Category: USF

The University of South Florida

Davis Phinney Foundation, National Parkinson's Foundation, Parkinson's Disease, Support Groups, USF

‘Me Over PD ‘ Is Born In Tampa

gthelen

A Parkinson’s diagnosis is a shock. The lack of verified, actionable information easily available to People With Parkinson’s (Parkies in my vernacular) is even more shocking. This is especially true for highly localized treatment information.

A group of aggressive Tampa Parkies is changing that miserable equation. Dread disease, plus information chaos, no longer must equal existential terror.

Diane Cook, PD hero, pointed the way with her in-depth PD Self Actualization training in nine 2017 locales, including Tampa. Six Tampa graduates plus care partners, plus four Parkie recruits (and three care partners) have created a non-profit corporation that will deliver comprehensive, local-care guidance.

The back-story on this remarkable enterprise follows. (Full disclosure: I was a PD Self “facilitator” and convener of the Special Ops tribe managing this potential breakthrough in PD communicoation.)

Coby O’Brien is the senior advertising instructor at the Zimmerman School (advertising and mass communications) at the University of South Florida, Tampa campus. His father has PD.

Coby and I talked about how his senior advertising class could take on the challenge of remedying the “miserable equation” in the northern Tampa Bay region.

Thirty-plus students did in-depth research with extensive interviews of support groups, local Parkies and their Special Ops mentors.

Their proposal is to establish The Me Over PD project. The project’s digital and print products will reach newly diagnosed People With Parkinson’s with accurate, actionable, local information—little of which is available in most locales.

The project’s heart is a comprehensive database and a print brochure (The Roadmap or Guide) that directs newly-diagnosed Parkies to the database.

The Specials Ops “Tribe” will distribute the brochures at such possible locations as VA hospitals, drug stores, support/action groups, and agencies serving senior citizens, civic groups like Rotary, retirement communities, physician’s offices, The Y, and the Jewish Community Center.

Janelle Applequist, a Zimmerman School assistant professor, “owns” the database. Her graduate students will give it constant attention.

Me Over PD has filed for nonprofit incorporation and 501 C. 3 status. A Detroit donor has graciously contributed $5,000 for working capital.

That will be used to build out the website and print the guides. Launch target is the first quarter of 2018.

My Special Ops Tribe owes the USF students (and Coby O’Brian) an enormous debt of gratitude.

Thank you, guys. You are the best ad agency we could ask for.

 

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Parkinson's Disease, Research, Support Groups, Uncategorized, USF

More on living well with PD

gthelen

I spent time last week in virtual conversation with two very interesting people who have much to say about living well with Parkinson’s disease.

One is John Baumann, a motivational speaker now living in Sarasota. He has tamed his PD with a fierce exercise routine and steely determination.

The other is Diane Cook of Denver, a leading proponent of employing self-efficacy principles in better managing PD.

The two come from different backgrounds but converge at a common point.

Baumann, who will speak to the Sun City Center support group and guests Monday April 18, boils his message down to this:

“ Whatever hand life deals you (whether your fault or not), whatever life-changing adversity you have to endure, you still have some control over it, to not just live well, but live an AMAZING LIFE. It takes faith in yourself, discipline, determination, desire, intensity, inner strength. For me, it was having Parkinson’s disease in my 30’s; I am 54 today and have very few symptoms.”

The support group invites all Parkies and caregivers to attend this special event sponsored by the South Shore Coalition for Mental Health and Aging. The meeting is 1:30 – 3:00 p.m. at Sun Towers Retirement Community 101 Trinity Lakes Dr. Sun City Center. For additional information call Debbie Caneen at 813-892-2990

A National Parkinson Foundation grant springing from money raised at last year’s Moving Day Tampa Bay walk supports his talk.

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This year’s walk is Saturday at the University of South Florida Marshall Center starting at 9:00 a.m.
The event is for all ages and abilities. You will see a variety of movement activities, such as yoga, Rock Steady Boxing, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. For more information go to: http://www.MovingDayTampaBay.org

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Diane Cook’s explanation of how self-efficacy works in PD is quite similar to Baumann’s philosophy:

“Our belief in our own capacity to produce positive outcomes from our actions determines what we are able to do with the knowledge and skills we have. Our self-efficacy beliefs are more about what we think we can do with our skills than they are about what skills we have.

“Self efficacy is about having the confidence to be able to integrate our skills into a course of action and perform under a specific set of circumstances and challenges, such as managing chronic, progressive disease. Our self-belief influences our thought processes, emotional state, motivation, and patterns of behavior. It influences the challenges we undertake, the effort we expand and our perseverance in the face of difficulties.”

