Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's exercise, Parkinson's Patient Care, Support Groups, Uncategorized

Four Steps To Revive PD Communities

Ed Note: The following blog is the work of Melanie Dizon of the Davis Phinney (Parkinson’s) Foundation. It is the first concrete plan I have seen that addresses restoration of social connections in Pandemic-stressed, Parkinson’s communities. Hats off to  Mel and her colleagues for a wonderful, just-in-time plan of action.

 

In the beginning, it was kind of fun, right? Or at least interesting.

You learned how to connect with your family and friends online.

Your Rock Steady Boxing coach, Dance for PD®  teacher, and your Pedaling For Parkinson’s™ instructor came through the internet and right to your living room or home gym for a safe workout.

You may have even tried out a new skill, picked up a long-ago loved hobby, or took up a new sport while you followed “stay-at-home” orders.

You even listened to those who said, “You can live well with Parkinson’s at a distance”, especially your doctors who you may have “seen” and spoken to even more lately because of the magic of telemedicine. (If we can keep and build on one thing from this crisis, can we please make it access to telemedicine for all!)

Fortunately, in the early days of the COVID-19 pandemic, you did continue to live well with Parkinson’s. You made a commitment to it. You promised yourself you would do it. And you vowed that nothing was going to get in your way.

But, nine or 10 weeks ago, you couldn’t know how much you’d miss hugs from your boxing mates, a fist bump from your cycling buddy after you survived a tough climb, or the knowing nod and the tell-tale creasing of the eyes when someone who truly gets you returns a smile. You may have suspected, but you never had to test out how important those physical connections are to living well with Parkinson’s.

Now you know.

And Zoom support group calls, YouTube videos, and online group exercise classes are starting to wear on you. And despite their widespread availability, so much so that you could fill your day with them if you wanted to, they are exactly no substitute for the in-real-life connections you crave.

Over the past couple of weeks, we’ve had more time than ever to check in with our Parkinson’s community and listen to them talk about their experiences and challenges. Without a doubt, the challenges that come from not being able to be in the same room together are at the top of the list.

So, while we know that we aren’t out of the woods yet, and that some of these online solutions will likely be with us for a while, we wanted to share four simple things you can do to feed your need and longing for in-person connections today.

(Note: Please check with your medical and care teams before you try any of these out.)

#1 – Find a walking/running buddy to add to your pod

While enclosed spaces have shown to be breeding grounds for the virus, recreating at a safe distance outdoors is fine for many people. Consider reaching out to a Parkinson’s buddy who enjoys walking or running, and who you know has been abiding by their state and CDC regulations, and schedule a daily or weekly run/walk and talk with them. Wear your masks, keep six feet apart, and have fun.

 

#2 – Have a coffee date in a parking lot

Missing a friend from your support group you haven’t seen in over two months? Invite them to coffee at a nearby school parking lot. Bring your own cup of joe and a mask, park at a safe distance, and either grab a seat on your hoods or bring some chairs so you can chat and catch up.

#3 – Pack a picnic

Invite members of your favorite exercise class to a picnic at a large park. Mark off squares that are six feet apart in all directions and have people set up blankets or mats on each square. Eat, stretch, play a question game, etc.

 

#4 – Play music, sing, meditate, draw, make

Do you have some Parkinson’s friends who play instruments, love to sing, are avid meditators, or just love to make things? Gather in a wide-open outdoor space with your favorite “tools” and see what happens. Sometimes just being in the presence of others you care about, even if you’re not doing the same thing, even if you’re not talking, is all you need to feel connected. Sometimes, it’s simply the shared desire to connect and seeing other people show up for you that’s all you need to start feeling like yourself again.

Not everyone will feel safe getting out in these ways. And as we said before, your care teams should sign off on this as they know your specific situation better than anyone. But, if you do get the all-clear, these are four easy to do but very meaningful ways of connecting in real life, for now.

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”

 

 

 

 

 

 

 

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.