Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura


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:


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.



You are the pilot

The 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.


Memo to Southwest Airlines Customer Service re. Parkies (a.k.a. People With Parkinson’s)

We Parkies can be a challenge, an opportunity, or both (duh?) for frontline customer service reps, such as airline flight attendants.

PD dealt me a new one Monday on Southwest flight 374, Houston to Portland, Ore. My body thermostat suddenly was set at what seemed 110°. Another first from PD’s sly hand.

The Missus and I had a “prime” second row seat. One problem. Front of the plane is hottest. I fled to the far back of the 90% full flight.

Flight attendant Erica pulled a Fat Tire beer for me after just three paragraphs of my “I’m being boiled alive lament.”

Erica earned a big one for Southwest with a sympathetic ear and, actually, two Fat Tires.

Not so for her crewmate Christina, who also knew I was a Parkie.

Bad Christina first gave me the fish eye, then refused me a temporary place next to her on one of those made-for-children’s-butts-jump-seats that attendants use. (“FAA regs”, you know.)

While tending to her Facebook, she looked up and said with great authority: “Next time sit in the middle of the plane.

My irritated, back-at-her: ”No shit, Christina.”

THAT I had already figured out while standing up for most of the 4-hour flight.

Good on Erica. Bad on Christina.

But both should have tried to move a few people around to find me a new seat.

For my part, I should have thought to ask for that move.

At the end of the stand-up flight was the World Parkinson Congress. One of its goals is to raise awareness about the special needs of Parkies, such as body thermostat disruptions while aboard airplanes.



Shuffling Editor and the Missus fly Monday to Portland, Ore. for the World Parkinson Congress

All we are sure about on the 5-day trip is this: off with the Florida clothes and into real September clothes, such as sweaters and outer jackets.

The previews of this meeting really hit one of my PD hotspots. Self-care by patients is expected to be a topic discussed in almost every venue at the Congress.

That’s fascinating to me because I am deeply involved in the fabulous PD SELF program. That’s the one that takes 17 recently diagnosed Parkies and their care partner through 9 months of learning about the disease — plus acquiring the self-management skills allowing them to form their own health-care team and write a care plan.

The Congress will hear from a Denver-Centered University of Colorado group of about a related effort to redefine palliative care as it relates to PD. Leaders are Neurologist Benzi Kruger and his patient partner Kirk Hall. Their model incorporates an umbrella accountability and assistance third-party that sponsors and oversees the patient’s self care.

After self care, the major topic is expected to be the immune system. The question is how it can be used to slow the disease process or even prevent the disease through such vehicles as vaccinations.

I plan to post each day on things that have caught my eye or provided me new knowledge about this mysterious disease.

Here’s an excellent instructional series coming from PDF. Mark your calendars.

Are you looking for practical tips for managing Parkinson’s disease? Join the Parkinson’s Disease Foundation (PDF) newest series of PD ExpertBriefings beginning on Tuesday, September 13.

The newest series includes six free online seminars designed to cover gaps in PD education on topics such as travel, pain and sleep. And we have you to thank for the topics! In PDF’s annual survey about Parkinson’s education, 1,000 of you responded, letting us know which topics were most important. Your feedback helped form this series.

Getting Around: Transportation and Travel with PD
Tuesday, September 13, 1:00 PM-2:00 PM ET Sara Riggare, Ph.D. Candidate, Karolinska Institutet, and Rebecca Gilbert, M.D., Ph.D., Clinical Associate Professor of Neurology, Marlene & Paolo Fresco Institute for Parkinson’s & Movement Disorders at NYU Langone
Learn More & Register

PD: Financial, Legal and Medical Planning Tips for Care Partners
In recognition of National Family Caregivers Month Tuesday, November 8, 1:00 PM-2:00 PM ET Martin M. Shenkman, C.P.A., M.B.A., J.D., Founder, Shenkman Law
Learn More & Register

Pain in PD
Tuesday, January 10, 2017, 1:00 PM-2:00 PM ET Jori E. Fleisher, M.D., M.S.C.E., Assistant Professor of Neurology and Population Health, Marlene & Paolo Fresco Institute for Parkinson’s & Movement Disorders at NYU Langone
Learn More & Register

Diagnosis PD, Now What? Managing the First Few Years with PD
Tuesday, March 7, 2017, 1:00 PM-2:00 PM ET Suketu Khandhar, M.D., Medical Director, Kaiser Permanente Northern California Movement Disorders Program, Kaiser Permanente Sacramento Medical Center
Learn More & Register

Is It Related to Parkinson’s? Runny Noses, Skin Changes and Overlooked PD Symptoms
In recognition of Parkinson’s Awareness Month
Tuesday, April 18, 2017, 1:00 PM-2:00 PM ET W. Lawrence Severt, M.D., Ph.D., Attending Neurologist, Mount Sinai Beth Israel Medical Center
Learn More & Register

Sleep and Parkinson’s
Tuesday, June 13, 2017, 1:00 PM-2:00 PM ET Aleksandar Videnovic, M.D., M.Sc., Assistant Professor of Neurology, Harvard Medical School and Massachusetts General Hospital
Learn More & Register

How can you join a PD ExpertBriefing?

