Rest | Danny van Leeuwen Health Hats

Favorite vest

Adjusting Your Personal Health Plan? Right…

By Caregiver, ePatient No Comments

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

Personal Health Goals

By Advocate, Caregiver, ePatient, Clinician, Consumer, Family man, Uncategorized 2 Comments


As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals.  What do I mean? OK, people who are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. 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.

Superpower: Opening our hearts

By Advocate, Caregiver, ePatient, Clinician, Leader, Consumer, Family man, Musician 5 Comments

I’m scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren’t for others – all sorts of others. Feelings of injustice can power so much. I don’t pretend to understand all the righteousness, anger, and meanness that erupt when disappointment builds. But it feels as familiar as the human condition throughout the planet and over the ages. It’s like earthquakes from fracking.  I’m thankful that my mother, a Holocaust survivor, is no longer alive. She would be apoplectic and inconsolable.  What’s going to happen now? How should I act? As when grieving, I will mindfully minimize controllable stress – exercise, rest, listen to and play more music, spend more time with friends and family. I will continue to give thanks for all I have in my first world life. I will continue to pursue my passion for maximizing the experience of people at the center of care. I pray for the physical and spiritual strength to speak up, stand up, and act when the moments seems right. I’ll need strength to take the high road in this low road time. More than anything I’ll pray for unexpected open hearts. The community needs it. Our grandchildren need it.  The unborn need it. Onward.

Pocket Therapy for #Caregivers

By Advocate, Caregiver, ePatient, Family man 4 Comments

My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family.  A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.

Elderly woman

Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home.  Now I realize that is selfish.  I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that.  Read More

Pausing – A Magic Lever of Best Health

By Advocate, Caregiver, ePatient, Clinician, Leader, Consumer, Family man, Musician 4 Comments
Yesterday, my wife took me to Boston Improv for my birthday. My daughter-in-law took me out for lunch. This week I found myself spacing out several times at my desk.  I listened to the rhythms of conversation in meetings at work.  Today, I played some blues on my bari sax. What do these scenarios have in common? The pause: A moment’s break to listen, to reflect, to balance.
During improvisation, comedy or music, players need a second or two to listen and feel the groove while contributing. Otherwise it’s cacophony. The pause, not blowing the horn, not talking, is integral to the rhythm. You could say that the rhythm is the space between the sounds. When work piles up with e-mails, reports, and to-dos, we need desk time with a few minutes to reflect on the purpose and quality of our work. Otherwise it’s disconnected and exhausting. The pause, however brief, settles the mind, allowing it to breathe. During conversation we need a few seconds to digest the message we hear before jumping back in. Active listening requires time for the person to complete their thought.  Often I jump right in, rushing to contribute as soon as the sound from the speaker’s lips stops. Getting my sound in before someone else jumps in. Lord, that’s a tough one. During the chat with my daughter-in-law, we spoke about a different kind of pause: pace of life and balance – allowing the space for music, exercise, family, health appointments.  It’s a challenge for working parents and someone with a chronic illness, or both, or neither for that matter.
Honor the pause. It’s integral to best health.

Increasing the Balance in Our Health Journey

By ePatient, Leader, Family man, Musician One Comment

I’m using my health team actively this past month. I’m bone tired, stressed about work, worried about my health, all without my usual optimism and positive thinking. I’m out of balance. Yet, my mission is to increase the balance people, caregivers, and clinicians feel as they journey together towards best health. I need the balance, too, if I’m going to continue to meet my mission. Thankfully I have colleagues on my health team that can help. My career coach pointed out to me that I spend 90% of my time focusing on the organization I work for and 10% on myself. My music teacher suggested I focus on one music venue and cut out the others for a while. My physicians are helping me manage the path through some elective surgery. My personal counselor suggested time to recover – a weekend of meditation and a long weekend in Newport with my honey. As a leader, I do think about balance with my staff. Family first! But I don’t think we really balance well. I contribute to the lack of balance by pushing, pushing the envelope.


