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Returning to Function. An Ongoing Process. Ada Glustein. Member of Pain BC’s Expert Patient Advisory Committee . April 30, 2014. The Merry-go-Round . Doctor, Doctor! Can you help me? Doesn’t anybody have a pill to take it all away? Physio? Massage? Chiropractor? Acupuncture?.
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Returning to Function An Ongoing Process
Ada Glustein Member of Pain BC’s Expert Patient Advisory Committee April 30, 2014
The Merry-go-Round Doctor, Doctor! Can you help me? Doesn’t anybody have a pill to take it all away? Physio? Massage? Chiropractor? Acupuncture?
THE PATH TO FUNCTION The Path Back to Function: Not the Yellow Brick Road!
From This …. Gee, I’m good at acceptance! I can sit and knit!
To This! Still working on it – an ongoing, ever-changing journey With many useful tools along the way
A family doctor who took me seriously Medication trials Referrals Supportive since 2001
Writing wrote losses, can’ts, cans, dialogues, journal, story, affirmations gained awareness, expressed my grief, began to heal‘MY WELL-BEING IN LIFE DOESN’T DEPEND UPON BEING PAIN FREE’
Meditation learned body awareness, “big sky view,” spaciousness changed view of pain; to see it as it was helped accept reality saw connection between CBT and Eastern thought; thoughts and beliefs matter
Body Scan & Breathing first learned from Jon Kabat-Zinn CD’s; later Neil Pearson’s learned calming breath reduced pain experience first awareness of my “good” side; gratitude for body’s support
MBSR program started by JK-Zinn -- attended an 8-week class- basic intro to meditation, mindfulness, breath and body - reduced pain while practising – see it in Toolbox!
Readings - learned a lot about my own condition - learned a wide variety of ways to deal with chronic pain- later found many of the same readings in Toolbox, plus more- as always, fascinated by the brain, neuroplasticity, changing pain
Self-Management Programs attended St. Paul’s 8-wk. self-management program , available then most valuable for me was occupational therapy could DO more by altering position, pacing, placing things differently
Online Research a) found Diane Gromela, SFU, studying virtual reality and chronic pain volunteered as study participant, at a patient meeting, in a grad student’s movie short fascinated with how the brain can be tricked, soothed, make good or bad decisions
Online Research b) found CPSMP, who were looking for volunteers signed up for training and co-leading classes helped me by helping others, reinforced my own self-management
Online Research c) found Pain BC and Toolbox in 2011 – everything in one place by respected authorities joined immediately, volunteered - patients valued & empowered wrote pain story, was interviewed on Blog Talk radio, spoke to volunteers at Crisis Centre – returning to function in community watched webinars on every available topic – follow latest research
Online Research d) formed support group with co-leader as follow-up to CPSMP group members wanted ongoing support and education more time for connections/members helping others/place of acceptance and understanding for all under umbrella and support of People in Pain Network (PIPN)
Partnering with Health Care Professionals found doctors , physio and volunteer positions where I feel I’m part of the team, part of my own care, have a voice and some choice works for me when time is made to talk, ask, listen, and make decisions together
Acceptance, the Double-Edged Sword acceptance is first tool in Toolkit, mentioned in Pain BC’s Toolbox originated with Pete Moore in England, rights given to PIPN in Canada learned acceptance early on in my journey and learned it well
The Other Edge of the Sword Neil Pearson, yoga for pain, gentle activity, guru for return to function excellent resources in Toolbox, online, webinars, speaking engagements had me look at “acceptance” of physical pain as possible “avoidance” of return to physical function, with possible consequence of muscle atrophy
The Path Continues I keep starting where I am and move a little from this point I’ve used many steps and tools – feel fulfilled, can handle pain most of the time and am a confident, contributing member of community Still working on physical function – attend regular exercise classes, sometimes folkdance, trying now to improve my walking and back strength Work with physio on a regular basis, moving forward
Family Interactions & What Gives Pleasure social connections important, feeling needed, useful and loved 183 things that bring pleasure (in Toolbox); I still like to knit pleasures bring oxytocin and endorphins, lessening pain see myself as whole person, not broken, functioning in the world