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.

 

 

 

 

 

 

 

 

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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.

 

 

 

 

 

 

 

 

 

Uncategorized

Breakthrough on PD Patient Care

A dream for many of us is coming true in Ohio. OhioHealth, a nonprofit medical system, just announced construction of a 30,000 square foot, $12.1 million wellness center in Columbus. (Details below.)

The focus is PD and related maladies. It will be one-shop stop for “living well” necessities, such as exercise, diet and sociability.

The Me-Over-PD initiative in Tampa envisions such a center as the next step after patients are empowered with vital, local, self-care information. Similarly,  Benzi Kluger’s and Kirk Hall’s  team-based, palliative-care field test in Colorado, California and Alberta points in the same direction.

Michael Okun at the University of Florida is raising funds for a similar center at the University of Florida. Center planning is underway in Denver and Boulder, CO. David Riley’s recent InMotion center in Cleveland, Ohio, operates on similar lines. So does Parkinson’s Place in Sarasota, FL.

……………………………………………………………………………………………..

“Less than three years after opening the doors to the state-of-the-art OhioHealth Neuroscience Center at OhioHealth Riverside Methodist Hospital, OhioHealth is proud to announce plans for a first-of-its-kind neuroscience wellness center. The center will be located near the Riverside Methodist Hospital campus.

“The neuroscience wellness center will extend OhioHealth’s continuum of care for those living with neurological conditions – such as Parkinson’s, stroke, multiple sclerosis and others – by providing them with programs, equipment, education, and experts in prevention and rehabilitation to help manage their conditions and live more active lives.

‘”A patient’s care doesn’t stop when they leave the hospital or the doctor’s office,” said Dr. Janet Bay, system vice president, OhioHealth Neuroscience. ‘They need to stay active and fit in mind and body – physically, mentally, and spiritually. Our neuroscience wellness center represents our best vision for a place that can be the center of all of that for them. As leaders, locally and nationally, in the treatment of neurological conditions, our new center will impact patient’s lives in a new way and we are so very proud to be bringing it to those who will benefit from it.’

“Programs and classes at the center will include exercise, nutrition, stress reduction, yoga, caregiver support programs, and more. Additionally, it will bring already-established OhioHealth wellness programs, such as OhioHealth Delay the DiseaseOhioHealth Fore Hope, the OhioHealth MS Wellness Program, Staying Fit Following Stroke and Brain Injury and Gerlach Center for Senior Health clinics under one roof. The center will also serve as an incubator for development of new programming

‘”We have made a tremendous commitment to neuroscience in the communities we serve,” said Dave Blom, president and CEO of OhioHealth. “We have a passion for giving patients and their families the very best healthcare, no matter where they are on that journey. We believe wellness is a significant part of that journey and that the new neuroscience wellness center will be a big step forward in that area.’

“Preliminary plans call for a 30,000 square-foot facility including, but not limited to;

  • Two large multipurpose fitness studios that can be split for simultaneous classes
  • Indoor cycling (spinning) studio and indoor walking trail
  • John J. Gerlach Center clinic programs and support services specifically for older adults
  • An outdoor program area located immediately outside of the building

The new facility will cost $12.1 million to design and build with $10 million of that coming from the Building Strength for Life campaign led by the OhioHealth Foundation. The generous McConnell Foundation gift of $6 million represents 60 percent of that goal. Construction is expected to be complete in the next two years.

‘”We are pleased to be involved in such a critical and groundbreaking approach to wellness care in the field of neuroscience,’ said John P. McConnell, Chairman and CEO of Worthington Industries. “Our family believes in the vision of OhioHealth in providing exceptional care in the communities they serve. The neuroscience wellness center is another example of their leadership on healthcare issues that are important to all of us.’

“The McConnell family’s long-standing philanthropic partnership with OhioHealth spans nearly 30 years. Generous gifts from the McConnell Foundation, which now total more than $25 million dollars, have been instrumental in leading and advancing medical care innovations at OhioHealth. This latest gift will continue to ensure the OhioHealth neuroscience mission of delaying the progression of disease, improving outcomes, and reducing costs.

