Uncategorized

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.
Uncategorized

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.

Uncategorized

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!”

 

 

 

 

Uncategorized

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.
Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise, Support Groups, Uncategorized

Essential PD Communities

I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.

Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.

Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.

To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/

Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.

Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.

Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.

I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.

 

 

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Uncategorized

Catch the Davis Phinney Victory Summit March 3

The Davis Phinney Victory Summit returns to Southwest Florida March 3, 2017, in Punta Gorda. I did not know about last year’s well-received Summit event in Sarasota. I wish I had. Parkies who attended called it excellent.

The all-day 2017 Summit is a bit of a trek, probably 90 minutes from downtown Tampa. My wife and I plan to attend. Registration information for this free event can be found at http://www.davisphinneyfoundation.org/events/victory-summit-southwest-florida/

We can take 5 normal-sized, additional passengers  in my SUV, the now famous  Soul Red Mazda CX-9.

You must, dear reader, remember the December post about Soul Red running afoul of road construction, plunging down two feet into a “pit.”

Next day, enroute to my dealer, she was broadsided by a deer.

A quite big deer, judging by the damage to the left rear door.

Red was laid up for 30 days and cost 7 grand to repair. She is good as new.

Parkinson's Disease

Bringing The Wily Old Editor To Heel: Taming Hotspur

I retired from (and was retired from) most aspects of organizational life Saturday.  That took adamant superiors 53 years to accomplish.

I was replaced (fired) as co-facilitator of a dynamite, leadership development program for Parkies named PD SELF. Simultaneously, I resigned my other duties with the Parkinson’s Foundation. The parting was far more amiable than these ruptures tend to be.

All cards on the table face up…..……     

I can be a Hotspur to manage, especially when it comes to things really, really dear to me.

Just ask my former newspaper bosses: Rich Oppel, Mark Ethridge, Mike Pate, Frank McComas, Bill Baker, Clark Hoyt, etc., etc.

I will continue my wonderful association with fine Florida newspaper editors, tend my blog www.shufflingeditor.com, work for my church and contemplate a book. Its tentative title is “Taming Hotspur Subordinates.”

 

Parkinson's Disease, Parkinson's exercise, PDF, Support Groups, Uncategorized

WORKAROUNDS: Counterpunching 14 PD Indignities

pd-walkaround

I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.

I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.

Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.

Those are my issues, too.

I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.

  1. Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
  1. Clumsiness when eating (dropsies): substitute spoons for forks.
  1. Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
  1. Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
  1. Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
  1. Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
  1. Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
  1. Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
  1. Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
  1. Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
  1. Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
  1. Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
  1. Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
  1. What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
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.

Parkinson's Disease, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? 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 the 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.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.


MY PARKINSON’S CRASH COURSE

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we cannot only live well with Parkinson’s, one day we can end it.

 

 

Must Read, Uncategorized

Humanizing Jesus

manger
Fellow Parkies and other Shuffling Editor readers:

I found this  gem of an essay particularly moving on Christmas Day. It underlines the deepening spirituality  that the PD journey often brings. It certainly has done that for me.  I hope you enjoy it as much as I did.

A very Merry Christmas,

Gil Thelen, The Shuffling Editor 

http://www.nytimes.com/2016/12/23/opinion/humanizing-jesus.html?emc=edit_th_20161224&nl=todaysheadlines&nlid=52114048&_r=0

By Peter Wehner

Early in my Christian pilgrimage, as a young man struggling to understand the implications of a story I had only a surface knowledge of, I stumbled onto a theological insight. For followers of Jesus, salvation was based not on his life so much as his death. Jesus could have been incarnated as a man and been crucified within days. That’s all that was needed for his death to serve as an atonement, but that’s not what happened. God clearly wanted to instruct us about how we should live in this life, too. He became not just the author of the human drama but an actor in it.

According to the Christian Scriptures, Jesus had a life story — born in a manger in Bethlehem, later moving to Nazareth, and dying in his 30s, just outside Jerusalem. The fact that we’re so familiar with the story has inured us to just how jarring and unexpected it was. God came to earth “not in a raging whirlwind nor in a devouring fire,” in the words of Philip Yancey, author of “The Jesus I Never Knew,” but in humility, without power or wealth, in a world marked by strife and terror.

Jesus spent his infancy in Egypt as a refugee, Mr. Yancey points out, and the circumstances of his birth raised the specter of scandal. His life, then, was a profoundly human one, involving work and rest, friendships and betrayals, delight and sorrow. This has deep implications for how Christians should understand and approach life.

For one thing, the Incarnation dignifies the everyday. There has been a temptation throughout Christian history to denigrate the things of this world, from material comforts to the human body, viewing them as lowly and tainted. But this concept is at odds with what Jesus’ life taught, which is that while worldly things can be corrupted, they can also be elevated and sanctified.

Consider that Jesus was incarnated in a human body. He was a child in need of care and protection. He was a carpenter, a craftsman who worked creatively with his hands. His first miracle was at the wedding in Cana, where he transformed water into wine. There was joy and purpose to be found in the commonplace. The Incarnation also bestowed worth on people considered contemptible, unessential and valueless — “the least of these,” as Jesus put it.

Indeed, one of the indictments of him by the religious authorities of his day was that he was a “friend of sinners.” Jesus’ love was “undiscriminating and inclusive,” according to the writer Garry Wills, “not gradated and exclusive.” He spent most of his time with those who were forsaken, poor, powerless and considered unclean. In a patriarchal society, Jesus gave women an honored place. He not only associated with them, but they were among his disciples, the object of his public praise, the first people he spoke to after his resurrection.

