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Family man

Spring Musings

By Family man One Comment
8am: Just finished an 11 mile ride on my recumbent trike in an hour and a half. I’ve been riding a recumbent stationary bike in the basement 30-50 miles per week in the basement all winter hoping it would keep my strength up. Takes so long to build up when I lose it. It worked!! I saw a bit of snow hanging on near the path next to Trader Joe’s. Today, let’s enjoy whatever health we have. We’ve earned it.

The Marathon Bombings remind me to appreciate what I have.  It’s precious: my honey, my family, trust. It can change in a second. Appreciation is a magic lever of health. It’s a good sign that the media spices the stories of mayhem with stories of helping in the immediate aftermath. Those affected will need help for a long time.  Honor the caregivers, help the helpers.

Clinicians are from Mars, e-Patients are from Venus

By Advocate, Caregiver, ePatient, Family man No Comments
Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting to best health are very different.
In my journey with multiple sclerosis I find that each member of my very supportive and effective health team experiences the elephant differently. My physical therapist’s goal for me is to strengthen my left leg, ensure my ability to walk safely and balanced with a cane. My neurologist tracks my medication compliance and side effects, my limb strength, my brain scans, my exacerbations.  My primary care doc tracks my weight, my immunizations, my cholesterol, my liver enzymes. My acupuncturist balances my chakras. My wife watches my mood, my balance, my energy level. For my 2 year old grandson, its “Opa no go kaboom.” My 4 year old grandson wants me to be a jungle animal with balance. The health team views me through the lenses of their particular profession, skill, and compassion. I care about all these things, but they are not me. The parts do not make the whole. Most important to me is that I can live life: be with my family, play music, work, think, write, contribute. I don’t want to be more than a little bit of a burden.  Read More

Book review: Far from the Tree

By Advocate, Caregiver, ePatient, Family man No Comments

Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?

More? See the full review here in the Journal for Participatory Medicine
van Leeuwen D. Book review: Far From the Tree. J Participat Med. 2013 Feb 18; 5:e8.

Reading your own EKG?

By Advocate, Consumer, ePatient, Family man No Comments
There’s been a great thread on Dr. Wes’ blog and the Society for Participatory Medicine’s  list about patients obtaining and reading their own EKG’s.  As you can imagine – lot’s of pros and cons. A significant difference noted between the right to have the information (tracing) and the ability to interpret the tracing and use it to guide health management. The first is black and white to me: of course we can have our EKG’s. The interpretation and use of the interpretation is more grey.

When my son was 10 years old I was heavily involved in teach Advanced Cardiac Life Support ACLS (25 years ago).  We home schooled. I took him to most of the classes I taught – 20 or more of them over a couple of years.  He became very interested and studied the heart rhythms (EKGs), intubation (putting a breathing tube in through the throat), the algorithms (procedure for managing a code including recognizing heart rhythms, selecting the correct medication, and breathing), and leading a code. He studied and rehearsed a lot. He passed the test! He put some physicians, including cardiologists to shame. I’m not sure of the implication of this anecdote, but it fits somehow.
I find it ironic that we can question owning and possessing our health information more than owning a gun. What is wrong with this picture?

It’s a Caregiver Xmas

By Caregiver, ePatient, Family man 2 Comments
I started crying today. My wife reminded me to rinse my mouth with salt water. I had a tooth extracted. Silly, but my heart was full. What would I do without my caregivers? My wife, my sons, daughters-in-law, sister, even grandsons. My 4 year old grandson, when we play jungle animals, wants me to be an animal with balance (a snake – can’t fall down). My one year grandson makes sure I have my cane when I go out. When diagnosed with MS I felt like I won a lottery I didn’t buy a ticket for. Caregiving is an act of love. It occurs to me that most chatter about best health doesn’t honor the caregivers. Honoring caregivers – a magic lever of best health – Xmas for caregivers. My thanks to my caregivers – from my heart. How can we better honor the caregivers?