‘“We are filled with gratitude to the McConnell family for this extraordinary gift to support our neuroscience wellness center and the people who will benefit from the services,” said Karen Morrison, president of the OhioHealth Foundation and senior vice president, OhioHealth. ‘“We are inspired by the passion, dedication and generosity of John P. McConnell’s unwavering commitment to OhioHealth and to this community.’”

 

Uncategorized

Stress: PD’s Best Friend

I came across a cool column I share on the stress bugaboo.

Also, my new Georgia license late just arrived. SHFL ED.

Giggles!

When Living With Parkinson’s, Ax the Stress

When Living With Parkinson’s, Ax the Stress

Sherri Journeying Through

Stressed. This is what my thesaurus had to say: “To ‘stress’ is to emphasize.” Emphasize what? The fact that your life is out of control? The fact that you’re not handling things well?

Being “under stress” means that these two elements are wearing on you — being out of control and not handling things well. However, there is still some control. A minute amount, but then, are we ever really in control?

Perhaps something, somewhere, somehow, in some way is insisting on driving you crazy. More than likely it is we, ourselves, who are driving “us” crazy. We are the ones who insist on allowing something or someone, in some way, to get to us, to rob our joy.

For example, as I write this my husband and I are driving on Interstate 10, going from Phoenix to Los Angeles. We are going the speed limit at 75 mph. A Chevy Blazer with a roof rack piled high with camping gear and a back window with a sticker that says, “Desert Center Fellowship,” plus a license plate that reads “PASTOR,” zooms past. It is definitely exceeding the speed limit of 75 mph. This is after he has been tailgating us, we who are behind a semi-truck that is exceeding his speed limit. The first semi-truck pulls in front of another semi that is passing us on the right, then quickly passes the one in front of us and then pulls in front of him, cuts over to the left of him, and pulls in front of another car. It is moments such as this that drivers tend to get stressed.

I continue writing as my husband continues to drive. Approximately 10 minutes later, from out of nowhere, the Pastor of Desert Center Fellowship zooms by us once more, and once more, he swerves to the right to pass a car that is dawdling down I-10 at the much-too-slow speed of at least 85 mph.

Now, many drivers I know would be stressed by now. They are not merely under stress. They are stressing out big time, and at this point, it is their choice. At times like these in our lives, we allow stress to rob our joy. We allow situations and other people to insist on their agendas, hammer home their opinions, spotlight on the negative, underline our failures, dwell on our mistakes.

You know what I’ve learned that was refreshingly reminded to me today? People like “Pastor Desert Center Fellowship” don’t cause my stress. I do. Things like being cut off in traffic don’t cause my stress. I do. Situations like dirty dishes in the sink left for me to do don’t cause my stress. I do. I allow myself to “climb under” this stuff  — because I choose to. I choose to let it get the best of me and drag me down so that I fit under it, let it cover me, and dwell fitfully within it as it wraps its not-so-warm, fuzzy blanket around me. I have allowed it to define my moment, my day. I have become the “s” word: Stressed out.

I am so grateful God has not given up on me, that He still finds me teachable. I am grateful I have learned not to always give in to stress, as was once so easy to do. Now I am much quicker to recognize the hold it strives to have on me. If I allow it to cover me, if I climb under it, before I know it, I am not just “under” stress; it has begun to consume me, define me, highlight my life, insist on having its way, and ultimately, I have allowed it to steal my joy.

Disease. Loss. Pain. Financial burdens. Relationships. All things in life that can create stress, if we allow them. We cannot control everything, if anything. Stress allows us to deal with this “life” — this disease — ineffectively. What is effective? I have found two things to be most effective for me: Forgiveness and thankfulness.

I had a current, ongoing situation that had been stressful for me. After talking to a good friend recently, I realized I hadn’t forgiven the person with whom I had been struggling. I’d allowed the pain to grow because I’d sought control instead of forgiveness. I had allowed the situation to highly frustrate me, and at times, rob my state of mind, my joy.

