I want to be a better CEO of my health and health team. Better at learning, managing, leading, and deciding. Most of us are only fair at any of it. Few are good at all of it. And our lives depend on them all. Let’s explore this further together in future podcasts. I encourage you to share your questions and thoughts with me.
Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting. Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.
Mallory Smith lived and died with Cystic Fibrosis. Mallory wrote, “Salt in My Soul: An Unfinished Life.” In this fifteen episode of Young Adults with Complex Conditions, I speak with mother, Diane. Mallory was Captain of her own ship, lived HAPPY, and shares many lessons with us. Heart-warming affirmation! Tragic, tragic, tragic!
Best health is living at peak performance no matter our biology, abilities, or our circumstances. Reaching best physical, mental, and spiritual health is complex, frustrating, frightening, and oh so rewarding. I’ve worn many hats during my life in healthcare. I’m a person with Multiple Sclerosis, I’m a nurse who’s worked in the community, in hospitals, in managed care, and behavioral health. I’ve been care partner to several family member’s end-of-life journeys. I’m a musician, an Opa, a storyteller, and a patient/caregiver activist. Wearing all these hats, I know a little bit about a lot of healthcare and a lot about a little bit of healthcare. I interpret the Tower of Babel so You can drive your own train and achieve your personal and community health goals. In this podcast, I will invite passionate, skilled people to muse with me about life, death, advocacy, research, data, healthcare delivery, anything that piques my interest. Let’s make some sense of all this!
Episode Notes
Please find me at https://www.health-hats.com/. or subscribe to my podcast on iTunes or wherever you get your podcasts.
About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen and I have worn many hats in my 40+ years in healthcare as a patient, caregiver, nurse, informaticist, and leader. Everyone wears many hats, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this.
My guests and I reflect on what works for people, professionals, and communities in their journeys toward best health: learning, making choices, communicating, and adjusting to realities. We can range from personal, clinical, technical, entrepreneurial, organizational, to whatever interests me at the moment. Join the ride!
Readers of Health Hats, the Blog, we will publish a Podcast in at least two of each month’s weekly posts. To subscribe go to the blog https://www.health-hats.com/
Hey there, this is Danny. Best health is living at peak performance no matter our biology, abilities, or our circumstances. Reaching best physical, mental, and spiritual health is complex, frustrating, frightening, and oh so rewarding.
When my son, Mike, was dying I knew I needed help supporting Mike AND survive and thrive myself. I went shopping for a counselor. No surprise to you – I am not an easy patient. But I was willing to do the work. My shopping eventually led me to three counselors. The first, a friend highly recommended. This friend had survived leukemia with several years of chemo, stem cell transplant and heart surgery. His mental and spiritual health were shaken. I could see that this counselor had really helped him. I made an appointment. The guy popped Altoids Curiously Strong Peppermints the whole time. To keep himself awake? No go. Still shopping. The next counselor I knew from work. She was on my providers’ council. She asked questions. I answered. How did I feel…? I didn’t need talk therapy. I had family and friends. I needed a roadmap. How do I manage myself? The third counselor spent 5 minutes asking me about diet, sleep, exercise, pooping, my family, transportation. You have to take care of the basics to manage grief. Then he said, there’s stress you can manage and stress you can’t. Grief is stress that’s hard to manage. There it is. It’s not going away. Now tell me your top two stresses in your life right now. That was easy. On top – My mother. (That’s another story for another day). Tell me more. I told him more, another 10 minutes. Then he gave me three things to try to help manage the stress with Ma. I spent 45 minutes of the allotted hour with him! He was a keeper. I tried all three recommendations with Ma. I could pull off two. Rapidly less stress in that arena. Therapy from a master is worth shopping for! He’s still part of my team. I talk to him on the phone from time to time – like when I was first diagnosed with Multiple Sclerosis. Read More
I received my medical marijuana card from the Massachusetts Department of Health a couple of months ago. I hoped that I could find some additional solutions for cramping, neuropathy, or insomnia. It’s a different world from my 20’s. Then I wanted a recreational high. I never bought pot, just smoked what other people offered. Now that I’m in my 60’s and part of the research industrial complex and the patient/caregiver activist scene, I find this exploration more than curious. The physician I saw for the card, didn’t give me a prescription. Told me about different modes of taking cannabis, a list of the dispensaries in the state, and left me with: People react with such variation. It’s an experiment. Let me know if you have any questions. Imagine that for high blood pressure? I go to a pharmacy and say, I think I’ll try this…
I see on social media that many people rave about the positive effects of medical marijuana. They almost never say what strain, what route, what dose, what effects (intended and unintended), for how long, in what circumstances. Just that they’ve died and gone to heaven using cannabis. I celebrate that they found something that worked for them, but feel no assurance that it might work for me, or what actually worked for them. I’ve reviewed two compilations of research, one from Canada and one from the US. I picked a relevant, seemingly well done, study. I went to four different dispensaries run by three different companies. I asked an earnest young person across each counter about a specific cannabinoid (CBG, CBC, CBD, THC, CBDL, CBN) or terpene that I saw in a study. They sounded very confident while answering my questions but their knowledge seems underwhelming. I did meet one young person (the last of four) who answered, I don’t know. My expectations had become so low, I was excited by the I don’t know.
