Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura

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


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.

Uncategorized

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.

 

Uncategorized

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

Uncategorized

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.”

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Gil Thelen
YEAR INDUCTED:
2016

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.

Parkinson's Disease

PD SELF TRAINING LAUNCHED IN TAMPA

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.
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Uncategorized

Where would you be without your voice?

Editor’s note: This important guest post is by Cara Bryan. Bryan is a licensed speech language pathologist and LSVT certified clinician in private practice in Tampa. I know her work first hand. She is very good. More about Bryan is appended to her post. Gil Thelen

Parkinson disease (PD) has one of the highest rates of communication difficulties among progressive neurological diseases.

Bet you didn’t know that. It’s not a conversation staple at support group meetings, much less during visits with your neurologist

It’s treatable with speech therapy services using the LSVT LOUD approach.

Consider the case of the “Professor.”

Professor was the former Dean of a University English Department. He was in his early 50s and had been diagnosed with PD within the past two years.

He was referred by his neurologist for speech therapy. Professor presented with slouched posture, shallow breathing, and vocal strain when speaking.

He spoke quickly and whispered without any inflection. His face appeared flat and expressionless. His conversational loudness measured between 48-56 dB, which is significantly below the normal 65-75 dB level in a quiet room at a 3-ft distance.

Professor explained that he had recently had to step down as dean because he could not meet demands. His true passion was teaching, and he was extremely close to losing that job too.

He explained that he had significant difficulty making himself heard in his classroom. Professor described his previous self as outgoing, garrulous, “never met a stranger” kind of person.

Now students frequently asked for repetition and clarification. At times he had difficulty obtaining and maintaining their attention.

All the desks were moved close to the front of the classroom. He started using amplification but didn’t like it. He tried strategies for more student involvement and less lecture time. But he was exhausted trying to adapt to his communication decline.

Professor’s impaired communication extended beyond the classroom into all aspects of his life: Being heard over the phone, in noisy restaurants, at home with his wife and two teenage children, ordering in the drive-thru line, etc.

He reported withdrawing from conversations, avoiding speaking, and speaking significantly less. He nearly ceased socializing and was becoming more home bound.

Professor admitted to symptoms of depression, feelings of poor self-worth. Professor’s difficulty being heard was affecting his persona, his sense of self, and his livelihood. He was a spectator to life.

Approximately 80-90% of individuals with PD have or will have difficulty communicating. Common symptoms include a quiet voice (nonfunctional loudness), vocal hoarseness, strain and/or breathiness, fast rate of speech, monotone-sounding speech and stammering.

Often stooped posture and shallow breath support further impair the ability to communicate. Word-finding deficits and loss of thought process during conversations can occur in tandem.

Persons with PD are often NOT the first to realize they are speaking differently. This is due to the neurological phenomenon known as sensorimotor misperception, which is a hallmark symptom of PD. Sensorimotor misperception is a mismatch between what a person self-perceives and the corresponding muscle movement.

Shuffled gait, quiet voice, mumbled speech, shallow breath, and small handwriting are examples of common small muscle movements in PD

In other words, if a person with PD perceives his/her voice to be of “normal” loudness, the brain sends corresponding messages for small muscle movement to produce speech/voice.

Often the person with PD reports “my spouse is hearing impaired.” In reality (and regardless of the spouse’s hearing acuity), the voice is measurably soft. Many persons with PD experiencing communication difficulties are able to produce normal loudness levels given clinical guidance, high effort and conscious thought.

Professor’s quiet, nonfunctional communication was treated with a protocol of speech therapy called LSVT LOUD. Designed specifically for people with PD, LSVT LOUD targets sensorimotor misperception by re-calibrating a person’s perception of required physical effort for appropriate loudness. The LSVT LOUD approach strives to elicit best quality voice with controlled loudness on “Ahhh.”

The mechanics of good quality loud vocal production include upright posture, relaxed, deep inhalation, and loud voicing using exhalation without straining the throat muscles.

Professor completed several loud Ah’s with clinician coaching and modeling for good quality voicing. He was instructed to maintain an effort level of 8 out of 10 (10 being the highest possible) during the exercises to assist with his physical awareness and loudness level.

Using this approach, the first time Professor repeated the clinician-modeled loud voice, he echoed the sound perfectly. Moments before the loud “Ah,” Professor’s voice had been whispered. To combat monotone sounding speech, a series of ascending and descending pitches were repeated with loud, good quality “Ahhh.”

The LSVT LOUD approach continues through a hierarchy of speech tasks across a 4-week time period of 16, one-hour sessions. The aggressive treatment protocol serves to reduce the amount of physical effort and ultimately automate “normal” conversational loudness.

Upon completion of speech therapy using LSVT LOUD, Professor improved his vocal loudness and quality to normal. He was acutely aware of the required effort for his “new normal” loudness.

He was immediately successful in the classroom and throughout his daily communication. His mood and outlook improved significantly. His face was expressive when he spoke. He was successfully participating and initiating conversations. He rarely had difficulty making himself heard. He was socializing. Professor reported he had found his voice again, and by doing so regained himself. He taught for many years after.

The LSVT LOUD approach allowed Professor to return to himself and maintain employment. Professor is one example of a common experience of people with PD. Successful communication is directly correlated to one’s personality, the sense of belonging, self-esteem, livelihood, pastime, interpersonal skills, EVERYTHING. People with PD should be aware that with speech therapy services, they can fight to maintain their voice.

 

About Cara Bryan

Cara has lived in Tampa since 2003. Cara is busy with her husband and two children. She sings in the church choir, performs solo work, exercises, enjoys her children’s sports and activities, and is an avid Carolina Tar Heel fan.  

Cara received her master’s degree from the University of Iowa in speech-language pathology and her undergraduate degree from The University of North Carolina at Chapel Hill in music-vocal performance and linguistics. 

Her special interests include vocal rehabilitation of those with Parkinson disease, professional voice users, vocal cord dysfunction, and chronic cough. As a young child, Cara was exposed to Parkinson disease with her paternal grandmother and developed a calling to help those with the disease.

Bryan is in private practice. She can be reached at carabryan@gmail.com and 813-728-6601.

 

 

Parkinson's Disease

Please Support This Very Worthy PD Training

 

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 SUPPORTEDUCATION 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

 

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.

 

 

 

 

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