Cook offers a short, intriguing self-evaluation for you to take to measure how well you are managing your condition. It’s found here:

Click to access Self-Efficacy_Brochure_projectsparkorg_1.pdf

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In my reading this week, the web brought me some interesting observations from Australian Ben Basger. He is a lecturer and tutor in pharmacy practice, Faculty of Pharmacy, The University of Sydney. Here they are:

”The earliest pathological evidence of PD starts in the nervous system of the gut, medulla and olfactory bulb and spreads transneuronally to the midbrain (substantia nigra) and then the cortex. This may explain why non-motor symptoms of PD, such as constipation, hyposmia (reduced ability to smell) and rapid eye-movement sleep disorder often precede the typical motor symptoms, and why cognitive impairment is nearly always found in people with longstanding PD.

”These non-motor symptoms, together with fatigue and depression, may precede diagnosis by as much as 25 years.

“Advancing PD is further complicated by the loss of non-dopaminergic neurons, contributing to disturbances of gait, posture, autonomic nervous function, speech, cognitive function and sleep that may become unresponsive to dopamine. Dopamine replacement alone becomes inadequate.

”Although PD is a progressive disorder, deterioration is typically very slow, with considerable individual variability. The time to commence drug treatment for motor symptoms is when they are causing physical or psychological disability. It is a misconception that PD treatment is only effective for a limited time and should be deferred for as long as possible to reserve that benefit.

“All dopaminergic medications can cause nausea, gastrointestinal symptoms, hypotension, drowsiness, cognitive symptoms and impulse control disorders, but these are more common with dopamine agonists (e.g. pramipexole, ropinirole) than with levodopa/dopa decarboxylase inhibitors (LD/DDIs).

“For most patients with PD, motor fluctuations and dyskinesias (abnormal movements) are not disabling and can be adequately managed by manipulating the oral drug regimen.

”The incidence of dementia increases with duration of PD. It is characterized by fluctuating cognition and visual hallucinations. Cognitive impairment affects up to 75% of people who have had PD for at least 15 years, although the main risk factor is advancing age.”

Parkinson's Disease, Parkinson's exercise, Research, USF

South Tampa YMCA on the PD Move and a Fine Haus(er) Party

gthelen

South Tampa Y Explores PD Exercise Expansion

The South Tampa Family YMCA is sprinting towards creation of a second exercise program for people with Parkinson’s. The Y’s strong start with its cycling program has encouraged key leaders to explore more exercise programs aimed at PD.

The South Tampa Y’s stationary cycling program has exploded from 6 to 20 members in just over two months. Participant reviews are very strong and many expressed interest in additional new programs, such as the Rock Steady Boxing program in Largo. Current Hillsborough exercise programs aimed at PWP include yoga, tai chi, the Jewish Community Center’s new program and LSVT Big.

Y leaders Melissa Brockman and Nancy Belli have become enthusiasts for strenuous exercise programs for Parkies. They are urging other local YMCAs to start cycling programs. They are also talking with physical therapist Jason Kimber about the vigorous exercise program for PD that he designed. Kimber, who has relocated from South Florida to Tampa, wrote a guest blog on Shufflingeditor on February 2. Kimber has developed a program that includes elements similar to Rock Steady. Kimber’s program includes rigorous, whole body movement exercise that utilizes components of boxing, yoga, balance and strength training, as well as stretching. “Those take your body through atypical movement patterns that can help to retrain the brain,” he wrote.

Y leaders are looking for innovative program ideas. Kimber’s certainly appears to qualify. An added plus is the Y can bring it to market faster than a Rock Steady program.

USF’s Haus(er) Party

Dr. Robert Hauser and his staff at the USF Health Byrd Parkinson’s disease and movement disorders center threw one fine house party last Saturday for more than 200 persons with an interest in PD.

The day’s activities included presentations on DBS surgery, speech and language therapy, legal issues, and a physical therapy program known as LST Big.

The speakers covered ground familiar to readers of this blog. But I was intrigued with comments from Dr. Fernando Vale, a USF neurosurgeon. Among them:

• Still active USF surgeon Don Smith did the first DBS operation in the U.S. in 1993.
• 150,000 implants have been done since then.
• The 7-10 year surgery window. After an initial diagnosis it s deemed the sweet spot for DBS.
• Vale said the surgery “makes your life better but not ideal.”
• The surgery results in a reduction and the need for medications such as carbidopa-levodopa.
• There is “only a small chance that early surgery will delay progression of the disease.”
• Vail cities the next surgical step being about how to “repair damage and regenerate neurons.”

