Category Archives: MS medication

brain training, MS medication, risk management, teaching kids how to think, Tysabri, Uncategorized

“One, Two, Many, Lots, and Whole Bunches!” – Life in a Base 100 World

I have always been told we use a base ten numbering system. I maintain we are a base ten times ten when it comes to absorbing the meaning of numbers.
I have always been told we use a base ten numbering system. I maintain we are a base ten times ten when it comes to absorbing the meaning of numbers.

There seems to be a logical disconnect in our brains when it comes to very large numbers. We have ten fingers and ten toes. We are fine counting to ten. When it comes to counting to 100, we don’t have big problem either. However, I note that I can put myself to sleep counting down from 100 by “1’s” or “2.5’s.” One hundred seems a natural barrier, and because we are a tens based society, ten times our natural barrier is still comprehendible. However, as we go further from hundreds our understanding of scale diminishes. When we start counting in thousands, we may as well go back to the childhood counting, saying “One, two, many, lots, and whole bunches!”

We can intellectually go beyond a thousand, but I note that when we do, we group things so that we are counting the groups again, never going beyond the hundreds. For example, 530,253,063 is said “five hundred thiry million, two hundred fifty-three thousand, and sixty-three.” We have kept our counting to the hundreds of a group. That seems a natural cognitive limit of our intuitive understanding.

I think this inability to think beyond hundreds inhibits some of our intuitive understanding of scale. I see this all the time even amongst those of us dealing with numbers all the time. At my work, a group of us play the lottery when the winnings are big enough for all of us to retire. We call it the “stupid people’s tax” because we all know the expected return for our money is nothing and we pay anyway. The odds of one in hundreds of millions feels like one in hundreds with the millions only understood intellectually.

It is with this in mind that I read much of the news about the Syrian refugees. I see reports where countries take in thousands or even tens of thousands, and it feels impressive for some group to advocate increasing the number of refugees from one thousand to ten thousand. It feels like the group advocating for ten thousand is much more heroic. I submit this thinking is at least partially the result of our inability to comprehend the number of refugees is estimated at 10.8 million. Again, we focused on the wrong parts when thinking about the scale of the crisis. Like the examples above, we thought about the numbers I underlined instead of the description after them. It is very hard to get to 10.8 million (number of refugees) when we are dealing with them a thousand to maybe ten thousand at a time. When I think about the true scale of the problem, it feels like the responses are akin to trying to put out California forest fires with one spoon full of water at a time. Some may bring the teaspoon while others bring a ladle, but how effective are either?

Don’t take this wrong, our minds inability to grasp large numbers has advantages. I take a drug that has a chance to cause severe brain infections and possibly kill me. The published odds I get on that happening to me are changing all the time. My neurologist asks at every visit if I am concerned by the odds and want to switch medications. My most recent numbers were one in seven hundred, and I told him again I will be concerned when my odds worsen to below one in two hundred. Above that, my mind treats the risk like the odds of being struck by lightening or dying in a car crash on the way to work. These things happen all the time, but the odds are not worth worrying about because my mind puts them all in the remote risk category. My minds inability to internalize the risk helps me live my day to day life. I justify my thinking about taking Tysabri by noting my odds are still better than a Cancer patient taking Chemo which has a mortality rate of one in two hundred. I do not think about the large number that is my odds of getting the brain infection. Rather I think about it in comparison to something else.

The comparison method is the only way I think most of us truly attach meaning to large numbers. This is what I am doing when I compare the mortality rate taking Tysbari with the mortality rate of a cancer taking chemo. When we release data on the United States economy, most people care more about the direction of the change in numbers and how fast they are changing rather than how big the actual base number was. Most of us really cannot intuit the GDP reports talking about trillions of dollars.

When it comes to large numbers, we just need to be careful to be mindful of what the large numbers are for which we see differences and the differences in scale between different large numbers. If we can manage these two obstacles, we might avoid some of the common mistakes in our perceptions of the universe in which we live. Maybe then we can stop comparing “many” to “whole lots.”

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appreciate the good life, chronic conditions, defining success, family picture, introspection, life well lived, life with MS, MS, MS cognitive function, MS medication, MS symptom progression, MS symptoms, Multiple Sclerosis, running, Uncategorized

Ten and Forty

This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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