Balance implies constant motion – seesaw-like. Balance occurs occasionally naturally while going up and down. Some time a shift in weight, sometime a major lightening of a load. Balance needs space and time to recalibrate. To think, to reflect, to adjust, to meditate, to vacation, to take a deep breath. How do we help each other create space and then balance? I worked for a Catholic organization that often used the word grace. Thanks for giving me some grace. I could use a little grace here. The agency I work for now says,  first we listen. That’s another kind of space. Sometimes balance is an active process – change something, add a weight, take off a weight. More time at work, more time with family, more music, more exercise, more greens. Sometimes it’s laying back, letting life play out 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 to attain balance than to give myself some grace and let let the balance return more organically. It’s feels better to be creating space and appreciating space.  More optimistic, better spirit.  Let’s see what happens.

Take a break – now

By Caregiver, ePatient, Consumer, Family man 5 Comments
Today I’m bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious – tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most need these skills. Mental health challenges can make it harder to identify – even mask – and work with medical issues. How do we rejuvenate from being run down from physical or mental ill-health? How do you take a break-get some rest? I find that small things help – wear the brightest bow tie when I feel the worst, have a piece of chocolate, cuddle with my honey, take 5 minutes to bitch and moan, drink lots of water, take a power nap, listen to Paul Simon’s Graceland, enjoy smaller meals, laugh, cry, or sigh, eliminate manageable stress, exercise, get a massage. What works for you?

What do Caregivers need to manage health?

By Advocate, Caregiver, ePatient, Consumer No Comments
What do caregivers want from Health Information Technology (HIT)? Most caregivers, people at the center of care, don’t think about HIT. They think about what they need to manage individual health, theirs or the person they support:

  1. Quality of life
  2. Control of their life
  3. Peace of mind, rest, respect
  4. Relief from pain and worry
  5. Reduction in controllable stress
  6. Connection to others – not alone
  7. Common goals for the health journey developed with the person at the center, known by the entire health team
  8. Plans to meet those goals
  9. Current medications, schedule of taking, how they affect the taker
  10. History of medications, what worked and what didn’t
  11. Members of the health team, professional and lay people, how to reach them and the ability to reach them
  12. Schedule of events past and future – procedures, hospitalizations, diagnoses, appointments
  13. The same information in the hands of the entire team including the people at the center that they can understand
  14. An understanding of real and potential risks and a plan of how to manage those risks when they occur.
  15. Affordable and accessible care
Over the next few weeks I’ll think about how technology could help with any of these 15 needs. Remember, though, people and relationships first, then technology.

Engagement after the Olympics – a Marathon not a Sprint

By Advocate, Leader No Comments
 I’m watching the Olympics a lot this week. These athletes are so focused and consumed with their event. Many of us committed to participatory health have a similar focus in our health journey or the health journey of those we support – head down, training, grinding, overcoming the next obstacle. Eventually, periodically we can take a moment or an hour or more to look up and take in the landscape. Our outward attention is dear. What’s the road map for expanding the circle of a participatory health care culture?  How do we make best use of those moments to engage others? I’m a person who likes to have an impact and enjoy myself in the process. I think about the culture of health care pretty broadly. We can impact our homes, our extended families and networks, our communities, our clinics and doctors’ offices, our institutions, and our government. Remember, while most chatter is about health care within institutions and government, in balance most happens outside in families, networks, and communities. So, list those scenarios, locations, subjects that you have a passion for. Show up. Find others you meet who are trying to have an impact – for me its this blog, the Society of Participatory Medicine, HIMSS’ Connected Patient Committee, PCORI, and now my town’s Disability Commission. Note those you see as a role model – engage them, copy them, join them. The good news is that there’s so much opportunity. If you try something that doesn’t feel right-no impact, not fun – there’s always something else to try. Move along-again your energy is dear. Meanwhile, take care of yourself – you’re dear to us. This is a marathon, not a sprint.