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

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!

 

Must Read, Parkinson's Disease, Parkinson's exercise, Research

PD Dyskinesias and Role of Inflammation in PD

Two interesting pieces just came across my electronic desk. One involves dyskinesia treatment. The other concerns growing evidence of the role of inflammation in PD.

They are worth attention.

https://www.acsh.org/news/2017/08/28/advance-treatment-parkinsons-disease-11749

https://psychcentral.com/news/2017/08/28/curbing-inflammation-may-reduce-risk-of-alzheimers-parkinsons/125250.html

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

Hall of Famer Okun Opines on PD Rx

I wondered this as I read the JAMA Network piece on best practices in PD care: “Who is this fluent writer plumping interdisciplinary PD care?” NEW recruit to the cause, I murmured to myself.

Nope.

Got to the author’s name at the end. No other than Shuffling Editor Hall of Famer, UF’s  Michael Okun.

More good work from the Chief.
Read and learn.
Davis Phinney Foundation, Palliative Care, Parkinson's Disease

PREPARE! Val Trumpets to Parkie Families

Shuffling Editor Note: This post is the work of Valerie Herrero, steadfast widow of Gerard Herrero. Gerard died May 26 from complications of his PD, diagnosed in 2005. Gerard never, ever gave in to his PD, which he and Valerie fully “owned.” The Herrero’s were headline members of the North Tampa PD Support Group. Valerie continues to serve as the email megaphone for the group and many other PD service organizations and individuals in the Tampa Bay area. Valerie is unstoppable when she seizes an issue and makes it hers. Here she recounts PD the journey she and Gerard had and offers lessons learned.

By Valerie Herrero

On Friday, May 26, 2017, my husband, Gerard Herrero, left the world, as we know it. Gerard is free from the Parkinson’s, cardiovascular disease and related autoimmune issues he and I wrestled with for 13 years.

PD started, as a nuisance twitching of one finger but gradually became challenging, trying and very ugly. There were shaking, freezing, balance issues; difficulty getting up from chairs; difficultly dressing, especially with buttons and zippers, socks and tennis shoes.

It became challenging to eat at home or in a restaurant. Holding tight onto objects such as cups and glasses, sandwiches, forks, etc. became an adventure.

As a care partner, you learn to modify and adapt. For example, this last year we moved his tax preparation, accounting services and financial advisory business to a home office after his PD worsened.

Weekly exercise became the top of our agenda with YMCA PD Spinning, Rock Steady Boxing, Tai Chi, PT, OT and walking. We mastered walking sticks and walkers to push forward. We were always looking for something new to try.

PD drugs started to buck Gerard. The last 2 years he had more off times than on times. Adjusting Carbidopa-levodopa dosages was unsuccessful. Some days he would take 12 – 14 pills in a 24-hour span.

Then in May 2014, his immune system went wacky. Gerard’s platelet count dove to dangerous levels. In December 2016, Gerard was diagnosed with Bullous pemphigoid Disease, an autoimmune skin disorder.

Words I leave for Parkies and their care community: Get PREPARED! PD is an ugly, malicious, humbling disease that causes other health issues and life trials. Whether you accept it or not, realize it or not, death is inevitable and one day it will knock.

Everyone needs to start assembling their team of doctors, creating a palliative action plan and finalizing an end of life care plan. Get all your documents in order: (medical, estate, will, wishes, organ donations, etc.).  You never know when it’s going to be your last breath.

No matter what stage of PD you are in……Please….. Please make every day the best gift you have. Create memories because time is precious!

 

Please take the time to live, love and laugh as if today is your last.    Don’t assume anything. Someone else higher up is in charge and has the master plan.