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PD Ups and Downs

 

In reporting “Counter Punch” I uncovered nuggets of invaluable information about managing my PD. The book, by the way, is in my body shop for rewrite. Basic information is the same. It demands more personalized storytelling.

In Fall 2016 my PD dealt me a wicked blow. My autonomic (involuntary) nervous system collapsed. Drinking water constantly (polydipsia), peeing incessantly (polyuria), hot flashes, spacial disorientation, equilibrium and balance kaput, further loss of touch and feel in hands. A nightmare.

It took nine months of hard work to recover. Personal trainer Jordan Brannon and Physical Therapist (Mad) Matt Lazinski pulled me through. By September 2017 I was better than new.

In the midst of my ANS horrors, I sold my precious Taylor Made golf clubs. I had wrongly assumed I would never recover my lost equilibrium and balance.

Wrong call.

I can again swing a club without falling over. Fortunately I have an earlier set I can use for fiddling around on a three-hole course at our new home in Macon GA.

My reading had not prepared me for this sharp, upward turn of events. After all, what about that chart of symptom severity that strongly suggested the disease course would be lockstep down?

Dr. Jim Davison, my Tampa medical Sherpa And drinking buddy set me straight over a beer-or-three.

“A chronic disease of almost any kind never moves in a straight line,” he counseled. “There are inevitable peaks and valleys. You crashed in 2016. You more than fully recovered in 2017. Expect those variations to continue.”

Aargh! Flash of light! Mystery explained!

Same thing happened to my Parkie Buddy Jerry Iwerks. Through a diligent exercise program he moved from so-called Stage 3 Symptoms to Stage 1.

Remember these wise words:

“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.”

 

 

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The Tampa Humidor Trumps My Parkinson’s

It’s a 5,000 square-foot storefront hard by railroad tracks in a challenged part of North Tampa. Busch Gardens is two miles east along Busch Boulevard. I-275 is a short mile west.

 

A Cigar Store Indian silently greets you at the front door. You walk in to the rich aroma of cigars.

The staff is welcoming and endlessly accommodating. Coffee perhaps? A cigar recommendation within your budget?  Guidance on accessories from humidors, travel cases to butane lighters and cigar cutters?

Done.

The semi-circular bar faces two 45-inch TVs, always on to sports or  news. An oddly misspelled cigar maker’s yellow electric sign beckons. “Oliva Serie (cq) V bar.”

The bar comfortably seats nine. The Humidor’s gracious baristas are busy behind the counter, offering soft drinks, coffee, water, beer and wine—but no liquor.

The feel is comfortable and welcoming. Quiet readers occupy the 18 stuffed leather chairs and sofa.

The rectangular, 4×10 foot work table seats 8 laptop computer users.  They work mostly quietly, sometimes not. (That’s chatty me, sometimes.)

One of the six roundtables, with high chairs, is often the “Cribbage Place.” Cribbage is the Humidor’s signature card game, sometimes raucous, always spirited.

The Humidor opens at 9:30 AM for the coffee regulars (that’s you Golf and Cigar Connoisseur Robert) having their initial cigar of the day.

Activity grows around noon.  Lunch breakers enjoy a “stick” after their sandwich, (Pre-made Cubans are always available from the back fridge.)

Cribbage players are a backbone of the afternoon crowd. The evening gang is quite different, many of them young professionals.

The Humidor is a male hangout in tone and culture during the day. The occasional female visitor can expect full attention, respectfully. Pepsi Ron, often there, with wife Lorraine says, couples are comfortable because regulars sanitize profane language to fit the mixed-gender setting.

The never-ending parade of buyers, some staying, some not, run the gamut from blue collar to white, and everything in between. Think firefighters, chefs, nurses, day traders, painting-and-roofing contractors, moving-company honchos. The lawyers and doctors buy, but rarely stay. There is even a retired protestant bishop, who’s a Parkie like me.

Cigar smoking is backdrop to the Humidor’s main but mostly unspoken purpose. It’s a “Cheers Bar” place.

Regulars who still have hair, let it down. The conversation mix at the bar is mostly personal: estrangements, divorces, children, retirement, news of the weird, Bucs doings, the Rays playoff chances.

Politics talk is muted, especially since the divisive election of 2016. The very racially diverse regulars steer away from conversational flash points. Respect is a Humidor shared value.

Humidor camaraderie is medicine for the soul, and sometimes even more.

“I can no longer afford my anti-depressant medication,” says Mikey, the Humidor’s unofficial social chairman. “I treat my depression by being here.”

A Mikey specialty is baseball outings—beer, food, cigars at George Steinbrenner Field.

Conversation is easy. “You never meet a stranger here,” says deputy sheriff Robert.

“We’re family,” says Grandpa Ron.

The Humidor family has tended to me since my Parkinson’s diagnosis in 2014. Dropped pills. Man bag left atop my SUV. Misplaced lighters. They police my forgetfulness and inattention.

That’s you Mike and Mikey, Brian, Shel, Dennis, Harry, Pepsi Ron, Chuck, Coach, Dave and Dave, Todd, Steve, “Bish,” Reggie, Curtis and so many more.

I wrote this to the guys on the occasion of my departure from Tampa to Macon in November.

“You have been there for me, ups and downs, lost gear, withdrawn, exuberant.

“Please select a special cigar as a small measure of my gratitudefor your compassion and fellowship over years together at the Humidor Clubhouse for boys (mostly) of all ages.

“Present this card at the cash register as payment in full.

“With deepest regard,

“Gil”

I love Tampa Humidor and all it represents

For me, the Humidor is a place to write, read, quip. It’s a second home filled with delightful friends.

As my PD has ebbed and flowed, my mates have recovered things I dropped (most famously my wedding ring into a stuffed chair), helped me recover rolling pills and see it to that I leave nothing behind.

As we prepare to leave for our new home in Macon, GA, I know there will never be another Tampa Humidor in my future.

I love it for what it stands for and the many friends who make it so very special.

Adios, guys

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The Compassionate Barista

My indispensable Starbucks travel mug disappeared in transit between the Marriot Wardman Hotel in Woodley Park Washington and the Southwest gate at Reagan National.

Probably left in the rear hatch of the taxi when the driver took out my backpack with mug attached. Improbably when the TSA gang scrutinized the backpack for what seemed hours.

Anyway, the great looking white mug with handle made for this Parkie –who has little feel left in his hands– had seemingly vaporized.

Compared to the urgency of joining my wife in Tampa as Hurricane Irma approached Florida, the missing mug was a footnote to a very anxious travel day. (Last plane to Tampa that Friday.)

After Irma passed with no damage to our home, I began he Web search for a replacement mug. No luck.

Plenty of handsome Starbucks mugs, but none exactly like mine with a handle.

Plan B was to visit local Starbucks stores in Tampa seeking the mug. My wife and I split the list.

My first stop was the Starbucks on Bruce B Downs Boulevard across from the University of South Florida campus in northeast Tampa.

Bingo!

There it was on the shelf with other mugs. In black, not white.

No matter. I was soon to be back in the mug business.

I asked the barista in charge whether she might have it in white. No luck.

I told her my woeful story.

I went to my CX-9 to get my wallet. I handed my MasterCard to the barista for payment on the black mug.

No, she said. “It’s on us. You lost yours.”

Presumably, mine was an Irma story for her.

She disappeared into the back of the store before I could properly thank her (Her name I do not know.)

I left a Jackson in the tip jar and walked out with a Grande Pike’s Place.

Never had Starbucks coffee tasted better. Nor my loyalty to Starbucks been stronger.

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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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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.