What Numbers Matter?

Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
Sometimes numbers make me seem a little crazy like my daughters wonderful hair.
I asked for a long time why we cared so much about dots on an MRI if they don’t correlate well with symptoms.  As an MS patient for more than 8 years, I don’t care much about the dots on my MRI.  Still, I can appreciate the goal when we use MRI’s to determine whether our MS is “active” or whether a drug is effective.  We need a measurable, and so we pick a variable we feel gives us the most accurate way to model reality.  Is that not the reason man uses numbers for anything, to describe reality in the way which feels most accurate?
When attempting to solve a problem, one must first define exactly what the problem is.  For us patients, the temptation is to think problem begins and ends with our symptoms.  I think this has been my biggest problem with MRI’s as a measure of MS activity.  Even with a stable MRI, my symptoms progress.  This doesn’t mean MRI’s are not a valid way to measure MS.  It just means MRI’s are not accurate enough to paint the picture I am looking to use.
Over the past few years, I have come to appreciate the inherent logic in dealing with complex systems.  Complex systems are different from complicated systems in that, one can never accurately predict the impact of damage to any one place in the system. They are different from the a->b->c…->z complicated systems where one knows the impact of breaking the chain.  A complex system is more akin to a road system.  Interestingly enough, the complex system theory was designed to replicate the brain, but is more commonly used today for other system models like roads.
One of the studies I found interesting was a recent one showing brain atrophy predicted long term cognitive issues were correlated with brain shrinkage and physical issues were better correlated with flares. http://jnnp.bmj.com/content/83/3/282.long Interesting to me is that neither flares nor shrinkage accurately predicted both.
Brain shrinkage would seem to imply a less able system simply by reducing the size of the system.  Even if we can not identify the specific area of deficit, the sum of all the paths now reaches less than it once did.  If the brain shrinks, the number of alternate paths for signals to take likely shrinks too.  The alternate routes for traffic disappear and the fragility of the system increases, even if it appears traffic is moving at the time.  Shrinkage would seem likely to predict future problems.  This study seems to be validating this assumption at least in terms of cognition.  In doing so, it redefines the problem and measurement of MS.  It is no longer enough to simply look for a flare (think car crash).  One must also look to see if the map still needs folding to carry.
I owe thanks once more to http://multiple-sclerosis-research.blogspot.com for publishing multiple posts about brain atrophy in MS patients.
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On a side very cool note, after my interview last week, I was asked to participate on the American Board of Internal Medicine as a patient advocate.  I’m amazed and incredibly honored.  I can hardly wait to find out how I can help.
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Her Inspiration, Our Perspiration

Hands to Work, Hearts to God - A Shaker saying
Hands to Work, Hearts to God – A Shaker saying

It remains astonishing to me how memories from years ago continue to shape my perspective.  A decade ago, I went to visit Shaker Village in KY.  I was struck by how ahead of their time they were on many issues like racial and gender equality.  However, what has stayed with me was the motto “Hands to Work, Hearts to God.”

I thought about this last week when my wife suggested we take turns and shovel the sidewalk to the school.  There is about four tenths of a mile of sidewalk along a four-lane road many of the children at the elementary school walk.  It had not been shoveled on Tuesday when kids went back to school, and after falling a couple of times, A joined the throng of children walking in the road.  My wife and crew joined, but noticed how poorly unsupervised kids walk in one lane and how poorly people drive around the school in their hurry to drop their kids off.  So when I got home, she proposed we shovel the sidewalk in shifts with the other taking care of our kids at home.  As I shoveled, I thought of the Shaker saying. 

I will admit there was a side of me annoyed the school whom we support with our taxes and time along with the community association we support with our dues both passed the buck on shoveling assuming it was the other’s responsibility.  At a certain point, it just needs to be done.  That point was 8:45pm on Tuesday when we finished. 

I will also admit I liked working with my wife.  Her inspiration and our perspiration resulted in a safer path, and I like to think that metaphor fits our family life.  Who knows?  Maybe the memory of parents just making plans to do what needs doing without being asked or paid will stick with my kids.  Maybe they will not think of any one time or incident but rather the pattern.  That would be the ultimate compliment.

On the cool side, A made the local news this week.  We found out when a friend messaged J saying A looked good on the news.  The incident had not made an impression on her, but when we showed her she was thrilled…Of course her excitement was not for being on the news but rather because her “boyfriend” P was on the segment, and she was excited for him.

http://www.abc2news.com/news/education/elementary-school-incorporates-the-arts-in-each-subject-to-nurture-students-creativity

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Our Family's Stories of Growing Up

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