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.
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Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Parkinson's Foundation, PDF, Research

The PD-Autoimmune Connection

Shuffling Editor note: I am intrigued by growing evidence that PD is an autoimmune disorder. This review article makes the point clearly. It appeared in Parkinson’s News Today by Magdalena Kegel.

“Parkinson’s disease may in part be driven by autoimmune processes, according to researchers who discovered that certain immune cells react to alpha-synuclein — a protein that accumulates in the brains of Parkinson’s patients.

“The findings, published in the journal Nature, raise the possibility that immunotherapy could be used to slow down disease processes in people with Parkinson’s. An immune reaction to alpha-synuclein could potentially also be used to identify people at risk of developing the disease.

“‘The idea that a malfunctioning immune system contributes to Parkinson’s dates back almost 100 years,” David Sulzer, PhD, a professor of neurobiology at Columbia University Medical Center and one of the study’s lead authors, said in a press release.

“’But until now, no one has been able to connect the dots. Our findings show that two fragments of alpha-synuclein, a protein that accumulates in the brain cells of people with Parkinson’s, can activate the T-cells involved in autoimmune attacks,” he said.

“The study, “T cells from patients with Parkinson’s disease recognize α-synuclein peptides,” suggested that immune T-cells react to neurons in which large amounts of abnormal alpha-synuclein has piled up.

“Together with colleagues at the La Jolla Institute for Allergy and Immunology, the research team took blood samples from 67 patients with Parkinson’s disease and 36 healthy controls of the same age and mixed them with fragments of alpha-synuclein and other neuronal proteins.

“The idea was to observe how immune cells present in the blood would react to the protein parts. While immune cells from healthy people did not react much to the presence of the nerve cell components, T-cells in patients’ blood reacted strongly to alpha-synuclein. This indicated that they had been primed to recognize the protein.

“The response could explain why genetic studies of Parkinson’s disease have repeatedly flagged a genetic region, which is responsible for the immune system’s ability to tell the body’s own structures from foreign ones found on microbes and tumors.

“Sulzer’s lab had shown three years ago that dopamine neurons have proteins on their surfaces that act as flags that aid the immune system in recognizing foreign structures. They suggested in 2014 that T-cells had the potential to attack these neurons in an autoimmune process.

“The new study provided evidence of how this might happen. According to Sulzer, the T-cells might start reacting to neurons when they start accumulating abnormal alpha-synuclein, mistakenly thinking they are a foreign structure.

“In most cases of Parkinson’s, dopamine neurons become filled with structures called Lewy bodies, which are primarily composed of a misfolded form of alpha-synuclein,” Sulzer said.

“Young, healthy cells break down and recycle old or damaged proteins,” he said. “But that recycling process declines with age and with certain diseases, including Parkinson’s. If abnormal alpha-synuclein begins to accumulate, and the immune system hasn’t seen it before, the protein could be mistaken as a pathogen that needs to be attacked.”

“But so far, researchers do not know if the immune response is what triggers Parkinson’s in the first place, or if it drives disease progression once the disease has been triggered by other factors.

“”These findings, however, could provide a much-needed diagnostic test for Parkinson’s disease, and could help us to identify individuals at risk or in the early stages of the disease,” said study co-leader Alessandro Sette, a professor in the Center for Infectious Disease at La Jolla.'”

 

 

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

Filling PD’s Information Hole

It’s time to target the information/care abyss awaiting most Parkies at diagnosis.

A group primarily of Tampa PD SELF graduates is teaming with a University of South Florida advertising class to find and recommend ways to fill that huge hole.

The project is an extraordinary opportunity to address the disconnect between PD diagnosis and orderly provision of validated information and appropriate care.

Coby O’Brian, a senior instructor in the USF School of Mass Communications, is dedicating an upcoming class to understanding the disconnect, then creating information campaigns to end it.

In short, the campaign’s intent is to identify and reach new Parkies, place solid PD information in diagnosing  physicians’ offices and provide PD-savvy mentors for the new Parkies.

The 33 students are divided into three-person teams. Each team will examine in depth the role and responsibilities of PD care providers, such as speech therapists or internists. The teams’ findings will be rolled into a recommended marketing campaign.

Each team will be assigned an experienced PD mentor. The mentor will meet with the team at least once in person. After that, the communications can be virtual.

The mentors will assist students understand how Parkies interact with medical care providers and vice versa. They will also help the teams develop their action plans.

A word about Coby, a one-time ad operative. He is smart, aggressive, sometimes brash, often loud……and relentless. Coby’s father has PD. Coby “gets” PD. I “get” him.

