Endorse the right to access your health data!

No patient/caregiver/provider can do his or her job without access to data. That's why I support "A Declaration of Health Data Rights" from HealthDataRights.org.

ENDORSE NOW

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

ENDORSE THE RIGHT TO ACCESS TO YOUR DATA NOW

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Father's Day and Multiple Sclerosis: A Two-step Dance with Dad

originally published in 2008

Wasn't it Anne Sexton who said "It doesn't matter who my father was; it matters who I remember he was." That quote invites me to reflect on the fact that memories of my father are divided into: Memories of Dad before MS (Multiple Sclerosis) and Memories of Dad after MS.

MS first visited my dad when he was 50. It was sneaky: A quiet but persistent tingling in the toes and intense fatigue that he just couldn't shake. (Learn about early symptoms.)

I was 17, preparing for college, the future. Dad was in a different place — his own pain — a pain he held privately for a long time.

Because an MS diagnosis may take a while to be confirmed, he spent many years fighting what ultimately became a confirmed MS diagnosis.

He was determined not to believe it for a while and just figured he'd "push on through." (Just the same way Dad would cope with cold and flu ...)

But MS had a better plan. Let's just say it took as long a time for the disease to unfold as it took for my dad to accept the diagnosis. Maybe that was a saving grace, since a faster progression might have been too much for him.

Before MS, my dad was active and outdoorsy. Very much a "man in his body" he liked to work hard and play hard. I remember my dad — built like a lumberjack and with the ruddy complexion of a sailor — up on the roof fixing cedar shingles, sailing our small boat with friends and family, building custom cabinetry for the house, and doing everything he could himself in order to save money for the future, for education.

Dad kept his family active too. I remember my father skiing downhill on frosty mountain mornings. I remember the long rides he scored while body-surfing in the Atlantic. I remember tennis lessons with him, and watching him genuflect at the edge of a church pew on Sunday mornings after a rowdy Saturday evening with his friends ...

But if I had to pick one pre MS memory of Dad to preserve it would be of him on the dance floor. My dad was so sure-footed and gifted on the dance floor that he literally made any woman glow-n-glide like a natural. The last dance I shared with my dad was on my wedding day, an impressive 12 years after his initial diagnosis.

While I will forever and always cherish the meaning behind that last dance with dad, I have grown to love and admire, just as much, the memories my post-MS dad — still just 65 years old and full of life — gives me.

For instance, I am so very proud that after years of teetering on the verge of a fall, rather than using one of the canes he bought "for the day he needed one" my dad has given his family the memory of a man who accepted his diagnosis and is learning to live well with it — even though the losses continue to be significant and they hurt a lot ... a real lot.
I am proud that after years of fighting his diagnosis my dad teaches me and my children to ask and receive help when they are sick or need assistance.

I am proud that after avoiding the learning he was being asked to do, my dad is now enrolling in drug studies and that he uses a scooter to stay engaged and independent in activities when his energy affords him the chance to do so.

I love and deeply admire the courage my father shows when he makes small adjustments to his life with MS. Instead of building and installing those heavy wooden cabinets, he now carves award-winning decoys of light-weight wood. Instead of being first at sports, he's first with patience for others ... and first to accept when someone he loves comes up short.

It may sound corny, but Dad, you have given me the memory of two men's lives. I will cherish them both always.

Happy Father's Day to a guy whose life gives a whole new interpretation of the famous old Two-step Dance. We love you so — perhaps twice as much — for being who you are.

Summer with Children: Remembering the Gift of Parenthood

Written by Margaret Leeson, mother of 3

We are entering that blessed season when, hopefully, our children's schedules thin and they are, thankfully, left with more time to contemplate and experiment with boundaries. As I ready myself for my first summer with a teenager in the house, I am especially aware of the bounty of opportunities that lie ahead: for her to pull one way and for me to gently remind that, yes, there are still boundaries even after 13. And with good reason.

The last several months have provided moments for me to get warmed-up in this arena.

As in much of life, sometimes in parenting lessons come to us from the backside. For one lesson I am particularly grateful, even as it caused disappointment at the moment of impact. Allow me to recount this simple story. Simple though it is in that it likely replays itself daily throughout our culture, the lessons taken home for me hold great significance.

Not too long ago, a group of my elementary school sons’ peers labeled me “over protective.” Their primary basis for such labels, they told my sons, is that I do not allow my boys to play the Xbox 360 Halo games. (With the exception of one Halo game which is rated for a Teen audience, the Halo games are rated for a Mature audience.)

