Month: June 2017

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More Tampa Bay Fitness and Education Options

gthelen

USF Health and the Jewish Community Center are expanding the reach—but lowering the cost—of their PD exercise programs. Classes include Tai Chi, Stretch/Strengthen, Nia, Water and Movement, and Caregivers Support group. (Nia combines dance, martial arts and mindfulness.)
Classes are offered at both JCC campuses: Citrus Park, 13009 Community Campus Drive, and South Tampa, 522 N. Howard Ave. The cost to participate in all the classes is $20 a month or $100 for six months. Further, registration provides a PD Wellness membership at the JCC. The USF/JCC program is aided by the Edmond J. Safra National Parkinson’s Wellness Initiative. To learn more or register for classes, call Crista Ellis at 813-396–0765 or email PDwellnessinitiative@gmail.com.
 
An intriguing educational event is at the JCC Howard Avenue location June 11 from 2:00 to 4:30. The subject is “Taboo Topics of Parkinson’s Disease: Physical Intimacy & The Green Alternative.” Loosely translated that’s, marijuana and sex. Speakers are Dr. Sherry Leib and Dr. Selim Benbadis. Call Crista Ellis at 813-396-0765 to RSVP.
 
My PDF SELF buddies sing the praises of a recent speaker at their program: USF’s Dr. Angela Hill. She’s speaking June 28 at the Byrd Institute, 4001E. Fowler Ave. Atrium room. The topic is “Facts and Fiction About Traditional and Contemporary Treatment Approaches for Parkinson’s Disease.” Prescription, Herbal & Vitamin Approaches. Contact again is Crista Ellis, 813-396-0765.
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Fed-up Parkies Take Action

gthelen
The following post appears on http://www.parkinsonalliance.org/weblog/
Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.
We “Parkies” never forget the date that we heard the words.
“You have Parkinson’s disease.  Progressive and incurable. But it is treatable.”
Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.
No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.
Lesson learned:
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Good luck.
That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.
University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.
PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.
Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence.  You can live well despite PD.
Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.
I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.
Our challenge is to find newly diagnosed Parkies and connect.
We are committed. We will find our way. We have so far.
– Thank for Gil, for your Parkinson’s voice.  For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.