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“Emotional Incontinence” and My PD

My “Parkie Pal”  Laura Crawford unloads great phrases that snap me to attention. I often borrow them with pleasure and her permission.

Take the one on PD being a “pesky tenant.” Writes Laura: “My uncle Rodrigo (who  has PD)  was the first family member I called the day I was diagnosed. I was very scared because I had just goggled the chart and the word dementia at the 5th level had terrified me. But my uncle advised me to consider PD as a pesky tenant living in my body. A horrible nuisance, yes. But no longer that monster I had imagined.”

Another Lauraism: Emotional Incontinence. Technically, EI appears to mean uncontrollable crying in PD or a Parkinson-like disease. I experience EI differently.

Case in point was last weekend’s 60th reunion of my high school class at the Milwaukee Day School (now part of the University School of Milwaukee.)

It was a pleasantly emotional two days of beer and fellowship with my 12 classmates (out of 28 graduates.) I have written previously about their frontal assault on Ivy League colleges and their eight earned doctorates and six law degrees.

The final dinner was my EI downfall. I ached so much I could not stay seated. I had to roam and stretch. I was viscerally offended by one spouse’s unending inanities. I could focus only on the pleasing prospect of sleep.

I had overdrawn my emotional bank account with 48 intense hours of interpersonal engagement and no breaks for introverted solitude and battery charging.  It didn’t help that I had organized the event and was intent on it succeeding.

I explained my “Parkie Moment” to the table and retreated.  We arrived  at our host’s house and blessed sleep soon engulfed me.  I felt refreshed the next morning. My first identifiable experience of “emotional incontinence” passed with minimal damage.

Having given you the prelude to the reunion, a closing note is due. What follows is a modified version of the electronic letter I sent to my classmates in attendance, headlined nostalgia.

NOSTALGIA

/nɒˈstaldʒə /

▸ noun [mass noun] a sentimental longing or wistful affection for a period in the past:

As in , I was overcome with acute nostalgia for my days at Milwaukee Country Day School.

Oxford Dictionary of English

The first symptom hit Friday (June 24, 78th birthday). My submerged Packers fan erupted. That 1947 green-and-yellow cap leaped from the Lids online catalogue. I clicked and bought.

It crescendoed Sunday. I could not leave without two University of Wisconsin T-shirts from the airport gift shop.

Dr. Robert Miles Schmidt, my surgeon-chauffeur, talked about people we knew from childhood as we rode up and down lovely Lake Drive. He was encyclopedic in telling life stories. What had happened to Pepper Read? How about Bob Littel, the crushing halfback/linebacker? Turns out Bob wrote children’s books before his passing.

I thought about the six cities where I lived over my journalism career. Bob’s experience in one was deep and resonant. Mine were on-the-fly immersions. For the moment at least, Bob’s deep dive trumped my repeated, intense journeys to adjust and understand my new community.

Ours, for the most part, appeared to be a crew that lives modestly. Consider two of our “rides.” Bob Schmidt, the surgeon, had sported a ‪2003 Buick Park Avenue (127,000 miles). It was retired recently, with honors, after chronic rustitis. Replacing it is a 2015 Ford Focus, purchased used from Enterprise. Retired municipal judge Carl Backus’ ride is a 14-year-old Ford Taurus.

An encounter with retired lawyer John Hazelwood showed the limitations that distance had imposed on our knowledge of one another. Before the weekend, I had shared a piece by a Washington writer I know and respect. John fired back, telling me never again to dump such trash on his electronic doorstep. He appeared to believe I was a typical media liberal.

‪Saturday afternoon‪, the beach talk touched on the infamous Duke lacrosse case. I shared the disdain that my Duke classmates and I had for our president.  He had botched the matter and flung the team under the proverbial bus.

I took John’s surprised expression as solidarity on political correctness in the academy. (We in fact had both read and admired Stuart Taylor’s searing indictment of press-administration-legal failings. “Until Proven Innocent: Political Correctness and the Shameful Injustices of the Duke Lacrosse Rape Case.”)

God speed, gentleman, until our next encounter.

30

 

 

 

 

 

 

 

 

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What’s This Self-Efficacy Stuff REALLY About?

“Who were those people? Talking some garbage about self immolation.”

“No, dude, self-efficacy not self-immolation, as in the ‘confidence a person has in his or her ability to influence an outcome or be successful in achieving a result. Self-efficacy beliefs determine how people think, feel and motivate themselves.’” (Fictionalized Hotel staff Hyatt Regency Tech Center, Denver, May 14, 2016. The wonderful cartoon accompaniment below is by my Parkie Pal Laura Crawford.)

