partners. Both are often overwhelmed with complex information about treatment alternatives.
The heart of MOPD is a live database of crucial resourcesthat include neurologists specializing in mobility diseases, physical therapists, speech therapists, occupational therapists, dietitians, and personal trainers.
No such database exists anywhere for the newly diagnosed Parkinson’s person and his/her general practitioner or treating neurologist. Existing “help lines” have limited highly local information and lack resources for constant verification and updating.
The database will be used to prepare a brochure (“Road Map”) distributed through hospitals, neurology clinics, drug stores, YMCAs, agencies for the aging and doctors’ offices, to name but a few.
The target audience, for starters, is Parkinson’s sufferers in the northern Tampa Bay region. Based upon lessons learned from the Tampa Bay rollout, MOPD intends to extend its reach by partnering with local and regional community support agencies.
We believethat newly diagnosed Parkinson’s sufferers can substantially increase the suitability of their treatments along with the quality of their lives if they are fully informed of what resources are needed, where these resources are available and how to access them.
MOPD is a Florida non-profit corporation. It received 501 C. 3 approval in April, 2018. MOPD has received a start-up contribution of $5,000 from a Detroit donor.
MOPD plans to be operational by the end of 2018. Janelle Applequist, assistant professor at the Zimmerman School is leading operations. I am president.
In Macon, Struby and I host meetings in which Parkies and care partners discuss the nuances of PD and design action steps to improve care for all patients in Middle Georgia. Those have included a lite version of MOPD resources and pursuit of additional exercise programs.
I am working with Mercer University’s medical school to improve Parkinson’s awareness among future physicians.
As of mid-2018, Georgia lacks a care system for patients to enter for guidance and assistance in making necessary lifestyle improvements. Those include diet, exercise, social engagement and mental discipline.
We are working to pool the university and health-care-organization assets we have in Middle Georgia and create our own ”system” of care.
Doing both would move us to the front rank of states doing well by citizens who are fighting back against their enigmatic malady.