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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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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