 

 

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

New Front, New Banner for Shuffling Editor

Shuffling Editor is opening a second front (Central Georgia) for my PD patient advocacy work—under a new banner (Davis-Phinney Ambassador).

I came to Tampa 19 years ago to help arrange the marriage of The Tampa Tribune, WFLA-TV and TBO.com in the News Center

I leave to fight back better against my Parkinson’s disease.

However strong my defenses, this unpredictable neurological disease will inevitably progress. The question is how best to slow it and bend its trajectory in the desired direction.

My wife Struby and I have purchased a home in Carlyle Place, a lovely and lively seniors’ community in Macon, Georgia. It is owned by the local hospital and medical complex Navicent.

It’s near stately Wesleyan College and not far from dynamic Mercer University. Higher education is in my blood, first as a student then as a journalism professor after retiring from the Trib in 2006.

PD is not a death sentence, as followers of this blog know. It is possible to “live well” with it, as the Davis Phinney Foundation says. I am doing so now.

Parkies globally are embracing improved exercise habits, diet, mental tools and social networks to punch back at this cruel condition. An increasing number of studies document our improved health and well-being.

“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.”

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

Dementia, however, remains a strong possibility at the end of the PD road. If that’s my fate, Struby has helping family in Macon and my brother and his family is 80 miles up the road in Atlanta.

Struby and I leave Tampa with wonderful memories of raising our two sons in Tampa Palms, Rotary service and involvement with Hyde Park United Methodist Church.

We retain our condo in New Smyrna Beach, FL. I intend to continue as Executive Director of the Florida Society of News Editors.

My Ambassador work for Davis-Phinney will include continuing contact with Tampa Bay Parkie activists and new Living Well initiatives in Central Georgia.

My newest community is six Tampa Bay 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 six 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 reach out to identify and mentor newly-diagnosed Parkies.

“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 aim to meet monthly to hear, discuss, engage and bolster the health and personal plans of one of our couples. Our conversations are confidential. We will be candid, challenging, confronting, caring, and loving. (Anyone who utters the weasel words “to be completely honest with you” will undertake 50 pushups.}”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, PDF

I Love P(d)F. Really!

i-love-pdf

I often wonder who’s reading this blog. But I rarely lift a finger to find out.

Walla!

Out of the blue, I am told I have several dozen readers at the New York City office of Parkinson’s Foundation, nee Parkinson Disease Foundation.

My recent scribblings, especially a satirical one about my prize-winning contest post, caused concern there that (1) I had gone bat shit (2) I was mad at PDF, my “employer” in Patient Advocacy and PD SELF or (3) A bit of both.

First, the bat shit issue. My pretensions did carry me away: virtuoso thinking and laugh-a-minute prose.

I apologize to all concerned at PF-New York. (No laughing down there at PF-Miami. I’ve got a zinger coming for you.)

A special apology to John Lehr, new PF CEO, whose last name I misspelled. I imagined him receiving this scurrilous stuff about me from two top aides:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa..? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize… for contributing to a commercial blog about Moving Day. It was their most liked post of the year.

“Since the money is ours, consider sending him an ‘Atta boy’ note as his consolation prize. He blusters but is a sucker for sentimentality.”

John did send me a gracious message about my work. Thanks, John, in all sincerity.

How about #2, the mad at PF supposition?

I love you Ronnie, Karlin, Melissa, Megan. We Parkies (or PWP in your preferred, clunky usage) bless you for your wonderful website, accurate and informed free publications and advocacy on our behalf. You’re the best!

Now for #3, which is close to right.

I’ve experienced too many dropped balls on fundamental management practices: Unreturned phone calls and messages; lengthy delays on expense checks; vague commitments like…PF exec to me: “How about I call first thing tomorrow morning?” I say I’m available from 5:00 a.m. to 10:30. Call comes at 10:10; lasts until 11:00, cutting out half my exercise class.

As for PF-Miami, you dispatch a staffer to Tampa Bay to prepare for 2017 Moving Day. You don’t think to tell me, the PF PAIR in the region. PD community asks, “Who is this other PF person.” I plead ignorance, appearing to be the veritable turnip truck driver and PF the turnips spilled on the road.

In closing, a gratuitous (perhaps) memo from a former newspaper CEO to our new PF CEO, John Lehr:

Merging organizations is a huge change effort. I’ve done it. Get your elevator speech ready ASAP. Ground it in core values. Speak it relentlessly.

About the time you can’t say it one more time, it starts, yes STARTS, sinking in.

PF, I’m with you for the long haul. Make me proud always.

Remember we Parkies push back at our condition with love, laughter, hope and prayer, to paraphrase my email signer.

I love you guys, every day, always.

But loosen up AND amp up your sense of humor. Please.