Melissa Reynolds talks Yoga. With chronic pain and fatigue, there’s such a variation. Some people are always at high levels of pain. Some people vary. There are various stages within fibromyalgia and chronic pain and chronic fatigue. Plus, you have other things going on. Some people also have arthritis where their chronic pain comes from. Or there are other complexities. You can’t say, “this is how you do yoga for chronic pain.” Key is letting people see that they have choices, so there’s never a push. They don’t need to be aiming for anything. They need to listen to their body and do what jells with their body. What feels nice? For too long, we’ve been told you have to push yourself. You’ve got to get to this point. This is your goal. I’m sick of external goals I want to work on my own goals.
Best health builds on trust – trust in people, institutions, information, and solutions. I trust my primary care doc. I trust my chiropractor. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. Trust doesn’t mean blind following. Rather trust leads to more control or feeling more in control. I need trust when I’m in a crisis and can’t think clearly. I listen to my immediate family and my two lead docs (in that order). I’m likely to do what they recommend. Trust is for when I need to decide but can’t or don’t want to. Trust is for times of uncertainty.
My compatriot, Geri Lynn Baumblatt, consults and advocates on the overlapping worlds of employees, family caregivers, employers, and support, especially in nursing. In short, bread winners also caring for family and friends with acute and chronic illnesses and disabilities. I picture these overlapping worlds as balloons mashing up against each other trying not to burst. If you’re a nurse, an employer, a boss, or a caregiving staff member, this chat about the Difference Collaborative is for you.
Laura Marcial talks with us about making the tech sausage of Clinical Decision Support: Guidelines, evidence, rules, knowledge engineers. Clinical decision-making still depends on human trust time, talk, control, and connection. Read More
As a person who owns my journey, my learning journey, in this case, I explore the options, the resources that are available to me. Then I direct myself to make the right choices and learn what I need to learn. At the same time, it’s learning by doing. That’s a very important part because we can learn a lot of things in theory. But can I communicate that knowledge? Does it bring us benefit? It doesn’t help us with our life unless we put this knowledge to work. So, I believe in learning by doing and learning and exploration. So, again, we learn from other people. We learn by doing our work and continuing to explore options so we can improve what we know, and the work we do.
Careful what you wish for. Health equity and participatory medicine depend on the widespread meaningful use of patient family advisors. The trickle of such advisors should be a stream. Unfortunately, even if the supply could meet demand, health care administrators, researchers, entrepreneurs lack skill in making good use of patient family advisors. Libby Hoy leads Patient Family-Centered Care Partners, a small organization with a large vision for improving the quality, safety, and experience of healthcare through the development of authentic partnerships from the bedside caregiving relationship to the boardroom.
Michael Mittelman received three kidneys via transplant, his current kidney from a living donor, his mother. He identifies as an advocate for organ donation, specifically, living organ donors. He also works across disease areas to help companies understand and involve patients. He cares deeply about access and equity in healthcare. For this episode, I’m going to test calling our work as advocates, activists, and partners, an Independent Community Benefit Practice.
Patient expert, co-investigator, patient partner, subject matter expert, patient advocate, patient/caregiver activist. Many labels. Whatever you call us, invite those of us with different and unique experience, skills, and circumstances to sit at decision-making tables. Then treat us as equals and respect us. Then do something with what we offer.
Wow, four strokes by age 39. Quite a record for a sportswoman. A story about trust. First, no benefit of the doubt by the first diagnosing person thinking that Lisa was a drugged-out college student. Then Lisa’s trust in herself as a patient expert. Experience and engagement reinforce each other and builds confidence. No mystery that I appreciate I’m “good at naps.” So far, I don’t know how else to introduce young people to choices about health, wellness, or illness other than including them when someone in their lives is actively making such choices. Lead by example. Also, no mystery that I appreciate Lisa’s emphasis on telling her story. I’m delighted to be a channel.