"Through Our Eyes" Poster Information

"THROUGH OUR EYES" PATIENT SPEAKERS PANEL EFFECTIVELY EDUCATES PEERS, PUBLIC & HEALTH CARE PROFESSIONALS ON DAILY MOTOR & COGNITIVE CHALLENGES OF PARKINSON'S 

Leonore Gordon, LCSW, New York University;  David Spierer, EdD, Long Island University, NY, USA

OBJECTIVES

  • Raise awareness of Allied Health Care Community of need to include "The Patient Voice" in training graduate students who will be working with PD community
  • Spur PWP community to create local  Speakers Panels comprised of PWP’S & Care Partners who are advocates, educators and health-Care professionals
  • Raise public awareness about PD’s  diminished cognition issues (Executive Functions), &  teach compensatory coping strategies to PWP’s, families, & treatment teams
  • Partner with PD org.’s and patient care programs to empower retired PWP’s by utilising their multi-faceted skill-sets

HOW HAVE WE ACCOMPLISHED THIS IN NEW YORK CITY?

  • Request inclusion of PWPs as speakers & planners in PD-related events & conferenceS















  • Creation of “THROUGH OUR EYES” Speakers Panel, drawing from local PWP pool of educators, advocates & HC Professionals
  • Presentations by PWP Speakers Offered to our own HC providers for graduate students at their academic training institutions
  • Creation & Distribution of educational packets about living w/PD, written by PWP’s
  • Participation in Q & A Sessions with PWP’s included in Dance for PD teacher-trainings
  • Staging Our Own Conferences (Cyndy Gilbertson: “PD & Complementary Medicine”  NYC, 2007
  • “Empowerment Strategies” presentations addressing Executive Function challenges offered at PWPs’ & Care Partners’ support

Gauging Success: Surveyed those who attended trainings led by PWPs (as participants or learners). 

Did you feel  you learned something from people with Parkinson’s that you had not learned from previous lectures, conferences or reading materials?

“Although it is impossible to know how it feels to have PD, I have gotten my best understanding from PWP’S.”

“ ‘Dance for PD” Q&A…reminded me how important it is to treat PWP’s as the intelligent, independent people they are.”

If working with PWP’s, did you feel more interest in working with this population after meeting with the PWP’’s?

Would you recommend that training institutions working with  PWP’s Incorporate these kinds of Q&A sessions into the training process?  

PWP’s are the best source of info for us Health Care Professionals on symptoms and treatment. They are the vital team member within the Multidisciplinary team.”

“While a lot of information can be received through textboooks and research, it is extremely helpful to get first-hand knowledge from people living with PD…”

WHAT UNIQUE VALUE DID YOU FEEL WAS  GAINED  LEARNING FROM PWP’S?”

 “Meeting with PWP s helps put a human face on PWP’S and the issues they face. Humanizing PD helps ‘Dance for PD’  teachers remember we are all people, some of us just have different needs.”

 “I feel so blessed that I was given the opportunity to work with and learn from such amazing people and to get a glimpse into what it is like to live with Parkinson's  disease. “

“One should not confuse the body movements  and other symptoms of PWP’S with their sharp intelligence, creativity and capability.”

LEARNING ABOUT DIMINISHED EXECUTIVE FUNCTIONS FROM PWP’S…

”…helps me design classes and dance sequences that will…be useful to my participants with Parkinson’s.”

“I learned that PD can present with a wide range of symptoms, not just the tremors and freezing that most people are aware of.”


“…helped me to be less frustrated and to recognize that these things were not being done intentionally.”

“Learning about executive function deficiency and cognitive problems has come just when I’m experiencing these things, and it is so helpful to know about it.”



DO I HAVE ALZHEIMER’S? Unlikely!

But as PD progresses, EXECUTIVE FUNCTION PROBLEMS do appear, looking like ADD (Attention Deficit Disorder),ie.short-term-memory impairment; difficulty completing & staying focused on tasks; distractibility; troubles with multi-tasking, prioritizing, & decision-making.
CREATIVE SOLUTIONS CAN HELP!
               For  more, see
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