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MS | Danny van Leeuwen Health Hats

Dec 01 2019
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Gratitude, Podcasting, Best Health

By | ePatient, Family man, Leader, Podcasts | No Comments

Podcast: Play in new window | Download (Duration: 12:27 — 11.3MB) | Embed

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I’m not a religious person, but I am spiritual.  I’m at one in my relationship with a higher power, God, if you will, when I recognize and feel gratitude. Gratitude for living at peak capacity, for my loving family and friends, for an engaged health team, for the Forward Link community, for music, and for clean air and water.

On this first anniversary of my podcasting journey, with 52 episodes and 3,000 downloads under my belt, thanks for your continuing support.  I’m grateful for you and all you do. Happy Thanksgiving! Best health, you and yours!

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Feb 04 2018
1

Health Hats: Reflecting on 2017

By | Advocate, Caregiver, Clinician, Leader, Researcher | No Comments

Since I stopped being an employee or a boss two years ago I’ve written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I’d keep it up now that I’m retired from that. Helps me be sure that my work serves my mission. With so much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat). Read More

Oct 29 2017
2
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

Jul 16 2017
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What Keeps You Up at Night?

By | Advocate, Caregiver, ePatient | One Comment

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)

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Apr 02 2017
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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

Feb 19 2017
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Tales of Woe

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader | One Comment

From my memorable quotes pile:

Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?

Recently diagnosed patient:  I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office.  Now I’m home, how do I get my questions answered? Read More

Dec 29 2016
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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.

Nov 27 2016
1

Giving Thanks

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Musician | 4 Comments

I’m thankful for the superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.

I’m thankful that I was born a  white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.

I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.

I’m thankful for my extended family, characters all.

I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.

I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.

I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.

I’m thankful for my grandsons – OMG, what can I say?! Read More

Nov 20 2016
1

Health, Wellness, and Medical Decision Support, Wherever and with Whomever

By | Advocate, Caregiver, ePatient, Researcher | 3 Comments

When diagnosed wcdsith multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS.  I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me.  No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive.  Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.

When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.” Read More