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
Best Health depends on relationships -relationship with my health team, my relationship with myself. We can accomplish much in these Best Health Relationships. We take stock, tell stories, complain, report, plan, decide, learn. These relationships impact our spiritual, mental and physical health. Relationships take time. Time as in arriving (scheduling, traveling), being present and accomplishing something (catching up, problem-solving, planning what’s next). Time is key to these Best Health Relationships. Early on in relationships, to establish a connection, a language, a trust, in the relationship, it’s either longer spans of time at each sitting or more frequent sittings.
During my first visit with my neurologist, he said, I know a lot about drugs and therapeutics for Multiple Sclerosis, but I don’t know anything about you, except your brain scan. My job is to get to know you. Your job is to learn about Multiple Sclerosis. Our visits were often long – 45 minutes, an hour. Soon we developed a short-hand and routine. What’s on your list? This is on mine? Wait, I think we missed one thing on your list. OK. We decided I’m going to do this, you’re going to do that. Text me to let me know how it went. Ten-fifteen minutes tops. A new clinician starts the cycle over. Build a relationship. Sometimes there’s no chemistry. Then the time (of any length) is mostly wasted, ineffective, especially if I’m in any distress, which is often. Read More
I’m ready to quit playing my horn. I can’t seem to bring what I’ve learned while playing at home (practicing) to rehearsals. I’m lost. I have fat fingers. I can’t find a 2 or 4 measure rhythmic pattern that works. I lose my place. I can’t seem to learn the language. I definitely I don’t have the muscle memory yet. It’s disheartening. I’m used to being good at what I do. I was a great bedside nurse. I was a really good boss. I’m a prolific and engaging writer. I’m sought after for my patient/caregiver activism. Music, not so much. I’m persistent, not talented. I’m humbled, playing music. Part of the secret sauce to managing my Multiple Sclerosis, is that I keep manageable stress to a minimum. Being a boss and employee was too stressful, so I stopped. I don’t have secrets. My close relationships are fresh and up-to-date. I adapt well to my slow reduction in function. Playing is stressing me out. Wait, I haven’t had a sax lesson in months. My teacher is very good. Positive and creative with my fluctuating abilities. Tells me to play less. I didn’t stay at the top of my game in my 40+ year career without coaching and mentoring. It wasn’t possible. I play for a reason. It’s one of two outcomes I track with my doctors (falling and playing the saxophone).
I’m not quitting. Thanks for listening.
I trust my primary care doc. I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight. It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.
I’ve questioned my primary care doc about taking cholesterol-lowering meds. She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again. I still trust her. I’ve stopped taking them.
I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues. Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.
A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.
Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.
As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives. We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.
At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy. Afterwards, someone at my table said,
From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.
I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team. Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.
See also other posts about Improv and
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