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.     

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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.