The-PD-SELF-commentsHow about that retired Philadelphia-area organizational development consultant in attendance. After his Parkinson’s diagnosis, he mysteriously (to himself) found the capacity to become an accomplished folk painter and soon-to-published poet.

And the buttoned-up, retired Richmond, VA dentist who raises buckets of money for Parkinson’s research and the Parkinson’s Disease Foundation (PDF).

Or the light-up-the-room, former pediatric office manager from Denver.

Not to mention the research coordinator named, would you believe it, Chi Chi.

And the wisecracking, not so retired former newspaper editor and college professor (me).

That’s a taste of the 20 Parkies and their study partners who met to train-as-trainers for a PDF program named PD SELF. The program’s author is an extraordinary Parkie, Diane Cook, a Denver training expert.

We left the 2½ day training stoked to recruit in our eight communities from 10 to 18 newly diagnosed Parkies and their care partners, locate the right meeting spot, and get the word out to the community about this dynamite opportunity.

In the process, we had become a cadre of ground troops convinced of this truth about PD: “I didn’t choose to have PD, but I can choose how I respond to it. It does not define me. I am much more than a person with PD.” Those words are a paraphrase of the Michael J. Fox message, courtesy of the Philadelphia Parkie, poet and folk artist John Creveling.

The training showed clearly that all of us had already demonstrated self-efficacy practices in our PD and related work. We had some differences of opinion about how to conceptualize and describe the training we would lead, but we were rowing together on the cornerstone ideas.

 

The modules of the program made perfect sense to us. They include: your healthcare team, medications and treatments, physical therapy and exercise, non-motor symptoms, integrative medicine, neuroplasticity, relationships/intimacy/care partners, plus how to get involved in research and clinical trials.

My major takeaway from the training was how commonsensical the program is and how fulfilling it will be to share this meticulous, beautifully crafted effort with newby Parkies.

The training teams are from eight communities: Denver, Boulder, Phoenix, Houston, Detroit, Philadelphia, Richmond, and, of course, Tampa, my home.

When I applied for the program, I wrote this: “My passion in my PD work is to help close the gap of support that exists after a person is diagnosed and the final outcome of their disease. That’s where the helpline comes in and my efforts to reach the newly diagnosed with authoritative, actionable and understandable information. The  self-efficacy training program fits perfectly into the sweet spot of my interests and abilities.”

(The helpline I referred to was my so-far-unrealized effort to supplement National PD help lines with a local one for Tampa. But just wait. I haven’t given up on the idea. God will provide a way.)

My Tampa training partner for PD SELF is Sherry Harlan, a veteran University of South Florida Health administrator. Her organizational rigor nicely compliments my often-puzzling abstract and conceptual thinking.

Sherry and I have already covered some important ground in establishing the program we will begin in September. We have a meeting Place, the Portico, the downtown community space operated by my Hyde Park United Methodist Church. We have a dozen or so early expressions of interest from my compatriots in Rock Steady Boxing and high-intensity cycling programs. We have written a FAQ, which we will share with potential participants.

I commit to writing more in this space about PD SELF as it unfolds in the eight test communities. Stay tuned.

 

Parkinson's Disease

HOW PARKIES FINESSE AIR TRAVEL HASSLES

I learned about several air travel accommodations for a PD traveler on my recent trip to Denver.

 

First, I had a very high boarding number on my flight to Denver. I asked at the Southwest check-in desk whether I could get lower number since I had PD and boarding was a way-big challenge due to mobility and balance limitations.

 

The agent immediately offered-pre board privileges, no proof of condition requested. You load first in pre-board. I profusely thanked her. I received the same consideration on the return leg.

 

My experience is only Southwest. I don’t know the practices of other airlines, but it certainly is worth asking. (My Parkie colleague Kirk Hall tells me every airline he flies offers those accommodations.)

 

Second, when I got to the TSA check-in line, I said I had PD and asked whether there was an expedited security process for Parkies. Of course, she said, it is in our regulations.  “You qualify for our concierge service.” That meant going to the front of the line with my own TSA escort through the process. No questions, no proof required. A dream experience, friends.

 

The TSA accommodation is particularly helpful with the stupendous lines at major airports. (Another story told elsewhere, by journalists, God bless them.) The airline and TSA accommodations appear to apply to care partners as well. I will double check on my and my wife Struby’s trip to Milwaukee this weekend.

 

I am taking no chances about proof for the TSA accommodation. The invaluable, going-to-hospital bag provided by NPF (“Aware in Care” http://www.awareincare.org/whats-in-the-kit/) has a bracelet identifying the wearer as a Parkie. Get the bag. No charge.

