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

 

 

 

 

 

 

 

 

 

 

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

Pounding Dr. Parkinson With Intense Exercise

Uncategorized

The Tampa Tribune’s Final Counteroffensive

The late, great Gene Patterson commanded a tank in George S. Patton’s WWII army.

Patterson, 43 years later, commanded scores of St, Petersburg Times journalists to flood the bridges eastward into Tampa Tribune Land.

Gene broke the “Gentlemen’s Agreement” that for decades gave the Times newspaper sovereignty in West Tampa Bay– the Trib had exclusivity in East Bay.

Demographics dictated the move. To grow, the water-locked Times had to move east. Pinellas was becoming built out. There was only the Gulf of Mexico west.

The strategic intent was beautifully simple: The Times would be the only paper in populous and fast growing North Tampa Bay. (The Bradenton Herald and Sarasota Herald Tribune would continue to split South Tampa Bay,)

The comfortably profitable Trib, and its complacent owners, Media General of Richmond, were stunned.

The fight between the not-for-profit Times (owned by the school for journalists, Poynter Institute) and the for-profit Trib, went on for 29 years.

It ended May 3, 2016.

Times Leader Paul Tash, accompanied by armed security guards, entered the Tribune building and told staffers this: The Times had purchased the recession-crippled Trib and would shutter it immediately. There would be no staff-produced final edition, as had been the tradition when a paper died.

That saga flashed through my mind on Oct. 26, a lovely, loving evening at the fittingly named Love’s Artifacts Bar and Grill in South Tampa. The occasion was a Tribune alum party for Struby and me on the eve of our departure for a new home in Macon, Georgia.

Many of the Trib foot soldiers were there. That’s you Donna, Allyn, Michelle, Marilyn, Kirk, Kim, B.C., and so many more of my fine, talented staff.

I was privileged to be part of the Trib’s last counter attack against the Times. It came between the mid-90s and 2006, my final year as publisher.

The tips of the spear were Knight-Ridder alums, led by former Wichita Eagle Publisher Reid Ashe, a brilliant MIT grad turned journalist. His gift was attracting and empowering very determined combatants.

Reid got me as editor from The State. Advertising and marketing dynamos Steve Weaver (San Jose Mercury News) and Bruce Faulmann (Bradenton Herald) signed on. They joined an already solid executive team headed by CFO Kermit Kauffman.

That fortified team was the strongest I’d seen in my 30 years as an editor.

We threw the entire Knight-Ridder playbook at the Times in our counter offensive.

Customer obsession. Re-energized local news coverage. Hard-digging enterprise reporting and deep investigations. New attention to fast growing suburbs. Multimedia journalism with WFLA-TV. Solidified branding (“Life Printed Daily”).

It worked.

By 2006 we had record profits and growing reader and advertising market share. The Times took worried notice,

Then came the Great Recession and the triumph of online news and marketing. Media General, never comfortable managing its only competitive market, withdrew combat resources it had given the Tribune.

The rest is history.

A rollicking good fight it was. While it lasted.

 

Uncategorized

Macon, Georgia: Take One

The pickup trucks, everywhere.

Chromed. Uplifted. Ginormous wheels and tires. Throaty exhaust. Aggressive vehicles… and drivers to match.

Why so many? And SO gussied up?

“It’s not real exciting around here,” explained ace saleswoman at the splendid Ace Hardware on Forsyth Road. “Our trucks are an adrenaline rush.” (Not to mention, she said, a perfect, broadside target for the ubiquitous deer.)

The Macon community is human-scaled, rarely in a hurry. Not slow; just measured.

Polite is good here, most encounters at least so far. Nice community fabric to build a future on.

Some say the town is “cliquish.” That seems to connote long-timers versus not-so long-timers, as in 40-50 years. Go figure.

My wife has thrown the warm and welcoming members of our new seniors sub-community, stately Carlyle Place, for a bit of a loop.

The most senior remember her as Cynthia Jane Struby, daughter of the late and distinguished, long-time leader (president and publisher) of The Macon Telegraph. Daughter also of the late Jane Spearman Struby, every ounce a gracious, Macon mainstay of long lineage.

That smart Cynthia Jane went off to her own solid newspaper career in Columbia, S.C., Alexandria, Va. (managing editor before age 30), Charlotte and finally Myrtle Beach, S.C. She retired to raise her two boys, now men.

