Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's Patient Care

“Counter Punch” Epilogue

 

Epilogue

 

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.

 

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Davis Phinney Foundation, Parkinson's Disease, Parkinson's Patient Care

PD Call To Action For Middle Georgia

Middle Georgia has the assets to become a model of excellence for the care of Parkinson’s disease sufferers. Our challenge is to mesh those assets into a true system.

April is Parkinson’s Awareness Month. An important awareness point is how little information patients often receive at diagnosis.

All too frequently, they get a prescription and are told to return in three months for a follow up consultation.

That’s it.

There is little guidance offered patients on finding valid information about the dread neurological condition or their future with it. Plus, there is no PD care system for them to enter.

Patients are left alone, very alone, with their incurable but treatable malady

PD is an ultimately unknowable condition. Each case is unique to the person. Mine is mostly internal, not readily visible. (intestinal, urinary, equilibrium, balance, temperature control)

I was diagnosed in 2014, eight or more years after, in retrospect, my first symptoms appeared. It often requires destruction of 70-80% of dopamine-producing neurons in the brain for full-blown Parkinson’s to manifest itself.

Dopamine is the chemical that aids nerves communicate with muscles, a kind of body-produced WD40.

The numbers about Parkinson’s incidence are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S.

Second most common neurological disorder after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of 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 can pool the university, health-care-organization and foundation 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.

An important marker of a state’s vigor in PD treatment, for me, is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises. North Carolina 19. Tennessee 9. South Carolina 7. Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care system.

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Palliative Care, Parkinson's Disease, Parkinson's Patient Care, Uncategorized

Heads Up Middle Georgia! Your patient-care problems are revealed.

Listen Up Middle Georgia!

We have important work to do assisting people “Live Well With Their Parkinson’s.”

Thirteen Parkinson’s people — patients and care partners— recounted their journeys to students at the Mercer School of Medicine Tuesday, March 6.

Bottom line: The Thirteen got scarce information at diagnosis about the disease or their future with it. Plus, there was no PD care system for them to enter.

They were left alone, very alone, with their incurable but treatable malady

Parkinson’s is the second most prevalent neurological disease after Alzheimer’s. Incidence is forecast to double in the next 20 years.

Georgia natives and residents are particularly at risk.

Agent Orange is a known causal agent. Georgia has large numbers of veterans who served in Vietnam and were exposed to Agent Orange.

Certain agricultural chemicals are also linked to PD. We are a rural, agricultural state.

A key answer and action step is to strengthen the teamwork between family doctors who diagnose PD and expert neurologists who prescribe a treatment plan.

Equally challenging is the lack of 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 can 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.

An important marker of a state’s vigor in PD treatment is the availability of an acclaimed exercise program named Rock Steady Boxing (RSB).

Florida has 32 RSB franchises; North Carolina 19; Tennessee 9; South Carolina 7; Alabama 6.

Until recently, Georgia had but one, in northwest Atlanta. Savannah and August are recent additions.

That’s unacceptable.

Georgia could vault to the front rank by strengthening the ties between family physicians and expert neurologists and by creating an effective, after-diagnosis care “system.”

Let’s start doing both.

Today.

 

 

 

 

 

 

 

 

 

Davis Phinney Foundation, National Parkinson's Foundation, Parkinson's Disease, Support Groups, USF

‘Me Over PD ‘ Is Born In Tampa

A Parkinson’s diagnosis is a shock. The lack of verified, actionable information easily available to People With Parkinson’s (Parkies in my vernacular) is even more shocking. This is especially true for highly localized treatment information.

A group of aggressive Tampa Parkies is changing that miserable equation. Dread disease, plus information chaos, no longer must equal existential terror.

Diane Cook, PD hero, pointed the way with her in-depth PD Self Actualization training in nine 2017 locales, including Tampa. Six Tampa graduates plus care partners, plus four Parkie recruits (and three care partners) have created a non-profit corporation that will deliver comprehensive, local-care guidance.

The back-story on this remarkable enterprise follows. (Full disclosure: I was a PD Self “facilitator” and convener of the Special Ops tribe managing this potential breakthrough in PD communicoation.)

Coby O’Brien is the senior advertising instructor at the Zimmerman School (advertising and mass communications) at the University of South Florida, Tampa campus. His father has PD.

