Grateful for our blessed life together. Grateful for our home with the footstep rhythm of family upstairs. Grateful that our means are enough to live within. Grateful for the ability to do good work. With so much suffering in the world, grateful for those working to make our lives and others’ lives better. We share 7% of our gross income each year. We give to Planned Parenthood, Amnesty USA, WBUR, WNYC, WGBH, Radiotopia (check out Ear Hustle), the National Partnership for Women and Families, Arlington Food Pantry, The Greater Boston Food Bank, the Free Wheelchair Mission, the Housing Corporation of Arlington, Partners in Health, Doctors Without Borders, the Museum of Fine Arts, Project Sleep, the Pann Mass Challenge, Wikimedia Foundation, Regina Holiday’s Cinderblocks and the Walking Gallery, Mothers Out Front, the Hispanic Federation, the Arlington Library Foundation, the Harlem Jazz Museum, and several others. We thank them for their inspired and inspiring work. We are one.
I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I’m very interested in research, but I’m also a skeptic: How does this study help me? How does it help my family? How does it help my clinician partners? How does it help the people who support and care for us? We are the people at the center of care. Just because we found out that something might work in a lab, does that mean will it work for us? Read More
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
My mother bought me a beautiful handmade brocade vest when I lost 45 pounds. It’s my favorite. I can’t button it now. Not even close. I haven’t worn it in several years. My personal health goal: Lose weight and keep it off. It may be the most common American health goal. American’s spent about $60 billion on weight loss in 2013. Every year, 45 million Americans go on a diet. So, I’ve learned that I can lose weight, but not keep it off. To attain my goal I need to adjust my health plan.
What is adjusting? Set a goal, try something, be dissatisfied with the result (learn), then adjust. Adjusting means changing a habit. In my experience as a student of individual and organization health, changing a habit is hard, very hard. I think of changing habits like watching water flow – water flows in the path of least resistance, makes a channel, and gets deeper. We mostly like and value those channels. They’re comfortable until they flood or become polluted. Read More
One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices. Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.
Learning what works is an experiment.
A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care) Most don’t. Read More
I am on a health journey, trying to meet my health goals with the support of a care team. Who’s doing what? When are they doing it? That’s my plan of care for me.
Most people don’t normally think in terms of a plan of care for themselves. Let’s peek into their minds:
Plan of Care – What’s Going on in Their Minds?
Patient: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still be able to take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did the med (the procedure, the diet…) work? Did it help me? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? What did I prescribe before? Did he do it, did he take it? Will he tell me the truth? If he did it, did it work? What do the tests tell me? What should I prescribe next? What are other doctors doing (ordering)? Has he been to the hospital since I saw him last?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best. 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
I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)
This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.
I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped). e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.” Read More
OMG, I’m upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I’m adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help You? For topics we care about and related resources. I’m determined to create it myself – much like my wife and I built a house – seriously ignorant, reading instructions, tutoring, advice, and making significant mistakes while putting one foot in front of the other persistently. Learning something completely new is a frustrating gas. Frustrating until you learn a bare minimum of the language, get the right tools, building a support team, and finding the growing mindset of I can do this!? Frustrating when you mess up big time – like a couple of days ago when I unknowingly loaded 13 sample posts with my new theme and they went out to all of you looking like spam. (Thanks for letting me know and hanging in there with me.) A gas when you stumble upon or are pointed toward a solution, when you can find the solution a second time, when you can start to see the creation, and when someone else appreciates it. Gosh, this sounds like living or supporting someone with a chronic illness, living in another country or community, playing music, going to school, or starting a new job. Read More