First with her closest high school friends, then at Furman, then later in newspapers, people called her Struby, not Cynthia. She liked it. (“I don’t see myself looking like a Cynthia.”)

She was “Struby” when I met and married her while we were both editors at The Charlotte Observer. (That was 38 years ago, for the curious.)

So here we are at Carlyle, our first week in town, arriving from Tampa. Struby is a clique “cross-dresser,” Old Maconite returning from 45-plus years in the Wilderness of other places..

Heads are spinning at wonderful Carlyle Place.

But residents will come to remember it’s “Struby,” not Cynthia.

 

 

 

 

 

 

 

Uncategorized

KASH, The Thelens’ Mover

Weird time it is at Chez Thelen/Tampa, Saturday, Nov. 4.

Packers have reduced our life to a series of 2-to-4-foot-tall, boxes– rows of centurions at alert. Movers come Sunday, led by 18-wheeling chap named Kash. KASH!!! (He gotta be packing heat inside his leather.)

Wheels up to Macon Monday, probably, maybe. All depends on the loading speed of KASH and his team.

New Carlyle Place home, 2700 sq. ft., awaits–half the size of Tampa home. Struby has blown up the kitchen, rejiggered the rest of house to fit her very clear vision. Getting great new blue, king bed, “Quincy” (by Ethan Allen, of course.) Quincy as in John Q. Adams. I spotted it. Love it.

My other treats are an under-construction Cigar porch (man cave) and a boffo audio system. (That’s you AV master, Jeff Smith.) Wolfgang and Grateful Dead will never have sounded better.

I make my first public appearance in Macon area Nov. 14. Forsyth Kiwanis club mini-speech on PD. Will dial down my “relentlessness” (re PD patient advocacy). Macon VERY conservative and quite polite.

Picking up new set of brain “mufflers” Monday from Midas shop. Mufflers to be grafted between my wicked cortex and too-often ribald tongue.

Mufflers are a survival necessity in a community whose headliner these days is Eric Ericson, Alt Right guru. (His home was picketed by two Trumpites because he would not endorse Donald’s candidacy. Yes, that sound you heard was my throat clearing.)

My PD is behaving well. First order of business next week, at Carlyle’s superb exercise facility, is finding a personal trainer. Must fill void left by end of 3-a -week Rock Steady Boxing and 2-a-week spinning in Tampa. (Only RSB program in ALL of Georgia is a bazillion miles north in Atlanta.) Exercise is my killer App against the Parkinson’s Beast.

To understate things, a tad, my Davis Phinney Foundation, patient-advocacy work in Georgia looms large.

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”

 

 

 

 

 

 

 

Uncategorized

PD Ups and Downs

 

In reporting “Counter Punch” I uncovered nuggets of invaluable information about managing my PD. The book, by the way, is in my body shop for rewrite. Basic information is the same. It demands more personalized storytelling.

In Fall 2016 my PD dealt me a wicked blow. My autonomic (involuntary) nervous system collapsed. Drinking water constantly (polydipsia), peeing incessantly (polyuria), hot flashes, spacial disorientation, equilibrium and balance kaput, further loss of touch and feel in hands. A nightmare.

It took nine months of hard work to recover. Personal trainer Jordan Brannon and Physical Therapist (Mad) Matt Lazinski pulled me through. By September 2017 I was better than new.

In the midst of my ANS horrors, I sold my precious Taylor Made golf clubs. I had wrongly assumed I would never recover my lost equilibrium and balance.

Wrong call.

I can again swing a club without falling over. Fortunately I have an earlier set I can use for fiddling around on a three-hole course at our new home in Macon GA.

My reading had not prepared me for this sharp, upward turn of events. After all, what about that chart of symptom severity that strongly suggested the disease course would be lockstep down?

Dr. Jim Davison, my Tampa medical Sherpa And drinking buddy set me straight over a beer-or-three.

“A chronic disease of almost any kind never moves in a straight line,” he counseled. “There are inevitable peaks and valleys. You crashed in 2016. You more than fully recovered in 2017. Expect those variations to continue.”

Aargh! Flash of light! Mystery explained!

Same thing happened to my Parkie Buddy Jerry Iwerks. Through a diligent exercise program he moved from so-called Stage 3 Symptoms to Stage 1.

Remember these wise words:

“When people describe Parkinson’s disease, they often define it as a disease that is incurable and without treatment to slow its progression,” says Dr. Peter Schmidt, chief research and clinical officer of the Parkinson’s Foundation. “You can change how Parkinson’s affects you, but it takes hard work and dedication.”

