MS | Danny van Leeuwen Health Hats - Part 3

Labels – DisLabels

By | Advocate, Caregiver, Consumer, ePatient | 3 Comments
I’m disabled.  Iidentifyashaving a disability.  Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.

Disclosure – Revealing health issues

By | Advocate, Caregiver, Consumer, ePatient | One Comment

Disclosure: The act of revealing something. How does disclosure impact life for the disabled, chronically ill, or their caregivers? Disclosure has a threshold: before disclosure, after disclosure. Revealing something that may impact success or perception. I have multiple sclerosis, mental illness, am an amputee, have a son with autism, am very short, have chronic pain, manage my father’s care on the other coast. I’m applying for a job, college, a loan. My situation has changed, I’m newly diagnosed, I’ve taken responsibility to support…..

There’s legal implications: non-discrimination; fitness to do job. There’s personal style and boundary implications: I am who I am; it’s nobody’s business. It’s situational, personal, risky. Read More

Test driving – Still shopping

By | Caregiver, ePatient | No Comments
I test drove a new neurologist this week. I’m still shopping. Two factors affected my continued shopping: no spark between us and no portal / doesn’t communicate by e-mail. The practice was cool and efficient, the physical exam was thorough. Nothing asked about me, my experience with MS, my goals, my challenges. No relationship building. I asked why I should choose this practice. “You want me to sell myself?” Nothing after that. I can’t imagine care without e-mail or a portal anymore.  I rely on it so much. Their form asked me how I wanted to receive information: what to leave in a message, who I gave permission to share information with. Impressive, butn ot enough to buy though.

On the other hand my experience with my current MS Clinic this week was different. I needed a refill on my MS medication. I sent an email to the administrative person – he’s was out of the office on vacation. The nurse I worked with has left.  I couldn’t select the covering physician because I haven’t seen him yet.  I emailed the portal’s tech support who explained the rules, but fixed it for me. Helpful IT! Then I contacted the covering MD who responded in 4 hours that he had renewed my script. And he looked forward to meeting me (I don’t have an appointment with him yet.) I think I’ll test drive him next.

Honoring and aligning silos

By | Advocate, Caregiver, Clinician, Consumer, Leader, Musician | No Comments
Teaching in a nursing leadership academy this week about acting as a change agent or change catalyst in an organization or team. Common theme for the participants – frustration overcoming silos, working across silos, aligning silos – silos, silos, silos. As a family member, as a nurse, as a band member, as a person with MS, as a team leader, I respect and value silos. Defined boundaries – them and us – helps with identity, internal effectiveness and growth, focus, controlled expertise, and protection. At the same time I’m the health hats guy – proud of my many hats, teams, identities. I try to connect dots, align, reach across, welcome, join, participate. I’m anti-silo. Quite a tension. Who doesn’t deal with this challenge?  How do we value silos and overcome them? Appreciation, trust and alignment.

First, appreciate other silos as reservoirs of ability, history, perspective, and value. Next, be trustworthy to other silos – share, deliver, respect. Trust in each other’s strength, abilities, integrity. Finally, align. Clarify joint mission – together we’re trying to do something – better life, spread knowledge, entertain, growth and development, best health. So if we know what we’re trying to do together, if we act in a trustworthy way, and appreciate each other’s value, then we can honor and overcome silos. A magic lever of best health.

Finding a New Doctor, Oh My! Part 1

By | Clinician, Consumer, ePatient | 2 Comments
My neurologist has moved away. I’m grieving. Granted he was a curmudgeon with mixed bedside manner. But we were very compatible. He was always available (email return within 24 hrs), he answered my questions, asked if I had any more, educated me, reassured me, and understood my life goals. The electronic medical record was state of the art, meaning only fair. He didn’t use the Open Notes feature (remember curmudgeon). The team of nurse, assistant, and physical therapist were also characters, but competent and has each gone the extra mile for me. Since my job changed it’s been way less convenient for me to go to his office. So now that he’s leaving, I’m reluctant to start with a new doctor in the same practice. How to choose? First I thought of going to a neurologist close by in the hospital my wife works in, but he’s a solo practitioner and not part of their MS team. My departing neurologist recommends one practice, I’m curious about another, Unfortunately, our insurance, from my wife’s employer, has both the MS practices I’m interested in on a Tier 3 – much more expensive. $150/visit versus $35. Money is certainly not my first  consideration-we’re doing OK financially, unlike many. How important is the recommendation I received from the departing neurologist? He disses several doctors that I like (again curmudgeon). I want a full MS clinic with other specialists who talk to each other and work together in case/when my MS progresses. I want physical and occupational therapists who know MS. I’m a nurse, I want nurses who know me and know MS. You get the drift. I want a place with an evolving improving electronic health record. I want commitments about response times. I want people who will partner with me and listen to me while giving it to me straight. My previous neurologist once emailed me back, “Oh, get over it.” Another time, “this is new, I can see you tomorrow.” (curmudgeon). I will check out the prospective doc on my first visit. How much does she listen? What kind of coverage is there? I’ve tried to ask about the clinic on patientslikeme.com but no takers. I’m trying to find nurses who might know the nurses at the clinics. We’ll see. I’ll keep you posted. Having an ace team is everything. Losing a member is tough.

