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Coping with GSD: What's the Secret
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Coping with GSD: What's the Secret

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Presentation by Lisa Merla, Ph.D., M.P.E. …

Presentation by Lisa Merla, Ph.D., M.P.E.
University of Florida
Department of Psychiatry

Outlines the daily challenges of GSD and ways to adaptively cope with them.

Presented at the 2010 GSD Conference in Orlando Florida

see www.GSDLife.org for more info...

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Transcript

  • 1. COPING WITH GSD WHAT’S THE SECRET? Lisa Merlo, Ph.D., M.P.E. University of Florida Department of Psychiatry
  • 2. Challenges Associated with GSD
    • Feeling left out/ Missing events
    • No sugar, dairy, fruit, gum
    • Decreased energy/Getting tired quickly/Not keeping up
    • Feeling bad, sad, or mad
    • Having to drink cornstarch
    • Treatments, pills, shots
    • Having to explain GSD to others/answer lots of questions
    • Overall health risks
    • Low sugar ruining whole day
    • Never get a break from it
    • Inconvenience/mess of carrying cornstarch everywhere
    • Unfashionable alarm watches
    • Waking up in the middle of the night
    • Going to the hospital
    • Treatment team is far away
    • Hard to plan meals
    • Stigma
  • 3. Challenges Associated with GSD
    • Feeling left out/ Missing events
    • No sugar, dairy, fruit, gum
    • Decreased energy/Getting tired quickly/Not keeping up
    • Feeling bad, sad, or mad
    • Having to drink cornstarch
    • Treatments, pills, shots
    • Having to explain GSD to others/answer lots of questions
    • Overall health risks
    • Low sugar ruining whole day
    • Never get a break from it
    • Inconvenience/mess of carrying cornstarch everywhere
    • Unfashionable alarm watches
    • Waking up in the middle of the night
    • Going to the hospital
    • Treatment team is far away
    • Hard to plan meals
    • Stigma
  • 4. Challenges (cont.)
    • Feeling full / Having to eat, even when not hungry
    • Eating whole grains
    • Difficulty in social situations
    • Having to plan ahead/prepare for everything
    • Interrupting activities
    • Checking sugar throughout day
    • Unable to eat much at one time
    • Feeling like an outsider
    • Having to be extra careful playing sports
    • People staring
    • Having to get up early
    • Traveling with cornstarch
    • Takes a lot of time/work
    • Eating 7 meals a day
    • Getting really sick
    • Having to think about every single thing you eat
    • Being pulled out of class
    • Difficulty concentrating
    • G tube
  • 5. Challenges (cont.)
    • Feeling full / Having to eat, even when not hungry
    • Eating whole grains
    • Difficulty in social situations
    • Having to plan ahead/prepare for everything
    • Interrupting activities
    • Checking sugar throughout day
    • Unable to eat much at one time
    • Feeling like an outsider
    • Having to be extra careful playing sports
    • People staring
    • Having to get up early
    • Traveling with cornstarch
    • Takes a lot of time/work
    • Eating 7 meals a day
    • Getting really sick
    • Having to think about every single thing you eat
    • Being pulled out of class
    • Difficulty concentrating
    • G tube
  • 6. Take-Home Messages:
    • Life with GSD can be tough sometimes!
    • Patients, parents, siblings, other relatives, and friends are ALL affected
    • Coping is important for everyone!
  • 7. WHY IS COPING IMPORTANT?
  • 8. Medical Traumatic Stress
    • A set of psychological and physiological responses of patients and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences (NCTSN, 2003)
    • The experience of medical traumatic stress is not unique to GSD patients/families. It is seen across all chronic and severe conditions .
  • 9. Distress and Impairment
    • Patients and families who experience medical traumatic stress are more likely to experience:
      • Anxiety
      • Depression
      • Hyperarousal
      • Re-experiencing
      • Behavior problems
      • Difficulty at school
      • Etc.
    • These are NORMAL responses to abnormal experiences
  • 10. The Good News
    • Adaptive coping can help patients and families manage these stressors more effectively
    • Professionals (e.g., pediatric psychologists, health psychologists) can help patients and families who struggle
      • They understand how normal, functioning
      • families can benefit from learning new
      • coping skills and strategies
  • 11. WHEN IS COPING NEEDED?
  • 12. Potentially Traumatic Events
    • Many experiences can be experienced as traumatic by patients with GSD and their families:
      • Point of diagnosis
      • Early (acute), ongoing, and evolving experiences that unfold with physical sequelae of illness and treatment
      • Longer term experiences (when acute treatment phase has ended)
    • The same objective event may not be equally traumatic to all individuals!!
  • 13. SO WHAT IS COPING?
  • 14. IDEAS?
    • “ a way of dealing with a situation that does not seem to have immediate resolution”
    • “ the ability to create a dividing line between a problem and normal daily functioning”
    • “ learning how to be patient with a situation that is beyond your control”
    • “ allowing yourself to be in a state of mind that allows you to live somewhat normally when you experience a crisis”
  • 15. Scientific Definition
    • Constantly changing cognitive and behavioral efforts to manage specific demands that are appraised as taxing or exceeding personal resources (Lazarus, 1984)
    • In other words:
    • Something that you think or do to make yourself feel better when you are struggling or upset
  • 16. Types of Coping
    • Active vs. Passive
    • Problem-focused vs. Emotion-focused
    • Seeking Support vs. Avoidance
  • 17. Active vs. Passive Coping
    • Active Coping:
      • DOING something to make yourself feel better
    • Passive Coping:
      • WAITING (patiently?) until things get better or until someone or something helps you
  • 18. Problem-focused v. Emotion-focused
    • Problem-focused:
      • Looking for a solution or a way to CHANGE the situation
    • Emotion-focused:
      • Finding different ways to think or feel about a situation
  • 19. Avoidant Coping vs. Support-seeking
    • Avoidant Coping:
      • Ignoring, denying, or trying not to think about the problem
    • Support-Seeking:
      • Turning to family, friends, medical team, etc. for help (emotional and/or instrumental)
  • 20. Adaptive Coping Strategies
    • Humor
    • Acceptance
    • Religion/Spirituality/ Prayer
    • Using active, problem-solving coping when there is something that can be done
    • Using emotion-focused coping when the stressor is uncontrollable
    • Expressing emotions to supportive people
    • Optimism
    • Acknowledging benefits/opportunities for growth
    • Seeking instrumental support from others
    • Temporary distraction (e.g., music, reading, games)
  • 21. Adaptive Coping Strategies (cont.)
    • Being strong
    • Celebrating your health when feeling well
    • Thinking other thoughts or think about things differently
    • Working harder
    • Using medical interventions (dextrose water, glucose tabs, lay down to rest– extra cornstarch before activity)
    • Punching a pillow
    • Sticking to a schedule
    • Preparing in advance
    • Thinking about people who are worse off
    • Journaling
    • Focusing on the positives
  • 22. Less Adaptive Coping
    • Substance abuse
    • “ Bottling up” or suppressing emotions till they are unmanageable
    • Self-blame
    • Trying to deny the problem exists for an extended period of time
    • Feeling sorry for yourself
    • Taking your frustration out on others
  • 23. Some “Positives” of GSD
    • IN YOUR OWN WORDS:
    • Getting special treatment
    • Going on exciting trips
    • Free stuff
    • Not eating sugar keeps you healthier
    • Learning perseverance
    • Having great doctors who care
    • Being able to eat/drink in front of others whenever you want
    • Having your “issue” out on the table
    • Good excuse to resist peer pressure
    • Learning to be more responsible
    • Being stronger
  • 24. THANK YOU! lmerlo@ufl.edu