The lawyer who spoke, Jack M Rosenkranz was especially impressive about the legal safeguards Parkies should put in place. If you haven’t taken care of the estate planning guardianship and other issues, Rosenkranz would be a good one to consult.

Hauser closed the show with a wide-ranging review of current research efforts, his forte. As always, he urged his audience to volunteer in research projects.

While at heart a researcher, Hauser has been an important and public proponent of patient care initiatives and reforms.

Hauser was an early proponent and financial supporter of the Rock Steady Boxing program. He teamed with the Jewish Community center here to start their new exercise and caregiver program. He has supported my idea of a local helpline for Parkies.

Parkinson's Disease, Parkinson's exercise, USF

USF PD Seminar Saturday, plus Exercise and Apathy

gthelen

Interesting exercise program

My Rotary and PWP partner Jerry Iwerks brought an interesting exercise program to my attention courtesy of John Alexander, a Davis Phinney Foundation ambassador. The two spoke at the Fox Foundation event in Tampa Feb. 6.

Here’s what Alexander said in a follow-up email to Iwerks (the videos referenced are quite well done):

“The class that I have been participating in recently is called PWR, which is an acronym for Parkinson Wellness Recovery. The program began in Tucson, AZ at a neurofitness center specializing in early intervention and ongoing access to research-based therapy and fitness programming for individuals with PD.

“Florida Hospital in Central Florida became aware of the program and they scheduled a session to train an initial group of Physical Therapists to lead classes just about a year ago. A team of instructors came to Orlando last year…

“The following link shows a video describing the basic moves in the program. http://www.pwr4life.org/moves/approach/

“In addition to watching the primary video on this page, scroll down and click on any other hyperlink to a word in blue and you’ll get a good visual demonstration of the various components of the program. For example, here is a video of the Standing moves – https://www.youtube.com/watch?v=Y6Wtd13lwrc and here is one of the Sitting moves, https://www.youtube.com/watch?v=TDBVDCkkxV0

Reminder about USF PD Seminar Saturday

USF Parkinson’s Disease Educational Symposium ‪from 9 a.m. to 3 p.m. at the USF College of Public Health, ‪13201 Bruce B. Downs Blvd., Tampa. Free lunch provided. To get more information and to
Register by email; contact Jennifer Baker at jrbaker2@health.usf.edu.
My wife and I attended last year, and it was quite worthwhile.

Apathy and PD

I was enlightened by this interesting take on apathy in PDF by Dr.
Rachel Dolhun of the Fox Foundation.

“This time of year everyone and everything seems to be focused on exercise as part of a New Year’s resolution. It can be hard for anyone to get and stay motivated, but what if it seems nearly impossible? What if you have no get-up-and-go, or you’re simply not interested? You may be experiencing apathy.
“Apathy Is a Non-motor Symptom of Parkinson’s disease
“Apathy causes a general lack of motivation and interest, as well as a dampening of emotional expression. Hobbies and social activities may no longer bring enjoyment, and daily routines may require more energy. Basic tasks may be difficult to start and complete.
“Apathy can be misinterpreted as laziness, poor initiative or depression. And while it oftentimes is a feature of depression, apathy may occur on its own in Parkinson’s.
“This symptom affects up to 40 percent of people with Parkinson’s disease (PD) and is likely due, at least in part, to lack of the neurotransmitter (brain chemical) dopamine. It can impact anyone at any time in the course of his or her disease, but those with depression, anxiety or impaired cognition (memory and/or thinking abilities) are more susceptible. Older age and more severe motor symptoms also seem to put people at higher risk of developing apathy.
“Apathy Has Many Potential Consequences
“Apathy can have wide-ranging effects. For the individual experiencing it, apathy may lead to less physical activity (which can worsen already impaired mobility) and fewer social interactions (which could lead to depressive symptoms). Apathy has also been shown to correlate with a poorer adherence to medication regimens and/or response to treatment (as after deep brain stimulation surgery, for example).
“The friends and family of someone with apathy are also impacted — relationships may be stressed as loved ones take on more caregiving efforts.

