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Living with EDS: Developing an Effective Self-Management Strategy to Maximize Your Health and Quality of Life. Sabrina M. Neeley, PhD, MPH Department of Community Health Boonshoft School of Medicine Wright State University, Dayton OH. Does EDS Ever Make You Feel Like This?. What is Management?. - PowerPoint PPT Presentation
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Sabrina M. Neeley, PhD, MPHDepartment of Community Health
Boonshoft School of MedicineWright State University, Dayton OH
Living with EDS: Developing an Effective Self-Management Strategy to
Maximize Your Health and Quality
of Life
+ Does EDS Ever Make You Feel Like This?
+ What is Management?“…the act of getting people
together to accomplish desired goals and objectives using
available resources efficiently and effectively”
-Wikipedia
+Self-Management of Chronic Health Conditions
MultidimensionalComplexHolisticA path, not a destination
Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.
+ Self-Management TasksTake care of your condition
Building a collaborative care team
Keeping recordsCarry out normal activitiesManage emotional changes
Source: Lorig, et al. 2006. Living a Healthy Life with Chronic Conditions. Bull Publishing Company.
+ Starting on the Path to Effective Self-Management
Write out your goals and desires (SMART)
List the hurdles - what, when, and how
Have a plan Start a journal Begin where you are now Take one step at a time
Learn from the setbacks Spend time "cleaning
house" Stop comparing yourself to
others Reward yourself
Source: Sparkpeople.com
+ Keys for Effective Self-Management
Holistic health and wellness perspective
Intrinsic motivationSelf-efficacyPositive support system
+
Source: World Health Organization
+ WellnessWellness is the dynamic process of
becoming aware of, taking responsibility for, and making choices that directly contribute to one's well-being.
Source: Medical Wellness Center, University of Miami
+ Intrinsic MotivationInternal, rather than externalComes from me, not othersOften goal-oriented, and reinforced by goal achievement
Often diminished by increased extrinsic motivation
Enjoyable, uplifting, energizing
+ Self-Efficacy = ConfidenceLearning about EDSKnowing what questions to ask a doctor
Making the most of your doctor visitsAdjusting physical activitiesAdjusting dietMaking accommodations to life activities
+ Building and Maintaining an Effective Support System
Family, friends, co-workers, neighbors, other EDS patients, medical and health professionals
“Independence is being able to get other people to help you.”
Communicate effectivelyBe specific in your requestsDon’t be afraid to fire
+ Julia Fox GarrisonDon’t Leave Me This Way
“HOPE IS A POWERFUL MOTIVATOR. Hope is always what gets you to the next goal; once achieved, there’s a goal after that. Anyone who tries to kill the hope in your heart is the one you have to be prepared to battle.”
“YOU OWN YOUR CONDITION – and you are generously sharing it with everyone close to you.”
“We’re only victims if we choose to let ourselves be consumed by something. I’m a survivor who continues to thrive.”
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If not now, when?
+
Questions?
+ References Lorig, et al. 2006. Living a Healthy Life with Chronic
Conditions. Bull Publishing Company. Medical Wellness Center, University of Miami.
http://wellness.med.miami.edu/ http://www.sparkpeople.com
Stanford University School of Medicine. Chronic Disease Self-Management Program. http://patienteducation.stanford.edu/programs/cdsmp.html
World Health Organization. http://www.who.int/en/