Tag: Parkinson’s disease

Uncategorized

Middle Georgia Mobilizes Resources To Aid Parkinson’s Sufferers

gthelen

Our Middle Georgia Parkinson’s Community has made notable strides in the past year in treatment and education for sufferers. We’ve realized terrific help from the larger Community in making this happen. I recounted particulars in an April 10, front-page story in The Telegraph, our local, print-news provider.

Parkinson’s is the world’s fastest growing neurodegenerative condition. Incidence is projected to double by 2040, overtaking Alzheimer’s as the leading brain disorder.

Georgia is expected to be especially hard hit due to our rural predominance and heavy use of insecticides and pesticides. Our growing population of military retirees bring with them service exposure to petrochemical compounds (like Agent Orange) linked to PD.

The Parkinson’s Foundation estimates, quite conservatively, that Georgia has 20,600 cases of PD, 500 in Middle Georgia and 200-300 in counties touching Macon-Bibb.

The past year has seen Middle Georgia add a ground-breaking PD exercise and support program (PD Fit) at Middle Georgia State University. It was jump started with a $40,000 grant from the Peyton Anderson Foundation.

My colleagues in PD care know of no other U.S. program that combines the resources of a local state university, a local foundation and an energized and activist  PD  Community. PD Fit has its own Facebook page: PDFit Macon, Ga | Facebook

My Me Over PD Foundation also launched its sharable website to guide newly diagnosed Parkinson’s sufferers. The foundation’s Parkinson’s Pro-Activities free e-newsletter has topped 455 subscribers across North America. My wife and partner Struby Thelen drives this growing and valued news and information source.

Dean Jean Sumner and the Mercer University School of Medicine continued their strong support of Parkinson’s education.Dr. Sumner worked with the Anderson and MOPD foundations in 2019 to distribute 2,000 copies of the acclaimed book “Counterpunch: Duking It Out With Parkinson’s” to 375+ frontline medical offices throughout Georgia.

Mercer is now aiding the distribution of Middle Georgia PD Resource cards to area doctor’s offices. Dr. Sumner is seeking partners to bring subspecialty telemedicine services to rural, primary-care offices. 

Advertisement
Uncategorized

PD AVENGERS RIP INTO INEQUALITY OF CARE

gthelen

I spent an absorbing two hours this week “Zooming” in-and-out on the internet with a dozen international activist/leaders in the struggle against Parkinson’s disease.

Among the countries represented were Canada, Great Britain, Ireland and the USA. Participants were eager to assault inequality in access to quality Parkinson’s care worldwide.

I will know more about them and their stories as our twice-monthly meetings gain momentum. Our leader is the able Richelle Flanagan of Ireland.

Most members seem to be PD sufferers—a mixture of short and long duration. There were old guys like me and working folk in their 40s.

It is incongruous that “journalist me” is telling a sketchy story with limited details. But after all, it’s Parkinson’s, a condition that is wispy–the classic Snowflake Disease. 

Our “equity” committee is part of PD Avengers. This new, global group comprises Parkinson’s advocates who were inspired to take action after reading the remarkable new book “Ending Parkinson’s” by Drs. Bas Bloem, Michael Okun, Ray Dorsey and Todd Sherer.

The book’s Prescription for Action is this: “We must form a PACT to end Parkinson’s. This PACT will Prevent the disease, Advocate for policies and resources, Care for all affected and Treat the condition with new and more effective therapies.” 

I wrote this in an April newspaper review of the book: It is a compelling read and a “stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.”

The charge to our equity committee is: 

“We need all people of the world with Parkinson’s to have equitable access to proper medications, treatments, information and support in order to meaningfully add their voices to our 50 million PD Avengers.”’

I will report regularly on the committee’s work in coming months.

For more on PD Avengers, see https://www.pdavengers.com.

Uncategorized

Why Not Become A Neurologist?

gthelen

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

gthelen

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

gthelen

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.

 

 

.

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

WORKAROUNDS: Counterpunching 14 PD Indignities

gthelen

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!

gthelen

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, Uncategorized

NOH DRAMA

gthelen

noh-drama

This post is not about Noh, the traditional form of Japanese theater, but about nOH, a pesky PD parasite that has paid me an unwelcome visit.

Neurological Orthostatic Hypotension disrupts the body’s thermostat, alters the plumbing, unsteadies the legs and saps energy.

It’s like that pilot fish riding along with the shark. A very unwelcome hitchhiker.

It has me so warm I am shirtless on the lanai writing this post. It has virtually killed my Rock Steady boxing sessions. It plays havoc with carbidopa-levodopa, producing paradoxical sleepiness. My mind and spirits, fortunately, are intact.

But it’s taxing my patience.

Backing up a few bars, this critter disrupts the autonomic nervous system. Goodbye normal kidney function, temperature regulation and blood circulation. Hello edema in the ankles and numerous visits to the loo for pees.

My very astute internist didn’t know what I was talking about when I said, “I’ve got nOH.” My equally astute MDS put me on Rx hold–instead of lobbing something nasty at this creature, STAT. Try compression stocking and diet alterations, was the message. We’ll see how those work.

The reputable PD literature says nOH is common in PD and Multiple System Atrophy (please, not that.) It notes that nOH often signals entry into mid-stage PD. I don’t like that one bit, either.

Check out the Parkinson Foundation’s take on nOH: http://www.pdf.org/pdf/fs_orthostatic_hypotension_15.pdf

Recall my earlier post (click here) about burning up on then airplane ride from Houston to Portland for the world Parkinson Congress. That was the tip off to what was brewing inside me.

I will keep writing as I pin this guy down and figure a course of action. Yep. Self-Efficacy to the front. My doctors and I are certainly not interested in another medication, but it may be the wisest way we have to go.

Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura

gthelen

whos-afraid-of-palliative-care

Who’s afraid of palliative care? My editor, of course. 

Mention palliative care to a Parkie, and most will recoil in real or imagined terror. The first mental association is to hospice and/or end-of-life care.

Here’s what my editor Laura (a tiny woman who in a flaky voice has vowed to kick Parkinson in the face) said about it:

“The word palliative makes me shudder…

“It sort of spells defeat. To me it says: ‘We have given up hope of curing you, so we just want to make you comfortable before your impending demise.’

“In fewer words: ‘Make yourself comfy and die.’

And she adds: “Yet, if I had a nasty, painful, end in sight, I guess I’d want to be palliated to the max”.

The fact is palliative care is undergoing a dramatic and sweeping overhaul. Rather than end-of-life, the focus is now on creating –and following through on– health care plans. Those start at diagnosis and proceed through a number of steps that include patient self-management, mid-stage plan alterations, family support and, finally, death with dignity.

Kirk Hall’s astute reframing of palliative care is well worth reading. This link takes you to his presentation to the World Parkinson Congress.  

Now more about Laura Crawford, my new blog partner, whose commitment to the PD SELF program is astonishing. Laura has all the graphic skills I do not. She also has a fertile and inventive mind about the presentation of ideas. Her illustrations have graced several of recent Shuffling Editor posts.  

I asked Laura to write about herself and her husband, Dan Crawford, a retired telco senior exec. The Crawfords live in New Port Richey, FL.

Now for Laura on Laura:

editor-in-the-sky

Gil Thelen has called me his editor. Those who know him realize that he is pulling my leg. 

But it opens up an opportunity to ask myself, “who am I?”

Fact and public confession is that I have always been a pushover.

Like in a line by T.S. Eliot, I have asked myself at every step: “Do I dare eat a peach? Do I dare disturb the Universe?”

To the concern of my parents and my teachers, since I learned to read my face was always behind a book (I was not a popular kid).

To keep safe behind the pages, I studied literature.

“I’m now licensed to read,” I marveled when I graduated, and went on to spend two decades in PR and media relations. In 2009 I started a communications agency in Mexico, from where I hail (my business partner was a designer, I wrote content). 

Then puff! Out of life’s box of surprises, I was diagnosed with Parkinson’s. 

After exclaiming: “Aha! That’s why I fell asleep in my client’s office!,” I thought I had arrived at my life journey’s last stop. 

But it has opened the best part so far. Parkinson’s forced me out of my old constrictions and into a physically and mentally challenging territory that I am just exploring. It’s sights can be terrifying and yet liberating. 

In early 2014 I left the office in my business partner’s hands, and my very wonderful husband, Dan, brought me to Florida to be treated at the UF Center for Movement Disorders and Neurorestoration.

There, Dr. Michael Okun warned me as he prescribed medication (and I’m very loosely paraphrasing this awesome neurologist):

“Watch out, for you might go gambling, stomp out in a sexual rampage or destroy your finances on a shopping spree.”

But I never thought my obsession would zero in on markers and sketch pads. To my surprise, my brain has turned to graphics. Instead of books I now buy art supplies; words were my life, but now I try to explain everything in form and color. 

So here I am, about to zap Gil with my blazing color pencils if he forgets a comma, ‘cause I’m learning to be assertive (and he’ll zap me back, because he is assertivier).

Anyway, I have embraced PD SELF because the program is great not only against Parkinson’s, but –more importantly— I trust it will help me get rid of that fear of living that shrivels our capacity to enjoy whatever life we have ahead.

PD scares me. But I want to kick him in the face and say, at the end, that my trek was good and that, even if I do it in a shaky/twirly gait, I walked it as myself in full.

A final word about the Congress: gathered were several thousand Parkies using canes, walkers, wheel chairs, walking poles, companion dogs, leg braces, to name but a few PD aids.

What those brave people have in common is one thing.

Hope.

Uncategorized

You are the pilot

gthelen


you-are-the-pilotThe pre-Congress handicapping was right about patient-driven PD care plans. They are indeed a major focus of public and private conversations here in Portland at the 4th World Parkinson Congress.

Neurologists who met Tuesday are reported to have spoken approvingly about placing the patient at the center of their PD care plan, as an actor rather than as someone acted upon.

The Denver centered group that is testing a different model of palliative care–one that focuses on process driven steps from diagnosis to final outcome–embraced the Parkinson Foundation  PD SELF program as an initial step in their program.

Most of you reading this blog are quite familiar with PD SELF. The nine-month program is centered on deep information about PD and mental tools that put patients comfortably at the center of the care plan they develop. In a word, they are the pilots of their own aircraft/plan.

The pilot model replaces the neurologist at the center of the team. The patient pilot is the center. The informed patient creates their plan with components such as exercise, diet, socialization and specialty areas, such as speech, occupational therapy and clinical social work.

As I was writing this blog, Dr. Benzi Kluger came by the media room. This modest, gutsy and brilliant Denver MDS is directing the palliative care initiatives in Denver, San Francisco and Alberta, Canada. He said he agreed that a number of factors were coalescing to drive patient-piloted care to the forefront.

An excellent program Tuesday gathered health-care professionals to speak about their team experiences. An important point was not to expect team harmony. Conflict is inevitable and the patient captain must be skillful in managing and leading through it. 

A second nugget was the patient captain needs a strong right arm on the team to drive the necessary intra-team connections. A very insightful social worker said she used to describe her role as the team’s “Elmer’s” glue; now it’s the “Gorilla” glue, invoking the image of an ever more complex health-care environment.