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Two Extraordinary Parkinson’s Warriors

The Parkinson’s world has an inordinate number of compassionate and purpose-driven people. They  modestly embody — every day– the Rotary International touchstone of “Service Above Self.”

I consider four extraordinary: one in Florida and three in Denver, CO. The Floridian is Dr. Michael Okun, the whirlwind University of Florida neurologist, organizational leader and best-selling author.

One Coloradan is Diane Cook, visionary creator of the PD SELF training program for Parkies. She is joined in my PD Hall of Fame by Denverites Benzi Kluger and Kirk Hall.

Benzi and Kirk are joined at the hip–Benzi the doc and Kirk his patient and collaborator. I was happy to enlist in the Benzi/Kirk mission to reframe Palliative Care as a life-enhancing approach to PD patient care.

Benzi and Kirk are artfully profiled in a recent University of Colorado publication. Please read:

https://www.uchealth.org/today/2017/07/31/palliative-care-for-patients-with-neurodegenerative-disease/

You will be astonished at the depth and importance of their work together. I am privileged to call  them friends.

 

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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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More Tampa Bay Fitness and Education Options


USF Health and the Jewish Community Center are expanding the reach—but lowering the cost—of their PD exercise programs. Classes include Tai Chi, Stretch/Strengthen, Nia, Water and Movement, and Caregivers Support group. (Nia combines dance, martial arts and mindfulness.)
Classes are offered at both JCC campuses: Citrus Park, 13009 Community Campus Drive, and South Tampa, 522 N. Howard Ave. The cost to participate in all the classes is $20 a month or $100 for six months. Further, registration provides a PD Wellness membership at the JCC. The USF/JCC program is aided by the Edmond J. Safra National Parkinson’s Wellness Initiative. To learn more or register for classes, call Crista Ellis at 813-396–0765 or email PDwellnessinitiative@gmail.com.
 
An intriguing educational event is at the JCC Howard Avenue location June 11 from 2:00 to 4:30. The subject is “Taboo Topics of Parkinson’s Disease: Physical Intimacy & The Green Alternative.” Loosely translated that’s, marijuana and sex. Speakers are Dr. Sherry Leib and Dr. Selim Benbadis. Call Crista Ellis at 813-396-0765 to RSVP.
 
My PDF SELF buddies sing the praises of a recent speaker at their program: USF’s Dr. Angela Hill. She’s speaking June 28 at the Byrd Institute, 4001E. Fowler Ave. Atrium room. The topic is “Facts and Fiction About Traditional and Contemporary Treatment Approaches for Parkinson’s Disease.” Prescription, Herbal & Vitamin Approaches. Contact again is Crista Ellis, 813-396-0765.
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Fed-up Parkies Take Action

The following post appears on http://www.parkinsonalliance.org/weblog/
Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.
We “Parkies” never forget the date that we heard the words.
“You have Parkinson’s disease.  Progressive and incurable. But it is treatable.”
Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.
No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
Lesson learned:
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Good luck.
That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.
University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.
PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.
Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence.  You can live well despite PD.
Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.
I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.
Our challenge is to find newly diagnosed Parkies and connect.
We are committed. We will find our way. We have so far.
– Thank for Gil, for your Parkinson’s voice.  For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.
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PD Warrior Down

Tampa Bay Parkies lost an MVP during Memorial Week.  Gerard Herrero went out swinging, 10-plus years after diagnosis.

Gerard and spouse Valerie have brought enormous energy and activism to the North Tampa Support Group. Their signature is spot-on learning programs and a very special, group camaraderie.

Gerard’s memorial service is Friday June 16 at 2:00 p.m. Place is St. Timothy Catholic Church, 17512 Lakeshore Rd., Lutz, FL 33558.

GerardI am honored to speak at the service. My words will be these:

I speak about Gerard Herrero, my steadfast friend, fellow mischief-maker, lover of Valerie, and a man who never, ever gave up or gave in to his Parkinson’s.

Diminutive, yes, but Gerard filled a room with his great wit and imposing intelligence. He missed nothing. His distinctive and twinkling eyes darted and danced.

He unerringly dissected the bull shitters, the self-serving and the pretentious. His cause was the welfare of fellow Parkies.

We both loved a bumper sticker meant for dog lovers. It says “Obedience School Dropout.” Gerard WAS a dropout from the “False Obedience School.

If I ever needed a forensic accountant to smoke out wrong doers, I would call Gerard in an instant. He would shred the bastards. And he would do it with modesty.

I divide our Parkie world into two quite distinct camps. The ones I call horizontals get their diagnosis and retire to the sofa and meekly submit to Parkinson’s. They let the Beast take them down system by system.

The verticals stand up, get moving and are determined to counter every nasty punch. They are the counter punchers, the verticals.

Gerard was a counter puncher, a steadfast vertical. He never, ever gave up or gave in.

I intend to dedicate the Parkinson’s book I am writing with my wife Struby to Gerard’s memory.

I love you pal. We’ll get together later in another place and have a very merry time together.

