Category: Parkinson’s Disease

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, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

gthelen

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? 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 the 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.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.

MY PARKINSON’S CRASH COURSE

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we cannot only live well with Parkinson’s, one day we can end it.

 

 

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.

Parkinson's Disease

PD SELF TRAINING LAUNCHED IN TAMPA

gthelen

Tonight, our ample home will be filled with 50 or more people connected to Parkinson’s disease in the Tampa Bay Area. Sad stories not allowed entry. We will have a grand time plotting a counter offensive to this stealthy and frustrating neurological disorder.

There will be people with Parkinson’s (Parkies is my favorite identifier for the approximately 1,000,000 Parkinson’s sufferers in the U.S.) There will be care partners, medical providers and sponsors of a very powerful learning and action program to harness and bend PD’s course. The program is called PD SELF.

It will engage the 21 recently diagnosed Parkies (fewer than three years) and their care partners for the next nine months. They will graduate with the knowledge and tools to build their personal health care team. Lying at the heart of the program is the vital notion of hope in the face of an incurable neurological disease

The Parkinson’s Disease Foundation explains the background of the program this way:

“Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

“Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

“PD SELF (Self-Efficacy Learning Forum) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a clinical trial sponsored by the Colorado Neurological Institute.

“Based on the psychosocial theory of self-efficacy, PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease.

Self-efficacy is 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. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.”

I am privileged to be a co-facilitator of the Tampa training along with Sherry Harland of the USF Health group. Our site was chosen in competition with other cities and is one of eight around the country undertaking the program this year.

I recently wrote participants about my personal experiences related to this undertaking.

I did it in a rather idiosyncratic manner because I’m a bit idiosyncratic myself, perhaps eccentric.

My email to them described my background in college (Duke) and graduate school (Cornell University Medical College).

I started as a “play-by-the rules, color-inside -the-lines, please-your-parents, overachiever.”

Then came the Big Problem: I had a medical aptitude and a public-affairs aptitude, in about equal doses. (History major and pre med.) So I went to med school, passed my first two years, and then …..drum roll……my whole being said STOP!

Medical book learning was OK. I passed my first two years. But I hated the hands-on stuff; I liked my freelance writing a lot better.

I stopped formal MD traning. I did two more years at Cornell in medical research. I was making time to deal with my family conflicts.

Drilled into me at home had been this nasty: “To be a man is to be a doctor.”

Oh so wrong-headed and dangeous.

A skilled therapist helped me light the dawn. I left the medical bosom and pivoted to news reporting. (I had prepared for that AP job in a very odd and expensive way. I ultimately became probably the only newspaper editor of my generation to train for journalism in med school.)

My lesson learned, applicable to Self Efficacy and PD: Sometimes powerful forces within us prevent us from recognizing a change of course we must make to manage a stunning new problem e.g. a diagnosis of Parkinson’s.

I used teambuilding and self empowerment practices to develop the news organizations I lead. My staffs said that they liked coming to work to produce a paper customers would want to read

In fact, I was fashioning self-efficacy tools when such a concept, if specifically named, might face derision from world-weary and skeptical journalists.

Final thought I gave the Selfies about me: Since my early buttoned-down day, I have become an impassioned advocate for enterprises that bring out the best in people, nurture smart risk-taking and havetheir eye on the future.

That’s you newsroom of the future. (Tampa’s before-its-time News Center)

That’s you urban church of the future, (The Portico, our downtown meeting place.)

That’s you Parkies who create new support, empowerment and accountability forums.

What made me a creative editor, in turn, made me an effective college teacher. The tools for both used the collaborative approaches of PD SELF.

My lived beliefs and values– sharpened by my PD experiences– are these: Face the truth. Call it by its right name. Speak truth to power and live authentically. Nuke passive aggression. Embrace hope. Check your fears at the door. Make God’s Love Real. Every day, live in the “Now” and have laughter ring in your voice.
-30-

Parkinson's Disease

Please Support This Very Worthy PD Training

gthelen

 

When I started my PD writing and work in Tampa two years ago, I could not find  much going on for local Parkies.  Sarasota, yes, with Parkinson Place.  Hillsborough and Pinellas, not so much.

Today the PD landscape is much different in North Tampa Bay. We have the JCC program, NPF choral and voice initiatives and PDF’s PD SELF training program, the one I am co-faciliatating.

 I salute the tireless Darla Freeman for her many  program contributions. See her reminder below and do participate if at all possible.

PLEASE HELP SPREAD THE WORD FOR OUR NEXT FREE EVENT:     LOVE LOUD PD GROUP…SET FOR PARKINSON’S   (This group is supported by NPF Grant T05_PD Voice Therapy Program)

The Love Loud group provides SUPPORT, EDUCATION and TRAINING for persons with Parkinson’s disease, their care partners and the community.