Thanks Giving

By Family man No Comments
Thanksgiving is my family’s signature holiday. We like to appreciate. This year I appreciate my family – soothes my soul, entertains me, keeps me honest. I appreciate my layoff – affirming my passion for the e-Patient, opening new vistas and sandboxes for me to play in. I appreciate my music – soothes my soul, humbles me, reminds my that my Swiss Cheese (MS) brain can still learn. I appreciate my growing network-inspires me and encourages me. Oh my, I hear a theme – soothing the soul, learning, humility, inspiration, fun. For this I give thanks.

Scents of Commonality

By Caregiver, Consumer, ePatient, Family man 2 Comments
I am the child of holocaust survivors. Recently I’m hearing more about my mother’s life as a German Jew in hiding in Netherlands for her teen years. It strikes me as an empowered, engaged ePatient how our different life situations change the meaning of ePatient. In her case, survival was paramount, then boredom and fear. Isn’t that health? She tells about surgery for my grandfather on a kitchen table. Wasn’t she an ePatient? What I think of as health is very different. I am white, comfortable, loved, with little fear. I’m a worried well person with a chronic disease. I focus on other portions of the health continuum: meds, appointments, weight, diet, balance, stamina. My friend Cristin Lind’s blog Durgatoolbox dramatizes this lopsided continuum in her son’s care map.  The similarity for each scenario is that best health is hugely more than medical institutions address. No matter how much I try, I can’t get my brain around what my mother experienced. I can’t get my brain around what Cristin and her family experience.  Yet I can pull threads of understanding, empathy, compassion. Scents of our commonality. How do we share ourselves as we are ePatients? How can we help professionals on our teams pull those threads, whiff those scents?

World Mental Health Day

By Caregiver, Family man 3 Comments
My heart aches – I have loved two people with serious mental health disease. I am a caregiver, I want to be a contributing part of my loved ones’ health journeys. Heck, I became a nurse because I find fulfillment in being an intimate part of people’s health journey. I felt gnawing  inadequacy living with my loved ones with serious depression. It killed me that they didn’t appreciate themselves as much as I valued them. We couldn’t figure out how to let me in to be part of their team. They were so alone, I got so angry. I honor this day to honor them. Lillie and Peggy, you made life rich. Thanks.

Magic lever – grandchildren

By ePatient, Family man No Comments

My grandson, age 4: Opa (that’s me) go get your cane, let’s play in the yard.

Opa: Sure, what should we play?
Grandson: Jungle animals
Opa: What animal should I be?
Grandson: One with balance. 🙂
Why do I feel so wonderful hanging out with my grandchildren? My heart is open, I laugh. Where else can I be, but in the moment. Truly, grandchildren are magic levers to best health.

Magic lever – resilience

By Consumer, ePatient, Family man, Leader No Comments
Tragedy is the common unifying force of life and organizations. The more seasoned you are, the more likely you are to have experienced personal and organizational tragedy – a death, diagnosis of serious illness, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss.


My daughter-in-law texted me, May the force be with you, as I was in the midst of a personal tragedy.  What is this force, this superpower? How does a person or an organization survive a loss, a tragedy and regain best health? Resiliency. According to SAMHSA resilience is the ability to:
  • Bounce back
  • Take on difficult challenges and still find meaning in life
  • Respond positively to difficult situations
  • Rise above adversity
  • Cope when things look bleak
  • Tap into hope
  • Transform unfavorable situations into wisdom, insight, and compassion
  • Endure
The American Psychological Association reports the following attributes about resilience:
  • The capacity to make and carry out realistic plans
  • Communication and problem-solving skills
  • A positive or optimistic view of life
  • Confidence in personal strengths and abilities
  • The capacity to manage strong feelings, emotions, and impulses
Can resilience be learned? How can we increase the resilience capacity for ourselves, our families, our organizations, and our communities? What tools can help increase our resilience capacity?