“Treatment of Apathy Focuses on Behavioral Adjustments
“People with apathy usually don’t realize there is a problem. Instead, friends and family notice behavior or personality changes and bring these to the doctor’s attention. It’s important to do so because the physician can do tests and have you fill out questionnaires to figure out if the symptoms are due to apathy, depression and/or another medical condition.
“If the diagnosis of apathy is confirmed, lifestyle adjustments may be recommended:
Maintain a regular sleep and wake schedule. Go to bed and get out of bed at the same time each day. If you snore loudly, act out your dreams, or feel excessively sleepy during the day, ask your doctor if you need a sleep evaluation.
Create a schedule that incorporates physical, social and cognitive (memory and thinking) activities. List what you will do each day and at what time.
Set personal goals. Start small, with objectives you are confident you can achieve. As you reach these, you will set and accomplish bigger goals. Involve others at every step of this process — this will strengthen existing bonds and build new relationships.
Exercise. Physical activity is probably the last thing you want to do when you’re tired and unmotivated. It sounds counterintuitive, but exercise is actually helpful for apathy. Listen to your body and know your limits (i.e., stop if you feel pain, don’t push yourself to the point of exhaustion, etc.) but try to do something active every day — a short walk around the block or, if you have poor balance, stretching exercises on the floor. You might even want to look into group exercise classes — many are offered specifically for people with Parkinson’s or older adults.
“Medication options to treat apathy are, unfortunately, limited. Increasing dopamine replacement therapies (dopamine agonists and/or levodopa) is beneficial in some people but, of course, must be done carefully. Other drugs, including those used for dementia (such as rivastigmine, or Exelon) and depression (namely if the person is depressed) can be helpful in individual cases. All medications work best in conjunction with the above behavioral adjustments.
“More Research Needed on Apathy
“Clinical trials to test therapies for apathy are difficult to design and complete mainly because apathy can be hard to separate from other conditions. Additionally, the diagnosis of apathy relies on patients reporting their own symptoms and doctors doing tests to rule out other diseases (i.e., there is no blood or other test to make a specific diagnosis of apathy).
“Clinical trials to date have shown that both dopamine agonists (such as rotigotine, or Neupro) and non-dopaminergic medications (like rasagiline, or Azilect) can be helpful in some people. Additionally, small studies of non-pharmacologic interventions — exercise, cognitive behavioral therapy and repetitive transcranial magnetic stimulation (which delivers magnetic pulses to specific areas of the brain) — have shown an improvement in apathy. Further research is needed, though, to gain a better understanding of apathy and develop better treatments to target it.

Parkinson's Disease, Parkinson's exercise, Uncategorized, USF

Tampa Connector Update

gthelen

Tampa Bay Helpline

I wrote again about the need for a Tampa Bay Connector/Helpline/Hotline to answer very specific and granular questions about patient needs in PD. You will recognize some of the prose from earlier posts. It appeared Sunday Jan. 24 in the Tampa Tribune. Those of you with social media, please consider promoting it. Maybe we can create a small bandwagon in its favor and get institutional help. My bet is on Florida Hospital-Tampa, the former University Community Hospital, stepping up. A well-placed neurologist tipped me that something IS going to happen SOMEWHERE and to stay patient.


Exercise

Here’s another strong vote for hot, sweaty exercise as a key component of your exercise program.

I am feeling rejuvenated by my regimen of three days of Rock Steady Boxing and two days of spinning at the South Tampa Family Y. That spinning class needs and deserves more participants than it has now. See my earlier post for details.

Anxiety

Anxiety is a major complaint of Parkies, but little research is being dome on the topic. Here’s a valuable webinar on the topic.

http://event.netbriefings.com/event/pdeb/Archives/pdanxiety/register.html


Remember to RSVP Fox and Hauser Seminars

Tampa Bay hastwo strong PD seminars upcoming in February.: Fox/PDF on the sixth and Hauser on the 20th. Remember to sign up now to secure a spot.

http://partnersinparkinsons.org
Hauser 2016 seminar

Parkinson’s Disease

Educational Symposium

Presented by:

Robert A. Hauser, MD, MBA

Professor of Neurology, Molecular Pharmacology and Physiology

Director, USF Health Byrd Parkinson’s Disease and Movement Disorders Center of Excellence

SAVE THE DATE!

Saturday, February 20th, 2016

Time: 9:00 am- 3:00 pm

Location: University of South Florida

College of Public Health

13201 Bruce B. Downs

Tampa, FL 33612

Auditorium 1023 A-B

 

 

 

 

 

 

 

 

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Registration Form

 

Name: _________________________________   Number of People Attending: ___________

Address: _______________________________

_______________________________

Phone: _______________________   Email Address: _______________________________

 

 

 

For more information or to register by email, please email Jennifer Baker at jrbaker2@health.usf.edu. Register by mail, send to 4001 E. Fletcher Ave, 6th Floor, Tampa, FL 33613. Due to high call volume, phone registrations will not be accepted.
LUNCH WILL BE PROVIDED. SPACE IS LIMITED