Things That Go Bump in the Night

By | ePatient | 2 Comments

From goulies and ghosties and long-leggedy beasties
And things that go bump in the night
Good Lord, deliver us!

During the day I’m pathologically optimistic. Life is good. I won a lottery I didn’t buy a ticket for. I am at one with my body, whatever shape it’s in. My demons come out at night. Why me? I’m tired of having Multiple Sclerosis. Is this the beginning of the end? Will I be too much of a burden?

Fretting interrupts my sleep more than anything. Easily more than physical symptoms. Fatigue affects my ability to cope. Lately, it’s a marked increase in paresthesia (skin tingling, tickling, prickling, pricking, or burning skin) caused by neuropathy (damage to nerves) from the MS. Thankfully, its remains in the seriously annoying continuum. Actually, it really doesn’t affect my ability to do anything. So after a few days of freaking at night, I can sleep fine now.  What’s different? I’m not taking any medication, even though my neurologist prescribed something I’d rather not take. Well, being reassured that I’m not having a flare-up or relapse helps. Grieving my sorry state with my loved ones helps. Focusing on loving myself – whatever shape I’m in, helps.
Managing things that go bump in the night is a magic lever of best health.


By | ePatient | 2 Comments
Started a new job – first day – a form asked if I was disabled – along with race. Hmmmm. I checked yes. Last week, went to a church function with my mom. Several people with canes and walkers, including me. Buffet style meal. Disabled first in line with gentle insistent assistance. I was guided to that pre-served group. I can manage my own plate with my cane hooked on my arm, but what the heck, they were nice.

According to the World Health Organization: Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
I have Multiple Sclerosis. I drive to my full-time job, I play my saxophone 4-6 hours a week.  I can ride my recumbent trike 10-15 miles at a time. I can walk about a mile, then my left foot drags. I play with my grandkids. Takes me a while to get up from the floor. I can’t run. I can’t dance. I can’t stand in place too long. If I spin around I go kaboom (as my 2-year-old grandson says). I need a cane about half the time, I just don’t know which half. When asked what jungle animal I should be, my four-year old grandson says, one with balance. I have double vision some of the time. Can be annoying when I’m reading music. I have trouble reading white on pastel. I often don’t know where my body is. I will run into the door jamb if I’m not careful. I have to hold on going up and down stairs. So I guess I’m a person with disabilities. It’s a health hat.

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

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?

Hardwiring Continual Learning

By | Caregiver, Consumer, ePatient | 2 Comments
I’m learning to type. Amazing after all these years that I still hunt and peck. Cool though to know that I can still develop new brain pathways and muscle memory. Continual learning with a swiss cheese multiple sclerosis brain:)  I watch my grandsons learn, they just keep at it. Fearless repetition. Why is it that I’m reluctant to learn from others’ experience? When I first had kids, I was told to kiss my life as I knew it goodbye. I didn’t believe it, I didn’t learn from those ahead of me until a week after my oldest was born. Now with health care, seldom do we learn, or rather seldom do we have sustained learning. After decades in health care I feel like I’m seeing the same stuff recycle.  Is patient centered really new? Aren’t ACOs a retread? Quality Management is still only good management. Although there is a treasure of science of best practices, we know that clinicians struggle to keep up, break inertia and change practice based on evolving evidence.

Hardwiring continual learning is a magic lever for best health for individuals, organizations and the health care system. Personally, I only have so much energy and space for learning. Inertia is critical to getting on with life.  Success is inertia for what works, learning for what doesn’t. Continual learning requires mindfullness. How do we design continual learning into our lives, our relationships, our products, and systems?