Coby and I talked about how his senior advertising class could take on the challenge of remedying the “miserable equation” in the northern Tampa Bay region.

Thirty-plus students did in-depth research with extensive interviews of support groups, local Parkies and their Special Ops mentors.

Their proposal is to establish The Me Over PD project. The project’s digital and print products will reach newly diagnosed People With Parkinson’s with accurate, actionable, local information—little of which is available in most locales.

The project’s heart is a comprehensive database and a print brochure (The Roadmap or Guide) that directs newly-diagnosed Parkies to the database.

The Specials Ops “Tribe” will distribute the brochures at such possible locations as VA hospitals, drug stores, support/action groups, and agencies serving senior citizens, civic groups like Rotary, retirement communities, physician’s offices, The Y, and the Jewish Community Center.

Janelle Applequist, a Zimmerman School assistant professor, “owns” the database. Her graduate students will give it constant attention.

Me Over PD has filed for nonprofit incorporation and 501 C. 3 status. A Detroit donor has graciously contributed $5,000 for working capital.

That will be used to build out the website and print the guides. Launch target is the first quarter of 2018.

My Special Ops Tribe owes the USF students (and Coby O’Brian) an enormous debt of gratitude.

Thank you, guys. You are the best ad agency we could ask for.

 

Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise

Davis Phinney’s Madcap Tribe

Shuffling Editor traveled to Oklahoma City, aboard Delta, the airline that charges $25 for a checked bag but provides, free of charge, seats that recline into your nose and smash the service tray into your abdomen. His words and photos (purloined from Ambassador Rich Wildau) report on the Davis Phinney Foundation (Parkinson’s) Victory Summit (Dec. 8) and the meeting of DPF Parkinson Patient Advocates, grandiosely named Ambassadors. (Dec. 9) Correct spelling and grammar provided at no charge.

Davis Phinney: The Man and Inspirational Speaker

Davis Phinney
Davis Phinney

Trim, striking, composed. Rolling gait of an athlete. Secure, warm, modest, easy to meet. Straight-in-your-eye guy. Lives in the moment. Droll, funny and engaging. On this day, very deliberate in movement (bradykinesia). Some facial masking. His self-described “B” Game is anyone else’s “A+” Game. Master of stage– without pretense.

Davis Phinney: Visionary

PD World headed his way. Less about medicines, more about Living Well (with or without a malady). Teams are key—in a bicycle race, in his organization, for best health care management. Camaraderie essential for well being. Servant leader.

Davis Phinney: Tribal leader

His Ambassadors are fearless, brave, funny, child-like, relentless and madcap. God bless the whole lot.

Carl Ames
Irrepressible Ambassador Carl Ames in his Christmas suit
Ambassadors shake
Ambassadors shaking out their PD
Victory Summit
Victory Summit celebrants

 

 

 

 

 

 

 

 

 

 

Davis Phinney Foundation, Palliative Care, Parkinson's Disease, Parkinson's exercise

Pounding Dr. Parkinson With Intense Exercise

Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Uncategorized

Rock Steady Fighting to Survive in Tampa

Rock Steady Boxing (RSB) is thriving nationwide. Except in Tampa.

This proven, highly effective exercise program for People With Parkinson’s (Parkies, in my vernacular) is short of enrollees in Tampa. The monthly average is 10. The same class in nearby St. Petersburg (Pinellas County, to be exact) averages 34 boxers.

Program director Jordan Brannon can’t explain the difference. “Same metro area. Same people. I am puzzled.”

She told Tampa boxers their program will end December 31 unless 20 steadfast participants are aboard. That’s her breakeven financial number. She is redoubling her recruitment efforts in Tampa.

I am in the Tampa program. See below for the letter I wrote Oct. 18 to University of South Florida Health (Neurology). USF Neurology responded Oct. 24 (below).

The Rock Steady difficulties are the second setback for PD patient-care initiatives in Tampa Bay.

USF Health (Neurology) was chosen as one of nine national 2016-17 test sites for the PD SELF information-and-action training program for Parkies. Seven of the nine sites were renewed for 2017-18. Tampa was not. (I was a “co-facilitator” of the Tampa program for part of its run.)