 

 

Melissa Barry, PDF’s go-to information person, pointed me to a quite relevant 2013 PDF travel post by Peggy Willocks.

 

Here are relevant highlights from the very comprehensive piece:

 

Communicating Your Needs

“Now that you are ready to go, how can you make sure your needs are met during your trip? Anticipate Murphy’s Law: ‘If anything can go wrong, it will’ no matter what your mode of transportation. To minimize these ‘wrongs’, request special assistance at the time you make your reservations.

“If you are flying, remember that security regulations have tightened. Get to the airport a minimum of two hours before the flight… If you have undergone deep brain stimulation, a note from your doctor will allow you to bypass electronic security and undergo other security checks instead.

 In my experience, airlines and most other major modes of transportation will go out of their way to accommodate customers, or patrons, with special needs.

 

“But what are your rights? By law you have the right to travel alone in the US without discrimination. Even if you are traveling with a care partner, you can request early boarding on any airline if needed, and aren’t required to give advance notice (destinations outside the United States may require advance notice).

 

“Airlines must provide assistance getting on and off the plane (e.g., service personnel, ground wheelchairs, service wheelchairs, ramps and mechanical lifts). There are similar regulations in Europe and Canada.

 

‘You must also have room to store any wheelchairs, canes and other equipment in the cabin and close to your seat.

 Since these accommodations are available, I recommend asking for extra help, and then repeating your needs several times. For example, if you need an electric cart or wheelchair service, tell the ticketing agent, then tell the airline representative when you are boarding the plane, and as a final check, give the flight attendant a friendly reminder just before landing.

 

“Do not assume that you ‘may’ be functioning well later — it is better to be safe than sorry.

Do you have to reveal that you have Parkinson’s? Absolutely not. Once you state that you have special needs, or need extra time to board a plane, that’s all you have to say. No one needs to know why, unless you want to tell them.”

 

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My Personal, Non-PD Post About My Past

 

I wrote this June 12 to my fellow graduates of the Milwaukee Country Day School (MCDS), 60 years ago. It has since become the University School of Milwaukee through merger. It is an extraordinary class of 28 men. Among them are eight earned doctorates, at least four lawyers and a scribbler. Twelve of the 28 will gather in Milwaukee next weekend.

…………………………………………………………………………………………………

 

I am gratified by how many have chosen to make our get together two weeks hence: Bob Schmidt, Carl Backus, John Carpenter, John Hazelwood, John Oster, John Mason (our parents sure liked the name John), Larry Church, Ron Susnar, David Barrow, Steve Garlick and Bob Miller.

 

Our experience together at MCDS clearly had lasting impact. If not, this enormous turnout (12 of 28 in our graduating class) would be simply a fantasy. (The memories of deceased or disabled classmates–Bill Wallin, Ned Nicholson, Tom Gorder, Ted Husting, for four–walk with us.)

 

My strong, emotional connection to the collective “you” springs from coming of age together: My first academic stumbles–that’s you Latin-meister Harvey Ramaker. My out-of-control, first-love experience — that’s you Vicki (Krause) Mayer. My member-of-a-winning-team-exhilaration–that’s you football genius Ken Laird. My endgame, academic confidence–that’s all you splendid Country Day faculty and staff.

 

Ours was an essentially placid and settled time. WWII was behind us. The 60s cultural revolution awaited us. Our vocational, community and family paths were mostly circumscribed. We embraced standard callings (medicine, law, business and academy) and traditional domesti expectations (one spouse, for the duration.)

 

Our accomplishments, in that frame, border on the spectacular– eight doctorates, by my count…at least three jurisdoctors…a large handful of successful business leaders…and one news guy, me. We can claim two graduates of Princeton, three of Yale, two of Harvard, and one each of Dartmouth, Amherst and Duke. Affirmative action in the 50s meant the Ivies looking beyond their borders all the way to the Midwest and beyond for recruits. Lucky us.

 

On a personal note, my journey on the traditional road crashed after college. I sabotaged a family-implanted vision of being an MD with my stronger attachment to the tools of a quasi-social scientist and passionate observer, namely journalism tools.

 

Most of you know my subsequent story: Washington reporter, newspaper editor/publisher in the Carolinas and Florida, writing teacher at the University of South Florida. My insane, first marriage broke up in 10 years. While producing two spirited and very bright children (another two came in my second marriage), it also led to an ungodly, protracted and expensive divorce.

 

I look forward to listening again to your stories of mostly rises and a few cleansing falls.

