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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

Parkinson's Disease

Bow Ties Pummel Parkinson’s

Cometh a long story about a short tie with large meaning.

I had favored bow ties for 50 years, since graduate school at Cornell Med in New York City.

My collection at peak numbered 37—Foulards, Quads, Links, Felts Pine, Paisley, Lorraine Stripes, Harrisburg Medallions, Snead Neats, Quicksilver Stripes, Becker Stripes, Brooks Stripes, Halstead Spots.

Roll those wonderful names off your tongue.

My bow ties had stories to tell.

I often wondered whether the late Steward Bryan hired me for Tampa because we both favored short ties. He tied his floppy, telegraphing casual elegance, Virginia-aristocrat branch.

(My favorite Bryan quip: “If I had known how rich I was, I would have been drinking better Bourbon all these years.”)

Bow tying ended abruptly for me due to Parkinson’s. My numb fingers could no longer tie a tie. My now-unused collection stared back at me, kind of angry.

Enter Randy and Veronica.

Randy is the founder of R. Hanauer Bow Ties in Fort Mill, SC, a Charlotte exurb. He made my bow ties for years.

Veronica is the skilled seamstress at the Jos. A. Bank men’s clothing store in The Shops at Wiregrass, Wesley Chapel, FL, a Tampa exurb.

A pop-up ad appeared on my computer screen in August. It was for a pre-tied bow tie, not an ugly clip-on.

FLASH!

I called Randy. “Do you by chance sell pre-ties?”

“Yes,” he answered.

“Can I buy several and would you convert my Hanauer collection to pre-ties?”

Certainly, he said. “Box them up and send them.”

Charge

“None.”

Wow!

What about the Brooks Brothers and Ben Silver bow ties I have? Could those be converted?

I showed Veronica the Hanauer pre-ties.

“Can you do the same for my 11 Brooks and Silver ties?”

“I’ll try,” she answered.

Yesterday I picked the 11 up.

Beautiful work, Veronica. I now have 20 very usable bow ties.

Add an “ankle-bitter” to my list of small ways to strike back at Parkinson’s, the disease that diminishes a person’s powers and saps control of their life.

Gotcha this time, Bruiser!

 

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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.

Must Read, Parkinson's Disease, Parkinson's exercise, Research

PD Dyskinesias and Role of Inflammation in PD

Two interesting pieces just came across my electronic desk. One involves dyskinesia treatment. The other concerns growing evidence of the role of inflammation in PD.

They are worth attention.

https://www.acsh.org/news/2017/08/28/advance-treatment-parkinsons-disease-11749

https://psychcentral.com/news/2017/08/28/curbing-inflammation-may-reduce-risk-of-alzheimers-parkinsons/125250.html

Davis Phinney Foundation, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Parkinson's exercise, Parkinson's Foundation, PDF

Hall of Famer Okun Opines on PD Rx

I wondered this as I read the JAMA Network piece on best practices in PD care: “Who is this fluent writer plumping interdisciplinary PD care?” NEW recruit to the cause, I murmured to myself.

Nope.

Got to the author’s name at the end. No other than Shuffling Editor Hall of Famer, UF’s  Michael Okun.

More good work from the Chief.
Read and learn.
Davis Phinney Foundation, Palliative Care, Parkinson's Disease

PREPARE! Val Trumpets to Parkie Families

Shuffling Editor Note: This post is the work of Valerie Herrero, steadfast widow of Gerard Herrero. Gerard died May 26 from complications of his PD, diagnosed in 2005. Gerard never, ever gave in to his PD, which he and Valerie fully “owned.” The Herrero’s were headline members of the North Tampa PD Support Group. Valerie continues to serve as the email megaphone for the group and many other PD service organizations and individuals in the Tampa Bay area. Valerie is unstoppable when she seizes an issue and makes it hers. Here she recounts PD the journey she and Gerard had and offers lessons learned.

By Valerie Herrero

On Friday, May 26, 2017, my husband, Gerard Herrero, left the world, as we know it. Gerard is free from the Parkinson’s, cardiovascular disease and related autoimmune issues he and I wrestled with for 13 years.

PD started, as a nuisance twitching of one finger but gradually became challenging, trying and very ugly. There were shaking, freezing, balance issues; difficulty getting up from chairs; difficultly dressing, especially with buttons and zippers, socks and tennis shoes.

It became challenging to eat at home or in a restaurant. Holding tight onto objects such as cups and glasses, sandwiches, forks, etc. became an adventure.

As a care partner, you learn to modify and adapt. For example, this last year we moved his tax preparation, accounting services and financial advisory business to a home office after his PD worsened.

Weekly exercise became the top of our agenda with YMCA PD Spinning, Rock Steady Boxing, Tai Chi, PT, OT and walking. We mastered walking sticks and walkers to push forward. We were always looking for something new to try.

PD drugs started to buck Gerard. The last 2 years he had more off times than on times. Adjusting Carbidopa-levodopa dosages was unsuccessful. Some days he would take 12 – 14 pills in a 24-hour span.

Then in May 2014, his immune system went wacky. Gerard’s platelet count dove to dangerous levels. In December 2016, Gerard was diagnosed with Bullous pemphigoid Disease, an autoimmune skin disorder.

Words I leave for Parkies and their care community: Get PREPARED! PD is an ugly, malicious, humbling disease that causes other health issues and life trials. Whether you accept it or not, realize it or not, death is inevitable and one day it will knock.

Everyone needs to start assembling their team of doctors, creating a palliative action plan and finalizing an end of life care plan. Get all your documents in order: (medical, estate, will, wishes, organ donations, etc.).  You never know when it’s going to be your last breath.

No matter what stage of PD you are in……Please….. Please make every day the best gift you have. Create memories because time is precious!

 

Please take the time to live, love and laugh as if today is your last.    Don’t assume anything. Someone else higher up is in charge and has the master plan.