Diane Cook, PD SELF program director, has written that results of the 2016-17 rollout “were very positive and showed significant improvement in self-efficacy leading to improved anxiety, depression, stress and perceived support.”

University of South Florida Parkinson’s Disease and Movement Disorders Center is a Parkinson’s Foundation National Center of Excellence.

My letter to Dr. Clifton Gooch, Neurology Director at USF Health follows:

Dear Dr. Gooch,

I write representing the urgent concerns of the 10 regular adherents of Rock Steady Boxing/Tampa.

We need the help of your physicians and staff to ensure the future of the Tampa RSB program. Program Director Jordan Brannon (a USF grad) told us Monday that the program is financially not viable. Unless there are 20 active participants by year’s end, the program will close.

Brannon said she will redouble her recruitment efforts.

Evidence is overwhelming and unassailable of RSB’s restorative power for PWP. RSB is expanding rapidly nationwide and worldwide. We will be an outlier should we lose the Tampa program.

USF Neurology, through the Parkinson’s Foundation (Miami office), has financially supported Brannon in creating and expanding her Largo and Tampa RSB programs.

We request USF neurologists redouble their efforts to bring RSB to patients’ attention. A physician’s push is vital in motivating PWP to commit to a rigorous and regular exercise program.

The Byrd Center is justly proud of its sponsorship of the growing Jewish Community Center programing for PWP.

We in RSB/Tampa request equal footing.

Urgently.

Sincerely,

Gil Thelen (on behalf of RSB/Tampa adherents)

Dr. Gooch replied Oct. 24 as follows:

Mr. Thelen:

The USF Parkinson’s center has always been a strong supporter of Rock Steady Boxing, so I am confused by your email. I am copying Dr. Hauser for his reply.
Clifton Gooch MD
Dr. Gooch’s response, in its entirety:
“Mr. Thelen:

“The USF Parkinson’s center has always been a strong supporter of Rock Steady Boxing, so I am confused by your email. I am copying Dr. Hauser for his reply.
“Clifton Gooch MD”

 

 

 

 

 

 

 

Parkinson's Disease

Bow Ties Pummel Parkinson’s

Cometh a long story about a short tie with large meaning.

I had favored bow ties for 50 years, since graduate school at Cornell Med in New York City.

My collection at peak numbered 37—Foulards, Quads, Links, Felts Pine, Paisley, Lorraine Stripes, Harrisburg Medallions, Snead Neats, Quicksilver Stripes, Becker Stripes, Brooks Stripes, Halstead Spots.

Roll those wonderful names off your tongue.

My bow ties had stories to tell.

I often wondered whether the late Steward Bryan hired me for Tampa because we both favored short ties. He tied his floppy, telegraphing casual elegance, Virginia-aristocrat branch.

(My favorite Bryan quip: “If I had known how rich I was, I would have been drinking better Bourbon all these years.”)

Bow tying ended abruptly for me due to Parkinson’s. My numb fingers could no longer tie a tie. My now-unused collection stared back at me, kind of angry.

Enter Randy and Veronica.

Randy is the founder of R. Hanauer Bow Ties in Fort Mill, SC, a Charlotte exurb. He made my bow ties for years.

Veronica is the skilled seamstress at the Jos. A. Bank men’s clothing store in The Shops at Wiregrass, Wesley Chapel, FL, a Tampa exurb.

A pop-up ad appeared on my computer screen in August. It was for a pre-tied bow tie, not an ugly clip-on.

FLASH!

I called Randy. “Do you by chance sell pre-ties?”

“Yes,” he answered.

“Can I buy several and would you convert my Hanauer collection to pre-ties?”

Certainly, he said. “Box them up and send them.”

Charge

“None.”

Wow!

What about the Brooks Brothers and Ben Silver bow ties I have? Could those be converted?

I showed Veronica the Hanauer pre-ties.

“Can you do the same for my 11 Brooks and Silver ties?”

“I’ll try,” she answered.

Yesterday I picked the 11 up.

Beautiful work, Veronica. I now have 20 very usable bow ties.

Add an “ankle-bitter” to my list of small ways to strike back at Parkinson’s, the disease that diminishes a person’s powers and saps control of their life.

Gotcha this time, Bruiser!