Our Vision:  

  • Aftercare program for maintaining functional daily communication for people with Parkinson’s disease
  • Enhance quality of life for people living with Parkinson’s disease

Our Mission: 

  • SUPPORT:  Centralized resource to connect with local, regional, state, national and worldwide organizations to disseminate information  (NPF, APDA, IMD)
  • EDUCATION: Facilitate interactive updates in Parkinson’s disease.  Provide a forum for professional and community education.
  • TRAINING:  Inclusive and supportive groups aimed at encouraging functional communication.

Meeting Date:  Monday August 15, 2016

Time: 2pm-3:30pm

Location:  Jimmie Keel Regional Library 2902 W. Bearss Ave., Tampa, FL 33618 Meeting Room A

Topic:  To Eat or Not to Eat:  Managing Swallowing and PD

 

Parkinson's Disease

Gearing Up PD SELF

gthelen

 

I share a letter I wrote to enrollees in our upcoming training program for recently diagnosed Parkies, PD SELF. It employs principles of self efficacy to assist PWP engage their condition and manage it more effectively.

 

My thinking behind the letter was to stay in contact and start building the culture we want to govern the group: openness, honesty, vulnerability, engagement, purpose-driven, fearlessness.

 

Here’s the letter, slightly edited for relevance and privacy:

Pd Selfers:

 

We suit up in the great cause of owning our condition (not vice versa) in just over a month. The golden ring is you assembling and captaining your own PD care team.  Sherry and I hope you will accomplish that during and after our months together.

 

I have invited all members of my growing care team to join the launch party ‪Aug. 27.  It is my privilege to present: My always available internist and team quarterback Lucy Guerra; MDS and artist-in-residence Juan Sanchez-Ramos; Rock Steady RTs Jordan Whittemore and Tara Schwartz;  speech therapist Cara Bryan (who says she forgives me for going to a school nine miles distant from UNC); spiritual guide and liberated persona Justin LaRosa (our meeting place host and director of The Portico, my church home.)

 

I am inordinately proud of my all-star team. They are practitioners of their callings at the highest level.  They are professionals but also craftsmen(bi-gender word) in the very best sense of painstaking performance, always.

 

Please locate them at the party (name tags will help you find them.) Don’t be shy. Ask them any question, seek referral advice…….and pump them for dish on me and Sherry.

 

Committed Selfers now number 10, and we hope to grow our numbers this month. Our ranks include a not-so-retired dentist, a no-word-muted dynamo, and a woman with names galore who has rarely encountered a worthy cause or person she has not helped.

At the party you will also meet several veteran Parkie couples whose mental strength and resiIience I so much admire. They are Gerard and Valerie Herrero and Ron and Dori Ingersoll.

 

In coming weeks, we will ask you to write about yourself for the benefit of other group members. There will also be some advance reading we will ask you to do to get off to a fast start in September.

 

Everything Sherry and I have learned about each of you gives us great confidence the program will be a huge success.

 

Care Partners are crucial ingredients in the SELF program. They learn and grow in knowledge and commitment alongside you. Denial, acceptance, hope, journey planning, plus many more joint issues, are important ingredients of the health stew we create together.

 

 

 

 

\

 

Parkinson's Disease

Atlanta Airport 1, Parkie 0

gthelen

Herewith the saga of one Parkie and the dreaded Atlanta airport. (Parkie, for the uninitiated, is a person with Parkinson’s disease, like me.)

 

I left a NYC business meeting last week headed for Atlanta. My Southwest flight was scheduled to arrive Atlanta 10:50 PM. It didn’t

 

I landed instead at 1:15 a.m. Had 30 minutes to make last hotel shuttle van. (To claim last room in hotel.)

 

That’s due to you, Southwest, the airline that maxed out and crashed its computer system the day previous, bringing Thursday’s customer nightmare

 

Late night, reduced schedule for airport internal subway cost me time. After subway, “sprinted” through terminal as only an exhausted Parkie can do, slowly, losing an orthotic insert for my shoe in process.

 

I was five minutes late for scheduled departure of last shuttle. But driver was still waiting. Not for me, I learned, but for a hotel employee he had taken a shine to.

 

I crept aboard van VERY slowly. Said driver asked why so difficult? Parkinson’s, I answered.

 

I placed my two small bags and myself in the front seat on the right. Floor and luggage rack on my immediate left.

 

Said female hotel employee follows me aboard, greeted by this from driver: “You are the ONLY reason I didn’t leave on time. I wanted to see you.”

 

Driver proceeds to drive to hotel, fast, very fast, as if to demonstrate his driving prowess. So fast in fact that final cloverleaf exit ramp required my very hard lean against centrifugal force.

 

Force won, hurling me to floor and then against luggage rack. (My well executed, football, Rock Steady roll to right shoulder protected against serious injury.)

 

Driver stops van and helps me off floor. I remind him I said I had PD. He says he had warned me to use seat belt (No such seat belt conversation ever happened. I was too tired to even notice belt was there.)