The most intense confrontations Jesus had weren’t with those with loose morals but with religious leaders, the upholders of the “holiness code” whom he called out for their arrogance, hypocrisy and lack of mercy. In the Temple courts, Jesus told the chief priests, “I tell you the truth, the tax collectors and the prostitutes are entering the kingdom of God ahead of you.” In the words of Professor Wills, “He walks through social barriers and taboos as if they were cobwebs.”

The Incarnation also underscores the importance of relationships, and particularly friendships. The Rev. James Forsyth, the winsome and gifted pastor of McLean Presbyterian Church in Virginia, which my family attends, says friendship is not a luxury; it is at the very essence of who we are. The three persons of the Christian Godhead — Father, Son and Holy Spirit — speak to the centrality of community. When we are in a friendship, according to Mr. Forsyth, we are “participating in something divine.” That is, fellowship and friendship were present in the Trinity and are therefore of immense worth to us. I’ve experienced that in my own life, when friends served as God’s proxies, dispensing grace I could not receive in solitude.

In some rather remarkable verses in the New Testament, Jesus told his disciples: “I no longer call you servants, because a servant does not know his master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.” God’s emissary on earth had a core group of intimate friends — Peter, James, John and perhaps his most faithful friend, Mary of Magdala. These are people Jesus confided in, relied on, celebrated with and mourned with. He not only praised friendship; he modeled it. It’s difficult for us now to appreciate the shock it was considered then — that the “image of the invisible God,” in the words of St. Paul, not only didn’t compromise his divinity by taking on human flesh, he actually found succor in human relationships.

The Incarnation is also evidence that God is not an impersonal, indifferent deity. Instead of maintaining a divine distance from life’s experiences, including its grief and hardship, Jesus shared in them. This can be seen in the moving events surrounding the death of Lazarus, the brother of Martha and Mary of Bethany. Here is the account from the Gospel of John:

When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.” When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. “Where have you laid him?” he asked. “Come and see, Lord,” they replied. Jesus wept. Then the Jews said, “See how he loved him!”

In the account in John, Jesus raises Lazarus from the dead. The point here, though, is that Jesus not only had sympathy with those who were suffering but experienced grief to the point of tears. Contrary to the “health and wealth” gospel, which argues that God will deliver prosperity to those who have faith in him, Christianity does not promise an end to suffering even among the most faithful, at least not yet. But it does promise that God can bestow mercy amid our struggles, that in time he can repair the broken areas of our lives.

Jesus was not a systematic theologian; that work was left largely to St. Paul and others. While he certainly argued for the importance of righteousness, Jesus was far less concerned about rules than he was about relationships and reconciliation — with one another and with God. For some of us, Christmas is a reminder that while moral rules can be issued on stone tablets, grace and redemption are finally and fully found in a story of love, when the divine became human. I didn’t enter Jesus’ world; he entered mine.

Peter Wehner, a senior fellow at the Ethics and Public Policy Center, served in the last three Republican administrations and is a contributing opinion writer.

 

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The Night GPS-Navi Smacked Me Down

soul-in-a-pit

“Wake up, Babe. The wrecker just lifted your SUV out of the pit,” said Struby, to her husband, customarily The Wily Old Editor. It was a little after midnight.

So ended the GPS-Navigation system’s assault on The-now-not-so-Wily Old Editor and his ride, a beautiful red Mazda CX-9, “Soul Red.”

I had reached the outskirts of Ocala about 5:30 PM, driving home from Jacksonville on Central Florida back roads. I had not yet deployed the Navigation system (Navi for short). I turned it on for guidance to I-75.

Trouble ahead.

Navi sent me in circles, twice leading me through The Villages retirement community. For over an hour its voice demanded travel on US-301, not nearby I-75.

I had had enough. I veered away from the 301 “force field” and followed the blessed “To I-75” sign, turning west on Sumter County 470.

Navi appeared to give ground. It allowed my deviation from its preferred route, signaling I-75 was scant miles away.

Still More Trouble Ahead

Next was the “Road Closed” sign and haphazardly placed orange barrels. The barrels did NOT close my lane, just directed me into an oncoming traffic lane.

I slowed to 10 MPH. Next a dramatic drop on the right and a loud, grinding stop. Soul Red and I were stuck. The instrument panel indicated we were operational but listing right, 37 degrees to horizontal.

Soul Red’s left wheels remained on the road pavement. Her right wheels were off the pavement, dangling 2 feet over the roadbed of a lane under construction. Time 7:00.

Lovely Soul Red was beached like a steel whale.

The skilled tow truck operator arrived about 10:30, some 2 hours after my wife dashed up I-75 in case my car was no longer drivable. He surgically extricated Soul Red 90 minutes later, using makeshift wedges under the fallen right wheels.

Explanatory Notes

*A BMW toppled into the pit, just moments after I had.

* The night manager at the nearby Texaco station said at least one car a night had taken the plunge.

*A Sumter County Deputy Sheriff agreed with the tow man that “this was the worst marked detour” ever. DOT “had a lot to answer for,” the two opined.

Navi’s Aversion to Interstate Highways
An instrument setting that permits “freeway” (as in California?) travel was not “on.”

Was the incident Navi’s revenge on The Wily Old Editor for refusing to go in more circles on US 301? 

Postscript

Soul Red’s underside and dignity were scratched. She was otherwise sound and quite fit to drive.

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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.

 

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.