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multiple sclerosis Archives - Danny van Leeuwen Health Hats

From the Inside Looking Out

By | Caregiver, Clinician, Consumer, ePatient, Family man | No Comments

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

Patient-Centered Outcomes Research Institute

Learning from What Doesn’t Work

Patient-Centered Outcomes Research Institute

Reauthorize PCORI. We Need It!

By | Advocate, Caregiver, Clinician, ePatient | 2 Comments

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

I am Not My Condition

By | ePatient | One Comment

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

Learning What Works

Learning What Works

By | Caregiver, ePatient, Researcher | One Comment

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

Checklist

Plan of Care – So Many Questions

By | Caregiver, Clinician, ePatient | No Comments

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

What Keeps You Up at Night?

By | Advocate, Caregiver, ePatient | No Comments

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)

Read More

Service Agreements for Me and My Health Team

By | Advocate, Caregiver, Consumer, ePatient | 2 Comments

I wrote a blog post a couple of weeks ago for the Society of Participatory Medicine about Service Agreements Among Friends and Colleagues. My point was that service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. I shared my post with my colleagues at Involution Studios while we discussed the future of Precision Medicine.  What if we had service agreements with members of our health team? Professionals and non-professionals. And ourselves. Could we think of care plans as service agreements? Person-centered care planning focuses on the goals of the person on the health journey. Who’s going to do what to get there? When? How will these goals and activities be tracked and shared across time and settings? The service agreement is the who’s doing what to get there and when are they going to do it? If my goal is to progress as slowly as possible with my Multiple Sclerosis, then my part of the service agreement is that I will: Read More

Coalition for Compassionate Care of California

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | One Comment


I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations). Read More

Re-calibrating – Finding Balance

By | Caregiver, ePatient, Family man | 4 Comments

So, I have new MS lesions. I’m weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I’m recovering. What will my new normal be? Once again, I’m grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a responsive, loving, skilled health team are critical priorities for best health.

I’m out of balance. Balance implies constant motion – seesaw-like. It’s almost never a steady state. Balance occurs occasionally naturally while going up and down. A balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. Sometimes balance is an active process – change something, add weight, take off weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out, resting, and return to balance as part of the normal see-saw. I’m lucky that I have a low tolerance for being out of balance.  I feel it acutely. I find it easier to be active attaining balance than to give myself some grace and let the balance return more organically. It feels better to be creating space and appreciating space.  More optimistic, better spirit.  Let’s see what happens. Honor caregivers. Help the helpers. Happy New Years, dear readers.

#CarePlanning – a Mission From God

By | Advocate, Caregiver, ePatient, Family man | 3 Comments

My wife and I built a house together – the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling.  Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.

No wonder that a person’s health team struggles to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

Let’s focus on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings? Read More