I understand that marijuana is a drug and like any other drug or therapeutic, the relationship between rigorous scientific comparative effectiveness research and me as an N of one is tenuous. As my first neurologist said, I know what drugs might work for certain groups of people with MS under specific circumstances, but I don’t know crap about you. I need to get to know you and what’s important to you. We will figure that out together.
I bought two different proportions of CBD/THC oil to vape, THC/CBD in peanut butter to ingest, CBD oil to rub on my skin over cramps, and CBD tincture to take under my tongue. Some of the ingredients are in milligrams, some in percentages. I bought a scale that measures micrograms. How do you compare mgs. and percentages? How do you compare smoke, tincture, oil, and peanut butter? It’s baffling.
I’m intrigued about this experiment of me taking medical marijuana. I’m trying to figure out how to keep track of what I hope to accomplish, what I’m trying, and what effects it’s having. I’m daunted. My spreadsheet is insufficient and too much work. I’m searching for and testing diary/journal apps. I spoke with a scientist friend of mine and together we’re skeptical that I’ll find what I need to conduct the experiment of me in a manner that I can keep up with. It certainly won’t be useful to anyone else. I’d love to be able to keep track of myself (patient-generated data) and have it feed into a larger data set of other people keeping track of themselves with analysts examining the data and us all learning together. I’m certainly going to need some help.
What a hoot. Never would have predicted I’d be here, doing this, at my age. Stay tuned. I’ll keep you posted.
It’s been a strange week post-infusion. The infusion wore me down. My pathological optimism took a hit. Mood has its ups and downs in the best of circumstances. Although I mostly live up, the human condition is variable, jagged, up and down. I don’t dwell much on my Multiple Sclerosis. It’s seriously annoying, but I am not Multiple Sclerosis. This week I can’t shake having a progressive illness, especially during the witching hour from 1 am to 4 am. I saw my physical therapist. She told me I’m progressing very slowly. 2-3% a year over the past five years since she started recording the Boston University AM-PAC™ for me. Sheesh, that’s pretty specific. Slow, but still progressive. Walking’s my biggest challenge, as you know. I’ve gone from walking slowly unassisted to walking better and safer with a cane. Now it seems like I need two canes when I’m feeling less strong and on uneven surfaces. Plus I started using an electric wheelchair when I’ve exceeded my endurance limits. A month or so ago I graduated to a trike with 27 instead of eight gears when I noticed I was living at gear 2 on slight inclines. Ten years ago I set a minimum target of 3500 steps a day. I actually averaged 7500 steps a day five years ago but kept the minimum of 3500 because I so like to exceed expectations. Even my own. Now I average 4500 a day. I’ve only missed a handful of days at 3500 steps in the past 10 years – once when I had pneumonia, and several immediately post infusion.
I don’t share my demons for your sympathy. We all have demons, in different flavors. I share my demons to highlight my goal of operating at peak performance. I used to think of peak performance as something athletes did. Serena Williams, one of my athlete heroes, lives at peak performance. Peak performance is a moving target for everyone as circumstances change. For Serena, the moving target has been age and pregnancy. For someone with a progressive condition, like MS or aging, peak performance is also a moving target.