Forgiveness! Do they deserve it? Not my call. Do I need to do it? You bet. By forgiving, I can find things in that situation for which to give thanks, and by doing that, my focus returns to its proper place — on God being in control. When the right perspective is there, joy overflows.

Is forgiveness easy? No way. Is it necessary? For me, yes. I don’t like the word that starts with an “s” and if I refuse to forgive, refuse to see the hard things in life to be thankful for, that “s” word takes control, consumes my joy, and I am nothing more than … stressed.

That isn’t where I choose to live. Joy is a much better state of mind and with all that a person who has  Parkinson’s has to deal with, don’t you think that’s a better place to be? Living with joy and axing the stress in your life?

Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids.

Uncategorized

Two Interesting Takes on Exercise

One is conversational and down-home by a retired physician. http://www.thegardenisland.com/2018/01/10/lifestyles/is-vigorous-exercise-a-miracle-for-parkinsons/

The other is denser.  http://longevity.stanford.edu/blog/2017/03/23/the-best-exercise-for-aging-muscles-the-new-york-times/

Both point clearly at the value of “forced exercise.” In plain English that means REALLY breaking a sweat.

Uncategorized

Seeking To Build A Middle Georgia PD Study Group

This post is adapted from a column published in The Telegraph (Macon, GA) on Jan. 1, 2018.

Parkinson’s is not a death sentence. It is possible to live well, or at least better, with this mysterious malady. Consider these ringing words from Dr. Peter Schmidt, chief research and clinical officer of the Parkinson’s Foundation:

“When people describe Parkinson’s disease, they often define it as a disease that is incurable and without treatment to slow its progression. You can change how Parkinson’s affects you, but it takes hard work and dedication.

“The key is taking charge of the disease by aggressively seeking the most expert care available and engaging your brain through rigorous exercise and mental conditioning.”

I am seeking Middle Georgia Parkinson’s people willing to accept Dr. Schmidt’s challenge to engage fully their PD and relentlessly fight back against the beast.

I am organizing a Middle Georgia group of Parkinson’s people willing to study the condition in depth and translate that learning into personal action steps. I am experienced in this area. I was diagnosed with Parkinson’s in 2014.

I was a leader of the PD Self National Training Program. http://parkinson.org/expert-care/Expert-Care-Programs/Empower-the-Newly-Diagnosed

I am a national PD patient advocate (Ambassador) for the Davis Phinney (Parkinson’s) Foundation. I work in Georgia, Florida and North Carolina.

My wife and I moved to Macon in November after 20 years in Tampa. I was a newspaper editor and publisher (the late Tampa Tribune).

I will start the Middle Georgia study group in January. If you are interested in more information please write me at gthelen1@icloud.com or call me at 813-787-3886.

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.

 

Uncategorized

A Cowboy’s Anchor Points

 

A fellow new to town needs anchor points to properly settle in. Kind of like a cowboy in the 1870s.

A fine stable for my horse (dual-turbo, Soul Red Mazda CX9) is close by. Macon’s Five Star Mazda refreshed Soul Red after her three hard days on the trail to Tampa, Columbia (SC) and Charlotte.

Provisions are well provided at the fine hard-goods store (Ace Hardware on Forsyth Road). My new electric grill for cooking steaks is on order.

Liquor for wind down comes from Pinebrook, a well-appointed and “clean” store also on Forsyth. “We’re one of only four American-owned package stores in Macon,” says owner Harold Atkinson. “Free ice for your parties. And I know wines.”

Soft Goods come from Jos. A. Bank at River Crossing Mall. The store is not quite as customer friendly as the Bank store in Wesley Chapel, outside Tampa. I have introduced myself four times to the Macon store manager. She has yet to greet me by name. The clothes are still fine.

Music for the soul is delivered by Jeff Smith at Sound & Video Solutions. The whole house Martin Logan and Bose sound system is extraordinary.

A place to hang my hat (ball cap in my case) is Carlyle Place, the beautiful and very lively seniors community near Wesleyan College.

This itinerant “cowboy’s” anchors in Macon are set quite nicely.

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