 

He becomes obsessive, repeatedly asking “Are you okay?” I can visualize liability cartoon-balloon above his head, saying “Lawsuit. Lawsuit. This could be bad.”

 

Aftermath:  I remain sore on upper right side of body. Otherwise OK.

 

My Parkie Pal Laura had this to say after hearing story: “Sorry about the effingerous night you had. Effingerous: Effing + dangerous.”

 

Moral of story: “Beware shuttle bus guys who lust while driving.”

 

 

 

 

Parkinson's Disease, Parkinson's exercise

Valuable New Exercise Routines

gthelen

I am spending time at New Smyrna Beach this month. The vacation break, while soothing, is taking away my exercise routines at Rock Steady Boxing and interval cycling.

I received an email a few days ago that has very nicely filled my PD exercise void. It’s from Jim Stoll, a man I don’t know except through email correspondence. It lays out an exercise program related to the “Big Program” I took at Florida Hospital-Tampa shortly after I was diagnosed in 2014. It’s named PWR! (Details to come.)

First, about Jim Stoll. He describes himself as a 69-year-old man with advanced PD. He continues: “I was diagnosed … in 1970 after a carbon monoxide poisoning incident. Things did not get real bad till 2014, 44 years later. Now my body just quits listening to my signals. I also have sacroiliitis which makes walking of more the a few hundred feet quite painful.

“I had MoveBig therapy once about a year ago, and it helped some. Then I learned about Parkinson’s Wellness recovery PWR!, which, from what I understand, is MoveBig version 2.

“I am very excited about PWR! It implements research-based neuroplasticity-principled programming in rehab and fitness settings

“PWR! is centered around four moves –up, rock, twist and step –and is done in five positions prone (lying face down), supine (lying face up), sitting, standing and all fours.

“I have been doing the PWR! moves in the supine position for about a month. Both my wife and I have noticed a definite improvement in my ability to walk.”

Jim provides YouTube URLs that demonstrate the moves. Some of them are part of of the Rock Steady floor routines I know very well.

RESULTS BASED: PWR! Training – Unfreezing for an individual with Parkinson disease with severe freezing: https://www.youtube.com/watch?v=bz_dQnvuNfY
A LOOK AT THE PWR POSITIONS
PWR! Moves Positions – Standing https://www.youtube.com/watch?v=Y6Wtd13lwrc
PWR! Moves Positions – Sitting https://www.youtube.com/watch?v=TDBVDCkkxV0
PWR! Moves Positions – All 4’s https://www.youtube.com/watch?v=oXUzOmfPwD8
PWR! Moves Positions – Supine https://www.youtube.com/watch?v=UOVcVPUGEHM
PWR! Moves Positions – Prone https://www.youtube.com/watch?v=ZFhk73ydmto
PWR Moves! Let’s Get Moving! (group exercise session) https://www.youtube.com/watch?v=yPspiGqHinA

Introductory Breath Flow for Parkinson’s Wellness Recovery (PWR!) https://www.youtube.com/watch?v=POiAkJeFSRs
AN EXPLANATION OF THE PWR PROGRAM
PWR! Gym Social Week 1 – Em-PWR!-ment https://www.youtube.com/watch?v=H2Pcbfqt7Sc
PWR! Gym Social Week 2 – PWR! Nutrition https://www.youtube.com/watch?v=6Amei5OkK1I
PWR! Gym Social Week 3 – PWR! Teamwork https://www.youtube.com/watch?v=GhBIXwrQ4eU
PWR! Gym Social Week 4 – Optimizing Your Meds with PWR! https://www.youtube.com/watch?v=B6ZlIKaBQHo
PWR! Gym Social Week 5 – PD Specific Exercise https://www.youtube.com/watch?v=yMsUKsl4G_M
PWR! Gym Social Week 6 – Big, Fast, PWR!-ful https://www.youtube.com/watch?v=SdrPPUFXooU
PWR! Gym Social Week 7 – HOW to Exercise with PWR! https://www.youtube.com/watch?v=6w6a3SBuTVo
PWR! Gym Social Week 8 – PWR!Moves Intro https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 9 – PWR! Up with Emily https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 10 – PWR! Rock with Jennifer https://www.youtube.com/watch?v=41mH1dCZ9Pk
PWR! Gym Social Week 11 – PWR! Twist with Emily https://www.youtube.com/watch?v=GELblae395s
PWR! Gym Social Week 12 – PWR! & Brian Grant Foundation’ Power Through Project’ Trailer https://www.youtube.com/watch?v=DEOGY0-9xvk
PWR! Gym Social Week 13 – PWR!Step with Jennifer https://www.youtube.com/watch?v=oPxIdrMq4Ik

Parkinson's Disease

HOW PARKIES FINESSE AIR TRAVEL HASSLES

gthelen

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.”