Panelists are discussing deconditioning. Patients became unwell using the deconditioning model of rehabilitation. Thinking of a dysregulation model may be more helpful per OT Sue Pemberton - work on regulating sleep, eating, blood pressure, autonomic function, etc. Avoid PESE
Francis McGuire makes the point that functional tests may be normal (sit to stand, walk tests, etc). It’s important to look at how the patient felt in the day or two after (i.e monitor for PESE). With patients who are dysregulated, the disability is episodic. #LCPForum
What role does your identity have in your care? @DrMarciaPT - if I wasn’t a PT in the system, I wouldn’t have understood how I was being seen and treated in the medical community.
@chiluvs1 I had to speak up for all those out there who didn’t have the ability to do so. What would happen if I stay quiet? Something I’m saying will create change for somebody.
@AshantiRN I thought I was immune to medical gaslighting as a nurse. My color and my sex trumped that. “Don’t gaslight yourself…don’t second guess your experience because a doctor told you so.”
What does disability mean to you? @haziethompson - 1) The physical things that affect your ability and autonomy. 2) There’s the bigger scope used to exclude people from public life, a diminished capacity makes you unable to participate in society.
@chiluvs1 Disability means restricted access. Becoming a teacher gave access to healthcare, government, politics. I was accepted as a Black Woman. Then I learned as a disabled woman I had restricted access. Doctors restricted my care as a Black and disabled woman.
@ninachigbo in the African world, you are not allowed to say you can’t do something. As a Black Woman, mother, etc. you are expected care for other people. There is no acceptance for invisible illness. You must deal with it.
According to @CenterRes, pacing is doing as much activity as possible without causing an increase in symptom.
Per @sunsopeningband it involves staying within an envelope of one’s ability. It’s a balance of resting with managing day-to-day activities. Much of society isn’t setup for pacing, however.
Per @julialmv , using a wearable was the most beneficial thing to me! I thought I was resting and pacing, but the data showed otherwise and I needed to scale back.
Tomorrow! We begin the Long COVID Physiotherapy International Forum #LCPForum! Before we get started in 1 day, we want to thank 🌟EVERYBODY🌟 supporting, involved and working behind the scenes. Thank you 🙏🏻 #LongCOVID#FBLC#GlobalPT