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Half-Full, Half-Empty-Glass News About PD Mortality

Finally, there’s good guidance on what Parkinson’s means for Parkies’ life span. Parkinson’s Weekly says we’ll have a year less time those  without PD.

The Weekly’s report follows:

“People with Parkinson’s disease and related dementias are more likely to die younger than those of comparable age in the general population, often of ills linked to their neurological disease or of cardiovascular problems, a recent study by the Mayo Clinic found.

“Specifically, Parkinson’s patients can have their lifespan shortened by about one year, the researchers reported, while those with Lewy body dementia and Parkinson’s disease dementia were seen to die about four years earlier. On average, these people lived about two fewer years than others in the general population. Those with multiple system atrophy with parkinsonism had the greatest mortality risk, dying six years earlier on average than study counterparts without the disease.

“The findings, in the study titled, “Survival and Causes of Death Among People With Clinically Diagnosed Synucleinopathies With Parkinsonism: A Population-Based Study,“ were published in the journal JAMA Neurology.

“’As doctors, we want to be able to counsel our patients appropriately when they ask, ‘What will happen to me?’” Rodolfo Savica, MD, PhD and leading author of the study, said in a news release. “Understanding long-term outcomes can help clinicians better inform patients and their caregivers about what to expect.’”

“Researchers used the Rochester Epidemiology Project, a collaboration of patient volunteers and clinics in Minnesota and Wisconsin, to identify people living in Olmsted County, Minnesota, who received a diagnosis of Parkinson’s or related conditions from 1991 through 2010. They then compared patients’ data with that of age- and gender-matched healthy controls.

“The analysis showed that, over that period, 461 individuals were diagnosed with synucleinopathies (309 with Parkinson’s disease, 81 with Lewy body dementia, 55 with Parkinson disease dementia, and 16 with multiple system atrophy with parkinsonism).

“During follow-up, 316 (68.6%) of the total number of patients and 220 (48.7%) of the control individuals died. The most frequent cause of death among patients was their neurological disease (31.5%), followed by cardiovascular disease (15.7%). Most healthy controls died of cardiovascular disease (25.5%).”

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Why Not Become A Neurologist?

I received unsettling news from two former golf companions this week. Both have been diagnosed with Parkinson’s disease.

Advice, they asked?

I shared completed portions of a planned short book about my PD journey: “Counter Punch: Sparring With Parkinson’s.”

Same week, I met a Medical Resident during a visit to USF’s excellent Physical Therapy and Orthopedics Departments. We exchanged emails about our conversation. I learned her MD father is a Parkie, for more than 20 years.

I wrote this to her:
“Neurology is exploding with progressive, treatable but incurable disorders. You know the list.

“Treatment protocols are difficult/impossible to write due to the idiosyncratic nature of individual cases. The best answer, short of a cure, is doctors committed to patient-centric, interdisciplinary, holistic and neurorestorative care.

“I call to your special attention Chapter 3 of “Counter Punch” on Tom Graboys. He is the “Caring Doc” model for many of us. I sense you will become that no matter your chosen field.

“I have copied Dr. Michael Okun on this letter. He heads the superb mobility disorders center at UF.

“I consider him a genius in all PD matters that count. Perhaps after your internal medicine residency at USF, you could train to become, ultimately, an MDS.

“To unfairly tug on your heartstrings, your Parkie-Dad-MD might be honored by a choice of neurology. Forgive me for that nudge; I am an overly passionate, patient advocate.”

Okun, true to his legendary form, answered in minutes.

“Great idea!”

 

 

 

 

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Calling All Mammalian Congregators

My wife Struby and I are reading a fascinating book:

 

A General Theory of Love
by Thomas Lewis, MD; Fari Amini, MD; Richard Lannon, MD
Vintage Books (C) 2000

In it we learn the neurophysiological reason that properly structured support groups, such as PD SELF, are so vital for overcoming health challenges. Read on (emphasis added):

 

“…. One study, for instance, found that social isolation tripled the death rate following a heart attack. Another found that going to group psychotherapy doubled the postsurgical lifespan of women with breast cancer. A third noted that leukemia patients with strong social supports had two-year survival rates more than twice that of those who lacked them.

 

“In his fascinating book Love & Survival, Dean Ornish surveyed the medical literature on the relationship between isolation and human mortality. His conclusion: dozens of studies  demonstrate that solitary people have a vastly increased rate of premature death from all causes — they are three to five times likelier to due early that people with ties to a caring spouse, family or community.

 

“With results like these backing the medical efficacy of mammalian congregation, you might think that treatments like group therapy after breast cancer would not be standard. Guess again. Affiliation is not a drug or an operation, and that makes it nearly invisible to Western medicine. Our doctors are not uninformed; on the contrary, most have read these studies and grant them a grudging intellectual acceptance. But they don’t believe in them; they can’t bring themselves to base treatment decisions on a rumored phantom like attachment. They prevailing medical paradigm has no capacity to incorporate the concept that a relationship is a physiologic process, as real and as potent as any pill or surgical procedure.