 

I am struck by how many of our early personas have persisted for what will soon be eight decades. Dr. Robert Miles Schmidt, the fidgety and precise field general at quarterback. Bob Buettner, tackle, effervescent lover of life. John Hazelwood, tackle, tart-tongued and insightful analyst (“Country Day was Athens in the classroom and Sparta on the playing fields.”) Charles Walter (Alexander Hamilton) Backus, guard, stolid traditionalist, analogue holdout and opera devotee. Dr. Steve Garlick, class enthusiast and cheerleader. Dr. David Kieft, guard, deeply cerebral, master of the pithy exclamation.

 

Our 60th reunion promises to be heart-warming and brain-draining. I seriously doubt (but could be proven wrong) we will need anything larger than a coat closet for a 70th.

 

I can hardly wait, as evidenced by this screed.

 

See you in Milwaukee.

 

 

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ITEMS FROM THE SHUFFLING EDITOR’S INBOX

HAUSER TESTING INSTANT RX FOR PD OFF TIME

In case you missed the recent Times story on Dr. Robert Hauser’s clinical trial of breath strips of apomorphine, here it is. Reporter Kathleen McCrory did an exemplary reporting and writing

UPDATE ON PALLIATIVE CARE PROJECT

I’ve written before on the Denver-led, international trial of a redesigned and reconceptualized Palliative care model for PD. Here’s an update on their progress.

“This is a multi-center, randomized controlled clinical trial aimed at determining if an outpatient, multidisciplinary, supportive care clinic that incorporates the principles of palliative care can help improve quality of life for people with PD and reduce caregiver stress. In our study, people with PD randomized to the Treatment Arm will receive care over the period of a year in the Parkinson’s Disease Supportive Care Clinic, which includes care from a movement disorder trained neurologist, a nurse specializing in the care of people with Parkinson’s disease, a social worker, a palliative chaplain, and a palliative care specialist. These individuals will continue to receive usual care from their primary medical doctor and their primary neurologist, at the same me they get palliative/supportive care from our team. Those people with PD randomized to the Usual Care Arm will contribute to data collection every three months. These individuals will also continue to receive usual care from their primary medical doctor and their primary neurologist. “

DIANE AND JOHN REHM’S BRUTAL JOURNEY

Diane Rehm hosts an NPR public affairs radio show. Her husband John Rehm suffered from PD at his death. Diane discussed his final years in heart-rending detail. He ended his life by refusing water and food for 10 days.

The story left me wondering what kind of PD support network the Rehms had. The podcast is not for the faint hearted, but it is riveting.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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TAMPA ROCK STEADY BOXING: A CALL TO ACTION

Up from your chairs, Tampa Parkies! It’s time to get serious about Rock Steady Boxing. It’s in our backyard now, not just far across the Bay.

From the corridors of USF Health to the meeting rooms of support groups, I have been hearing this from you for months: “If only RSB would jump the Bay, we’re game for the challenge. BUT the drive to Largo is too far.”

Tara Schwartz, director of the Largo RSB program, took my nagging and your concerns very seriously. She put money on the barrel head and leased space for a Hillsborough RSB program near Westshore. It’s in the Performance Compound, 5850 W Cypress St.

She needs a dozen additional Parkies to start the program.  (That’s in addition to the three of us transferring from Largo.) Her Tampa director and niece, Jordan Whittemore, has but half that at last check.  The rigorous but deeply caring Whittemore is a recent USF grad in physical therapy.

Don’t worry that RSB will be too much for you. Largo has two grades of RSB, regular and high test–or as one wag put it JV and Varsity. Varsity is for those with less impairment. JV for those with more impairment. There is almost certainly a place for most of you.

Whittemore is starting with the Varsity program in Tampa. It will meet from 1:30 to 3:00 M-W-F. A JV program will be added as needed. You pay a monthly fee for all the gym facilities. My cost at Largo is roughly $6 a session (plus gas for three 94 mile roundtrips a week from Tampa Palms). Call Jordan at 727-276-8431 to get started on assessment and enrollment. Please do it now.

You have heard me say this before: RSB is my best PD medicine. I have gone from one “bad” day a week to virtually none. (I also credit the interval, high-speed spinning I do twice a week at the South Tampa and Carrollwood Ys. Still, RSB is the big therapeutic gun.) Exercise, plus finely-tuned meds, plus expert care from my MDS Juan Sanchez-Ramos have provided me a full, vigorous and mostly normal life.

To see what RSB is like in action , go to the website
https://www.rocksteadyboxing.org/videos/ and open the YouTube video “We are Rock Steady Boxing.”
Additionally, I came across a past Tampa Bay Times story that  I had missed about the Largo RSB program. Have a look.
http://www.tbnweekly.com/editorial/health_news/content_articles/112415_hth-01.txt