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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.

 

 

The PD community, I have learned, is full of extraordinary people. One is Valerie Herrero, a can-do personality who is a feverish stationary biker. She is spouse and caregiver for Gerard Herrero. I know both from the North Tampa support group and the Y cycling program for Parkies at Northdale. She radiates energy and conviviality, lighting up any space she occupies.

 

Valerie recently told me about their vacation trip to Marco Island. I was extremely impressed about their experience of life in the active Marco PD community. I asked Valerie to write about their experience. Here is the edited version of her fine account.

 

“This year, before our vacation to Marco Island, we decided to Google for Parkinson activities in the area. To my surprise, I found the Parkinson’s Association of Southwest Florida (PASFI). I was bowled over by their website. I found information about free programs and services, including social, educational and exercise.

“When we arrived, we found and experienced passionate, enthusiastic volunteers eager to make our vacation memorable.

“With open arms, they shared with us the PASFI mission, how their association got started and how they serve the Parkinson’s community with free programs and services. They invited us to attend their events and gave us information, including Parkinson’s exercise CDs to take home.

“We decided to check out the Rock Steady Boxing Program at the Marco Island YMCA. There we met Gustavo Sita, a certified Rock Steady trainer. Gustavo and other Parkies took us under their wings for two sessions.

“The prior winter, the YMCA Rock Steady Boxing program had more than 40 regulars. The YMCA is preparing to expand the program this fall.

“Another afternoon, we met Susan Branco, who conducts special therapeutic exercise programs for PASFI. Susan has developed unique strengthening programs. They combine music with easy movements using bands, balls and weights while seated or standing next to a chair.
“Again, like so many others we met in Marco, her devotion and passion for helping Parkies improve their quality of life through exercise was striking.”

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.

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

 

Riffing on the Marine Corps ditty, I am seeking a Few Adventurous Parkies. Your mission –if you have been diagnosed with PD three years ago or less –is to join a gungho, potentially life-changing Tampa-area adventure named PD SELF.

WHAT IS IT?

PD SELF is a validated training program that provides People With Parkinson’s Disease (PWP) the knowledge and tools necessary to become masters of their treatment plan. That mastery enables you to bend your PD trajectory in the direction you desire.

Many people are handed the diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means 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.

A central focus of PD SELF is to help people strengthen self-efficacy beliefs, thereby positively influencing the management of their disease.

 

WHO IS A CANDIDATE FOR PD SELF?

We are seeking newly diagnosed patients, ideally less than three years ago. We will consider people diagnosed more than three years ago for our stand-by group. A major criterion for selection is demonstrated proactivity in PD and non-PD pursuits. An electronic application will be available soon. August 15 is our target for completion of selections. Please download Skype for an interview with group facilitators.

 

WHEN IS IT AND WHO WILL BE INVOLVED?

From 13 to 18 PWP, plus an equal number of their care partners, will meet once a month from September to June. Each session will last 2 1/2 hours. Meeting day is Thursday. Meeting time is negotiable between facilitators and participants but will be between 10:00 a.m. and 4:00 p.m.

 

WHERE IS IT?

The training will be at the Portico, an urban, outreach extension of Hyde Park United Methodist Church. Portico is at the intersection of Florida and Tyler Avenues. Street address is 1001 N. Florida Ave.

 

MUST I ATTEND EVERY SESSION?

Barring an unforeseen emergency, yes you must. Each module contains tightly compressed information vital to full understanding of PD and its many complexities.

 

WHO SPONSORS THE TRAINING?

Program sponsor is the Parkinson’s Disease Foundation. Greater Tampa is one of eight cities chosen to receive this national program

 

WHAT’S THE COST?

None. It’s free of charge to participants.

 

WHO ARE THE PD SELF FACILITATORS?

USF Health administrator Sherry Harlan and me.

HAVE QUESTIONS?

Contact me at gthelen1@icloud.com, 813-787-3886 or Sherry Harlan at sharlan@health.usf.edu, 813-396-0768.

Incoming Rotary District Governor Joyce Ann Gunter supports the scheduled Tampa self-efficacy training for newly diagnosed Parkinson patients.

“This sounds like a terrific opportunity to really provide much needed assistance to PD patients,” Gunter wrote in an email message. “I support you and this effort and will do what I can to help make this happen.”

Gunter went on to say she will seek to cover the $2,000 startup costs of the program.

With Gunter’s pledge, Rotary District 6890 becomes the Tampa PD program’s lead sponsor. The Rotary district comprises Hillsborough, Polk, Highlands and Hardee counties.

Joyce’s Rotary club and mine, New Tampa, counts four PD cases in recent years. The nearby Temple Terrace club has three among 30 members, a membership half the size of the New Tampa club. Experience shows PD touches many households directly–or along the branches of the family tree.

I will speak about Parkinson’s and the self-efficacy program at as many District 6890 clubs as will have me in the coming Rotary year. Self-efficacy is the belief that people can positively influence the conditions that affect their lives.

Tampa is one of eight sites for the national training that equips People With Parkinson’s to (1) build their personal support team of professionals (2) take command of their PD (3) bend the trajectory of their condition in the desired direction. The national program is directed and sponsored by the Parkinson’s Disease Foundation.

My training partner is Sherry H. Harlan of the USF Byrd Parkinson’s Disease and Movement Disorders Center. We aim to begin the group with between 26 and 36 Parkies and care partners in September. Location is The Portico in downtown Tampa.

The Portico is the downtown initiative of Hyde Park United Methodist Church. Our thanks go to Justin LaRosa, Portico’s directing minister, for his enthusiastic backing.

The self-efficacy training will be for 21/2 hours once a month for nine months. The modules include Building Your Healthcare Network, Medications and Treatments, Exercise and Neuroplasticity (growing new neurons), Cognitive and Nonmotor Symptoms, The Care Partnership, and Complementary and Alternative Medicine.

Formal application forms are not yet available. For additional information and informal expressions of interest (awaiting application form) contact me at gthelen1@icloud.com (telephone 813-787-3886) or Sherry Harlan at sharlan@usfhealth.edu (telephone 813-396-0768).

An unforeseen benefit of my national PD work has been the extraordinary people I have met. The Denver group of groundbreaking clinicians, researchers and visionaries are atop that list.

I think of my friend, collaborator and fellow activist Kirk Hall, who is cutting new ground in reimagining Palliative care through Parkie patient eyes.

Diane Cook’s painstaking mission to develop self efficacy training for newly diagnosed PWP is a marvel. Her wordsmithing expands the PD vocabulary. (“Helping can be unhelpful,” for one. “Realistic optimism,” for a second.)

Then there is Dr. Benzi Kluger, a clinical and research MDS at the University of Colorado whose teaching and communication skills are off the charts.

I just finished viewing Benzi’s riveting webinar on PD’s non motor manifestations. I have seen, read and experienced similar presentations.  This is far and away the best. Take 30 minutes and be mesmerized as I was. (A shoutout to John Dean of the Davis Phinney Foundation for calling this to my attention. He’s another Denver-area PD activist, wouldn’t you know it.)

Also a REMINDER  to contact Jordan Whittemore for enrollment information about the new Tampa Rock Steady Boxing program. Her number is 727-276-8431.

From Jordan: “Each participant is required to do an initial assessment. We will be starting the program and assessments ‪June 1st. Classes will be Monday, Wednesdays, and Fridays ‪at 1:30pm. Classes & assessments will be held at the Performance Compound located at ‪5850 W Cypress St, Tampa, FL 33607