 

 

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The Tampa Humidor Trumps My Parkinson’s

It’s a 5,000 square-foot storefront hard by railroad tracks in a challenged part of North Tampa. Busch Gardens is two miles east along Busch Boulevard. I-275 is a short mile west.

 

A Cigar Store Indian silently greets you at the front door. You walk in to the rich aroma of cigars.

The staff is welcoming and endlessly accommodating. Coffee perhaps? A cigar recommendation within your budget?  Guidance on accessories from humidors, travel cases to butane lighters and cigar cutters?

Done.

The semi-circular bar faces two 45-inch TVs, always on to sports or  news. An oddly misspelled cigar maker’s yellow electric sign beckons. “Oliva Serie (cq) V bar.”

The bar comfortably seats nine. The Humidor’s gracious baristas are busy behind the counter, offering soft drinks, coffee, water, beer and wine—but no liquor.

The feel is comfortable and welcoming. Quiet readers occupy the 18 stuffed leather chairs and sofa.

The rectangular, 4×10 foot work table seats 8 laptop computer users.  They work mostly quietly, sometimes not. (That’s chatty me, sometimes.)

One of the six roundtables, with high chairs, is often the “Cribbage Place.” Cribbage is the Humidor’s signature card game, sometimes raucous, always spirited.

The Humidor opens at 9:30 AM for the coffee regulars (that’s you Golf and Cigar Connoisseur Robert) having their initial cigar of the day.

Activity grows around noon.  Lunch breakers enjoy a “stick” after their sandwich, (Pre-made Cubans are always available from the back fridge.)

Cribbage players are a backbone of the afternoon crowd. The evening gang is quite different, many of them young professionals.

The Humidor is a male hangout in tone and culture during the day. The occasional female visitor can expect full attention, respectfully. Pepsi Ron, often there, with wife Lorraine says, couples are comfortable because regulars sanitize profane language to fit the mixed-gender setting.

The never-ending parade of buyers, some staying, some not, run the gamut from blue collar to white, and everything in between. Think firefighters, chefs, nurses, day traders, painting-and-roofing contractors, moving-company honchos. The lawyers and doctors buy, but rarely stay. There is even a retired protestant bishop, who’s a Parkie like me.

Cigar smoking is backdrop to the Humidor’s main but mostly unspoken purpose. It’s a “Cheers Bar” place.

Regulars who still have hair, let it down. The conversation mix at the bar is mostly personal: estrangements, divorces, children, retirement, news of the weird, Bucs doings, the Rays playoff chances.

Politics talk is muted, especially since the divisive election of 2016. The very racially diverse regulars steer away from conversational flash points. Respect is a Humidor shared value.

Humidor camaraderie is medicine for the soul, and sometimes even more.

“I can no longer afford my anti-depressant medication,” says Mikey, the Humidor’s unofficial social chairman. “I treat my depression by being here.”

A Mikey specialty is baseball outings—beer, food, cigars at George Steinbrenner Field.

Conversation is easy. “You never meet a stranger here,” says deputy sheriff Robert.

“We’re family,” says Grandpa Ron.

The Humidor family has tended to me since my Parkinson’s diagnosis in 2014. Dropped pills. Man bag left atop my SUV. Misplaced lighters. They police my forgetfulness and inattention.

That’s you Mike and Mikey, Brian, Shel, Dennis, Harry, Pepsi Ron, Chuck, Coach, Dave and Dave, Todd, Steve, “Bish,” Reggie, Curtis and so many more.

I wrote this to the guys on the occasion of my departure from Tampa to Macon in November.

“You have been there for me, ups and downs, lost gear, withdrawn, exuberant.

“Please select a special cigar as a small measure of my gratitudefor your compassion and fellowship over years together at the Humidor Clubhouse for boys (mostly) of all ages.

“Present this card at the cash register as payment in full.

“With deepest regard,

“Gil”

I love Tampa Humidor and all it represents

For me, the Humidor is a place to write, read, quip. It’s a second home filled with delightful friends.

As my PD has ebbed and flowed, my mates have recovered things I dropped (most famously my wedding ring into a stuffed chair), helped me recover rolling pills and see it to that I leave nothing behind.

As we prepare to leave for our new home in Macon, GA, I know there will never be another Tampa Humidor in my future.

I love it for what it stands for and the many friends who make it so very special.

Adios, guys