Peak performance depends on equal shares of genes/biology, circumstances, effort, and luck. I’m a white man born with pathological optimism. Those are genes. I did nothing to get them. They’re gifts. So is the MS. Circumstances are that I live in the US, I have access to many modes of transportation, our water is clean and clear, and electricity is plentiful. We can take advantage of circumstances. Effort is my routine of diet, exercise and stress management, loving my family, feeding my network, showing up. I choose to put in the work. Luck is that I met my wife and that both my sons settled in Boston. I’m thankful for luck. Effort is that my wife and I pulled up stakes and moved from upstate NY to Boston when our sons settled here. Circumstance is that Boston has many choices for healthcare delivery so I can pick and choose. Make sense?
It’s actually fun, curious, gratifying and hopeful to reveal and assemble the pieces of the peak performance puzzle. I never appreciated how much work it is nor how rewarding. It takes a team to live at peak performance. I have a great team. That’s circumstance, effort, and luck.
My mission expressed in my brand, Health Hats, has been to empower people as they travel toward best health. Lately, I feel like I’ve lost touch with the essence of empower. It’s been feeling arrogant. I’m not giving anyone anything. I’m not liberating anyone. I have no magic sauce, silver bullet, elixir, wand, pills or buds for empowerment. Maybe empower means that I’m participating in someone’s work to operate at peak performance. As a guest or a teammate, of course. OK, I can live with that.
Multiple Sclerosis opened my door to peak performance. Thanks for stepping through that door with me. Quite a ride.
I’m often asked about my take on patient engagement. These buzzwords are losing their meaning. Frankly, I find myself at a loss to answer, even though I say patient engagement is my passion. Engagement from whose point of view?
A person engaged in their own health – Isn’t everyone engaged in their own health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s It’s all engagement. I’m engaged in my own health. So maybe that’s not the question.
A clinician engaged in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health. What if it’s not about his engagement with me?
A patient engaged by adhering to their clinicians’ prescriptions and medical plans. Certainly, a paternalistic and common view of engagement. I’m engaged when I follow all instructions whether I understand them, can afford them or can get to them. Wait, maybe it’s not about the patient-clinician relationship at all.
Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the center of care (patients, direct care clinicians, and the people that support them) sitting at decision and learning tables like boards, advisory councils, departmental meetings, product design sessions, insurance company business meetings.
The challenge of giving a serious nod to patient engagement is that few of us are really prepared for success. Being super engaged in my own health means that I’m the CEO of my health team and that I manage myself and my subcontractors well. It means that I have a care partner that can step in when I can’t – a succession plan. It means that I do everything I can to operate at peak performance. All while I’m sick or disabled:( The clinician engaged in their patients’ health means that they solicit and accept their patients’ expertise and they have the humility to accept how little expertise they have in non-drug, non-surgery treatment, or actually, much outside their specialty – like the reality of people’s day-to-day life challenges. Increasing patients’ engagement in governance, design, operations, and learning leads inevitably to pressure for transparent price lists before service, seamless transition from one setting or clinician to the next, on-demand self-scheduling, patient and clinician controlled health data sharing, access to and payment for non-drug, non-surgery treatments, funding research about outcomes that matter to people, and on and on.
I think we need to be more specific about what we mean by patient engagement. And be careful of what we wish for.
I took my foldable electric wheelchair solo on my trip to Philadelphia this week. My last solo wheelchair experience was in New York City in 1977 when I took a course at NYU’s Rusk Institute of Physical Rehabilitation. On the second day of the two-week course, I spent the whole day in a wheelchair by myself. It was terrifying. I got stuck in a pothole crossing Fifth Avenue during rush hour. The ground rules were, never get out of the chair. A homeless woman ran over and pushed me across before I got run over by the honking yellow cabs. On Tuesday, in Philly, I got stuck again in a small sidewalk pothole and a man, sitting on the curb with an “I’m homeless” sign came over and pushed me out. I saw him again on my way back from the restaurant. I handed him $10 and thanked him for helping me. He wouldn’t take it, I was just helping you out. I thanked him again and told him, you helped me and now I’m helping you. He took it. Read More