  • Visit our website to register for each online seminar.
  •  View live PD ExpertBriefings using your desktop computer or mobile device or listen in by phone. Phone participants can access each live seminar by dialing (888) 272-8710 and when prompted entering code 6323567#.
  • Can’t make a live PD ExpertBriefing? No problem. View the recordings on our website. In fact, the PDF library now includes 50 online seminars that you can watch anytime of day.
  • If you’re a health professional, apply for CEUs, available via PDF’s sponsorship of the American Society on Aging. Visit our website here to learn more about that option.

Register for Future PD ExpertBriefings

View Past PD ExpertBriefings


Shuffling Editor Stunned By “Holy Shit” Recognition

Gil Thelen Named to Florida Newspaper Hall of Fame 9/14/2016

The irrepressible, bomb-lobbing, Wily Old Editor was almost –but not quite– struck dumb by this honor last night. After “Holy Shit,” I made up eight, pretty good paragraphs about newsies, Parkies and churchies—all very big parts of my life, after my family.

Each of you has given me a hand along the way. I doubt the journey, as I know it, would have been possible without you. I am most certainly blessed to have you with me, Thank you.

Wouldn’t you know it, but Wiley Old Editor—wearing one of his ever present Duke caps—bearded victorious Tampa Bay Times Publisher Paul Tash wth two pointed questions in the main and very polite SNPA/FPA conference session—scant hours before the Hall of Fame announcement.

Q1: Why wasn’t the Tribune allowed the customary courtesy of saying good bye to its community with a Final Edition producd with its own hands? A. Short good byes are easier than long ones. (Jim Batten taught us newsies to take the harder fork in the road when it was the right one.)

Q.2: Why did Tash bring armed security guards to his announcement to the Trib staff that their paper was euthanized immediately? A. “People were losing their jobs…It was only prudent to bring security, who helped Trib folks pack and leave.”

The moderator whistled me off the field when I objected to Paul’s assertion hat the Tampa community “did not care” that there was no ”Good Bye” edition. “Wrong!” I rose and said, incurring the moderator’s rebuke.

So that’s how I set the stage for the honor I did not know was coming.

Putting words, but not false sentiments, on Struby’s more decorous lips. “It was just a Full Thelen. Your usual approach these days.”


Gil Thelen

Charlotte Observer reporter Marion Ellis once said about Gil Thelen that he “sees around corners.” He meant that Gil had a strategic instinct about where readers and newspapers were headed and a practical vision for getting there fast and effectively.

Gil is credited as the first editor to bring teambuilding practices and disciplines to an American newsroom in Charlotte in the 1980s. He chaired ASNE’s Change Committee, which pinpointed the reasons newsrooms were losing touch with readers. He next chaired ASNE’s Interactive Media committee, which issued the urgent call for newsrooms to embrace the internet. All that occurred in the mid-1990s. He became known as the “change guy.”

As executive editor of The Tampa Tribune, Gil spearheaded the internationally recognized and pioneering integration of print, television and online newsrooms. Known then as convergence, it has become the norm now under various names in most newsrooms. Gil urged his colleagues to build a newsroom “where journalists can’t wait to come to work to produce a newspaper readers can’t wait to read.” The newspaper, he said, should always be the community’s “candid friend” and a “committed observer” of the community’s priority issues. That marked him as a leading and controversial leader in the public or civic journalism movement, whose practices are now commonplace and accepted as just plain, good journalism.

It’s hard to find someone with a more interesting and colorful career than Gil’s. A graduate of Duke University, he worked in AP’s Washington bureau as a consumer affairs reporter – a good one. So good in fact that the magazine Consumer Reports recruited him. It was a relatively new field, and he was a pioneer in it.

Gil worked for the Chicago Daily News and The Charlotte Observer before working in Myrtle Beach S.C. as the Vice President for news and operations with the Sun News. He then became vice president and executive editor at The State newspaper in Columbia, South Carolina. Gil next joined The Tampa Tribune where he served as executive editor from 1998 to 2003 and Publisher from 2003 to 2006.

Gil joined the USF faculty in 2007 as the Clendinen Professor of Critical Writing. Among his courses were opinion writing and public affairs reporting. He also served for a time as interim director of the School of Mass Communications at USF. Gil is an inductee to USF’s Journalism Hall of Fame at the School of Mass Communications.

Since 2006, Thelen has also served as executive director of the Florida Society of News Editors. He is credited with bringing high-quality multimedia training to Florida newsrooms.

Gil is one of Florida’s great journalists, having won numerous personal, professional recognitions including two Pulitzer Prize nominations. Also, he was part of the team at the Charlotte Observer that won two Pulitzer Prizes for Public Service. Reid Ashe has this to say about Gil: “I hired Gil as editor while I was the publisher at The Tampa Tribune. He had a vision of a great local newspaper and a deliberate program to create it. He hired outstanding people, coached his staff effectively and inspired them to excellence. “Gil was a great teacher, not only for his staff, but also for me. He taught me that a newsroom, just like any other organization, can set goals and measure progress. Gil had a checklist of about half a dozen things he wanted to accomplish in every edition, and he’d spend five minutes at the start of every planning meeting reviewing how we’d done in the previous edition. “He posted the scores, with illustrative tearsheets, for every staffer to see. As a result, everybody knew what was important and saw how they did or didn’t contribute. “Gil’s newsroom had a unity of purpose that you rarely see. I am very grateful for my years working with Gil. He made it one of the finest experiences in my newspaper career.”

Florida’s candid friend and committed observer – Gil Thelen.