Although I have followed the underpinnings which lead to this encounter, the exchange nevertheless surprised me. What surprised me the most about the accusation is the judgment that necessarily underlies the label “overprotective.” The Random House College Dictionary defines “over protect” this way: “to protect (esp. a child) to the point of inhibiting appropriate action or development.” And so the logical conclusion is that the activities to which the other children were referring are “appropriate.” The question raised for this parent, then, is: How do we define appropriate? What if everyone else is doing it? What if your intuition guides in a fundamentally different direction from the tides in which your children swim?

Recently, I had the great privilege of listening to a talk titled “But Everyone Else Is” by Michelle Kriebel. Michelle is a consultant with Jeff Wolfsberg & Associates, Inc., Drug Education and Wellness Specialists. She travels the country speaking with parents in the middle school years about the topic of peer pressure: How deeply it permeates our children’s lives and how to gain perspective on the intensity of emotions that it engenders.

Essentially, the basis for the intensity of peer pressure and the “But Everyone Else Is” perspective is two-fold:

1. The frontal lobe (in particular the prefrontal cortex) of the brain (that part of the brain responsible for careful and reasoned decision-making) does not develop until a child reaches his early to mid-20s. The part of the brain which governs childhood as well as early and late adolescence is the amygdila. The amygdila is all about impulse. The amygdila is concerned with the now, with the immediacy of our emotions. For better or for worse, the amygdila also invites us to take risks.
2. Vastly expanded technologies of communication, together with the manner in which content is disseminated over the Internet and into our homes have exponentially expanded our children’s notion of the “everyone.” These expanded technologies have also enabled widespread exposure to content which many believe is not developmentally appropriate for the audience which consumes it.

Given these two forces: the undeveloped frontal lobe and the vastly expanded notion of “everyone,” I took home one final valuable lesson from Michelle’s talk. This is the message that children expect us to serve as their frontal lobe, they need us to guide them and model for them and they are emotionally stronger and happier when they know that they have the steady hand of their parents at the tiller while they struggle to weather the storms of growing up.

Given the fact that the amygdila does not enable a child to see the consequences of his action, the message needs to be this: although we need to love our children unconditionally, we do not need to trust their judgments and desires unconditionally. Parents need to remember that, although children and teenagers may act and look like they do not need our guidance or judgment, their brains depend on the perspective and reason of adult minds. And, that is the gift to which the title refers.

The freedom of summer sometimes lays a heavy hand on the true meaning of what it is to be a parent. This year, thankfully, I am reminded that to be a parent is a gift and with that gift comes opportunities to grow and open our minds as we parent.

Bibliography for thoughtful summer reading:

Taking Back Childhood: Helping Your Kids Thrive in a Fast-Paced, Media-Saturated, Violence-Filled World, by Nancy Carlsson-Paige, Ed.D.

Hold On to Your Kids: Why Parents Need to Matter More Than Peers, by Gordon Neufeld, Ph.D. and Gabor Mate, M.D.

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, by Ross W. Greene, Ph.D.

Raising Resilient Children, by Robert Brooks, Ph. D. and Sam Goldstein, Ph.D.

Summer, Act I: Get to the Point, Orient Point

Wondering how I resolved my interest in creating unstructured outdoor play for my kids this summer? Here is the update:

It's official, we're heading to Orient, New York, population 709 (2000 census), for some mom-grown, homespun, wetlands education, wildfowl watching, surf skimming, journaling, and (fingers crossed) not-so-much cabin-fevering fun!

I found a sweet cottage that was just slightly more money per week than I would have spent on camps, plus. Now, I am left to plan how to structure our time (so that we don't spend every second of the day together), and I can remain on the grid partially to tend to my projects.

As always, if you have ideas, suggestions, send them along.

Stop back tomorrow for a guest post by Margaret Leeson, on summer's subtle parenting gifts.

The mother of all health reform

Wish we could point to her, call her by name. What a fabulous spokesperson she'd be. ...

Truth is, there isn't a sole woman behind the movement to reform America's health care system. There are actually dozens of highly trained, powerful men advocating for the "feminine principle" to be restored to our care model. I say "men" to make the point that the feminine principle is not about gender. It is about possessing an awareness of the language, character, and capacity for nurture.

The "mother of all health reform" is an attitude within.

As an organic set of traits for both men and women to cultivate in their adult lives, "anima" balances the masculine principle - the traits that keep us all driving toward outward success, wealth, power, and the most "followers" in any sphere we influence - with the inner drive to connectedness.

The feminine principle is, at the highest level, behind many social movements today.

Think of the Slow Food Movement. What started as a modest philosophical statement, a quest, to restore responsibly produced and nurturing food to the table, the grocery store, and the restaurant has blossomed into a series of "convivia" located around the world that aim directly to advocate for change at the local level. The Slow Food movement has inspired spin-offs: Slow Movement, Slow Money, Slow Travel and Slow Living.

Could "Slow Medicine" be next?

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