Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. Read More
I’m Disabled. Who labels themselves? Feels like crap. I applied for disability. Needed a psychological evaluation. Spent an hour with a psychologist. I spent that hour telling her about the effect MS has had on my life. MS is seriously annoying…. Came out feeling terrible. “Oh man, I’m disabled. My life has been so disrupted. I can’t do what I once did. Woe is me.” Lost my pathological optimism for a day. I’ve had to train myself over the years to feel sorry for myself. “OK 5 min, feel sorry.” Enough of that. It’s too boring. When I feel sorry for myself my symptoms are worse. Direct correlation.
Lots of people have it worse than me, much worse. Read More
The metaphor, Personal Health Journey, works for me. We’re heading somewhere for health whether on purpose or not. We’re never actually there. It’s continual – until it isn’t. Sometimes we have a map, sometimes we don’t. Map or not, we’re still heading somewhere: work, the grocery store, our in-laws, the beach. There’s always decisions to make on a journey: stop for gas, rest, sight see, go left, go right? Same with the health journey.
The journey is different if we’re well, acutely ill, chronically ill or dying. Our aspirations are different. When we’re well we either don’t think about our health or we want to stay well. When we’re acutely ill (now we’re a patient), we want to get over it. When we’re chronically ill we want to live the best life possible. When we’re dying we want to live as long as possible or live as best as possible OR both. The journey is different, too. For the well it’s Inertia or Select Personal Health Goals-> Act and Track->Deal with symptoms when they arise. For the acutely ill it’s Symptom->Diagnosis->Treatment->Recovery->Back to Well or on to Chronically Ill (thanks to John Mitchell at Applied Marketing Science). For the chronically ill it’s Disbelief->Grief->Get help (care and treatment)->Recalibrate->Maintain->Give back->Relapse (and back again). Read More
I’m celebrating that I’ve finally learned an effective stretch for my hamstrings. Thigh and calf Charley horses and foot cramps have disrupted my days. My low back’s been hurting for several months caused by this tightening and cramping of my quads, hamstrings, calves, and feet. It’s become hard to sit for more than 15 minutes. I bought a standing desk, next to my sitting desk. I’m paying attention to ergonomics, learning to type (I’ve always been a hunt and peck kind of guy). My chiropractor and massage therapist attribute these muscle cramps to changes in my walking caused by the MS and wearing an ankle/foot orthotic. The Charley horses are the worst. I’m learning that there’s nothing straightforward about stretching. I’ve been stretching for months with very short-term relief. All of a sudden on a road trip this week, stopping at every rest stop to stretch, it kicked in! It’s not about stretching, it’s about relaxing. Standing tall, pelvic tilt, bending at the waist, relaxing. A meditation. I can feel the hamstrings and calves responding. Exciting! Read More
If I was queen for a day, with a genie, and a clean slate…
The practice management staff of XYZ clinic routinely runs a program of all their patients’ data to predict those at risk for needing urgent care or hospitalization. The practice contacts Alice (one of many such patients or caregivers) pointing them to their practice portal or speaks with her on the phone with the module open to them. A module in the portal or caller from the practice asks Alice to confirm the accuracy of the data and allows or asks her to correct or fill in information used in the screening program. Alice can type or speak her responses. The module or caller asks questions about the current status of her treatment plan (activity, diet, meds, appointments, etc.), her current abilities and symptoms, and asks her if she has questions. Depending on the answers, Alice may be instructed to go to an Emergency Room. If she needs Urgent Care, another module opens up to a clinician immediately available by video who has access to the same data as Alice and her answers to the clarifying questions. They discuss her status, make decisions, order tests and meds as needed and update her treatment plan. If she needs neither emergent or urgent care, her next appointment at the clinic is confirmed or scheduled and Alice is reminded of her treatment plan and schedule and pointed to activities and community resources that may be of value in the meantime. When Alice arrives at the clinic, her clinician views the entries in the portal module with her and they discuss her status, make decisions, and update her treatment plan. For any of the scenarios, Alice’s questions are answered live or via the portal. Costs and out-of-pocket expenses are included. Read More
Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them. 50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More
Pissed off only begins to describe my reaction to the passage of WealthCare, TrumpCare, RyanCare. How about outraged, furious, despondent, bewildered. My frame has always been: Everyone has a right to basic health care. How can we align the forces of this great and diverse country for best health for all? Read More
I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More
I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests. My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. Read More
I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Read More