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SEEKING A FEW ADVENTUROUS PARKIES

 

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.

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Rotary Supports Tampa PD Training

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).

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Benzi’s Distilled Wisdom and a Rock Steady Reminder

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

Must Read, Parkinson's Disease, Parkinson's exercise, Support Groups

Two Major Advances for Parkinson’s Care in Tampa Bay

 

I returned Sunday from Denver where I participated in the national rollout of the most exciting self-help program for PD that I have ever experienced.  Tampa Bay is one of eight metro areas chosen to pilot a national training program like no other. It provides Parkies the knowledge and tools to become masters of their treatment in order bend their PD trajectory in the right direction.

Tampa joins Richmond, Detroit, Houston, Phoenix, Denver, Boulder and Philadelphia in piloting this national program. One Parkie evaluator called it “life changing.” (I enthusiastically agree it will accomplish that for most enrollees.) The presenting organization is the Parkinson’s Disease Foundation.

 

The program is Self-Efficacy Training customized for PD. Between 26 and 36 newly diagnosed Parkies and their helpmates will meet once every month in two and one-half-hour sessions. They will start in September 2016 and finish in June 2017. Participants will acquire the disciplines and skills necessary to take charge of their condition, becoming captains of their treatment teams.

 

This contrasts with the all-too-common wandering in the PD jungle of confusion and ignorance dealt many new Parkies today. I will co-lead our program with Sherry Harlan, an experienced and dedicated USF health administrator.

 

For me, this program is a high point in my work to help Parkies escape the passivity and despondency that grips many newly diagnosed Parkies.

 

I also learned today that Hillsborough is getting its first Rock Steady Boxing program. It is owned and directed  by an experienced therapist I trust. It will open soon in the Westshore area near downtown Tampa. The only existing Tampa Bay program is in Pinellas County just east of Indian Rocks Beach, a very long haul from most of Hillsborough County. I will transfer my Rock Steady training, halving the 94-mile roundtrip. It will need recruits beyond me. Interested Parkies should email  me at gthelen1@icloud.com.

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Revisiting Dementia Risk in PD

For many of us Parkies, dementia is the greatest fear. The medical literature typically refers to “many” of us being destined for some form of it (example “Parkinson’s Disease Q&A, Seventh Edition,” Parkinson’s Disease Foundation). I’ve read estimates up to 75%.

But is our real risk lower? “Fortunately, dementia occurs in only about 20% of people with Parkinson’s disease, “ according to a 2015 review of Parkinson’s dementia in “EMedicine and Health.”

“If patients experience hallucinations and have severe motor control (problems versus tremor predominance), they’re at higher risk for dementia. The development of  dementia is slow.  Typically,  people that (sic) develop symptoms of dementia do so about 10 to 15 years after the initial diagnosis of Parkinson’s disease.”

The review goes on to say: “Some researchers suggest that at least 50% of people with Parkinson’s disease have some mild cognitive impairment and estimate that as many  as 20% to 40% (of those) may have more severe symptoms (of) dementia.”

Who Gets PD?

The Neuro Institute of Sarasota answers this way: “We used to think it was associated with professions such as arc-welding or steel mill work, but more recent studies have not confirmed this; in fact, it seems to be more prevalent in engineers, accountants, and doctors, suggesting that these patients are more likely to seek help and be diagnosed.”

Sensory Loss in PD

For some of us, sensory loss frustrates our everyday routines. My reduced sense of feel in both hands makes for too many incidences of the “dropsies.” My temperature control is often haywire, making me feel hotter than the actual room temperature would suggest.

The possible reason? A 2008 study of skin samples by Maria Nolano, etc. shows a significant loss of sensory nerve ends in the hands of parkies.

Recommended Reading

Two recent articles are worth your attention. Barbara Peters-Smith, medical writer for The Sarasota Herald-Tribune examines the extensive and very impressive PD support and treatment options in Sarasota County, including, two, (count them two) care and treatment organizations. Eat your heart out Hillsborough and Pinellas parkies.

The second article of note is ESPN’s long feature on Rock Steady Boxing, which again raises the question of when Hillsborough will get a franchise.