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dog picture, emotion, happiness, happy life, MS, MS stories, perspective, statistics, Uncategorized

Two Views of Same Data on Life Expectancy

A Dog's secret to a long happy life...play hard and find a good teddy bear with whom to sleep. Could it be that simple?
A Dog’s secret to a long happy life…play hard and find a good teddy bear with whom to sleep. Could it be that simple?

Do Numbers Lie or mislead? I suspect we just read into them what we expect “truth” to be.

When I started as a Survey Program Analyst almost 16 years ago, I remember working on some politically sensitive data. My boss said in a somewhat cynical tone, “Tell me what you want to prove, and I can find the statistic to ‘prove’ you correct.” Since then, I have enjoyed running across those statistics which can be used for either side of a disagreement as “proof.”

I was at a healthcare bazaar at my work last week where different supplier came to sell their services. There were insurance companies hoping employees would switch to their insurance or perhaps sign up for the first time. As I walked around, I watched their interest in selling to me predictably fade quickly with the mention of my MS. It was like the Soup Nazi in Seinfeld, saying “No long term care insurance for you.”

I get it. Still, I did have some interesting conversations there. It is enlightening to see how caught up in rosy narratives we become when faced with numbers that may say what we want to hear. One of the employee assistance plan workers told me the story of one of his friend being diagnosed with untreatable cancer. The doctor told him and his family to do what they can to make the patient happy because studies show “Happier sick people live longer.” The worker and family took this to mean if they can keep the patient happy he might beat the cancer. This narrative assigned to the facts of less happy people dying quicker gave them power over that truth which they would otherwise be forced to just endure.
I guess I was a Debby Downer, because I pointed out the other “obvious” to me possible explanation for the numbers. Sometimes being really sick and dying is just miserable. Perhaps some of those unhappy people were unhappy because their illness was so miserable to endure, and it was killing them whether they were happy or not? Without knowing what made the people in the study unhappy, it is hard to say why the unhappy people died quicker.

To my, ignorant of the individual facts mind, the narrative where sick unhappy people die sooner than happier ones, suggests a bleaker mindset closer to death. This seems more plausible than healing by positive thinking. I think about the symptoms I am to watch for as a JCV positive patient taking Tysabri. I am supposed to watch for down turns in my mood because they could be a harbinger of PML. Will my happiness ward off PML or is will a darker mood be a canary in the mine?
Maybe I should worry that mind so readily dismisses my mood as a cause of my body worsening. Perhaps I am already doomed.

Of course, I have few objections if my family and friends want to make me happier all the time so I can live longer. Maybe I should start an Emotional Go Fund Me and see how much positive energy is directed my way?

The happier patient population living longer could also be a result of the body having to spend less energy enduring symptoms. I know my symptoms are worse when I am stressed. Of course I also stress over increases in symptoms. I will concede it is plausible that happier patients live longer, but which is the cause and which is the effect in the relationship between happiness and long life is undetermined in my mind.

One happy bear scout
One happy bear scout

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dog picture, Exercise for the sick, family picture, half marathon, MS, running, self confidence

Never Slow Down…Never Grow Old

There is a phrase I’ve heard many times when it comes to finding the ideal diet or workout, and I still find it true to the point where I chuckle every time I see an ad or commercial for a new miracle diet or exercise plan.  I believe the truth is in the quote, “The best diet/exercise plan is the one you will actually follow.”  It would seem to go without saying, but invariably there will be people who think the biggest loser lifestyle is for them…right up until lunch of the second or third day or even week.  It’s only the lifestyle changes which work.
Twenty months ago, I was 242 pounds on a work trip to Guam and CNMI.  During the first stop in Guam, I tried to run a mile despite all the hills surrounding our hotel.  With a lot of walking, I finished in just over fourteen and a half minutes, and I felt like death.  I was surprised because I have taken the stairs at work to the 6th floor where my desk is four or five times a day for years.  
Taking the stairs was my silent rebellion against the leg weakness I felt creeping in from my MS.  Having played 20 years of soccer, I had been able to leg press the stack of weights since college.  So I convinced myself if MS was to steal 3% of my strength, maybe climbing 120 stairs a day would slow the progression to 1% a year.  I was actually sprinting up them to the 8th floor every morning…and yet here I was trying to run a mile and having a lot of difficulty.
I’ve always thought my self an athlete, not a jock.  An athlete is one with enough physical ability and enough awareness to be able to learn to compete in any sport.  It was always a point of pride for me to be amongst the first chosen in any physical education event and still be the same guy who plays chess on days when there was no soccer or basketball.  As somebody who thinks themselves an athlete and has played soccer for 20 years, not being able to run a mile was unacceptable even with it being a mile of hills.  I know there will come a day when MS makes me accept it, but the day has not yet come.
So twenty months later, I ran two miles in 14 minutes 22 seconds.  This weekend, I will try to run a half marathon, a goal I had on my bucket list created during the process of being diagnosed with MS.  I had almost given up on the goal as the only cardio I could really do was row on my concept 2.  My balance was so bad I fell often, and I decided it was far better to fall 6 inches and get back on it rather than run and fall.  Alas, the rowing comes back to the first point of the best exercise plan is the one followed.  It became too much trouble to clear a spot, take out the rowing machine, work out, and then put everything back.  I just wasn’t doing it often enough.  Hence, between that and steroids for flares, my weight went from 202 when married to 242 lbs.   
Now as I prepare for this weekend, I’ve come to realize whether I accomplish my half marathon goal this weekend or a future one, the exercise plan of training for it has been the best one for me.  Twenty months later, I am back to 195 lbs.  I have far more energy, and I’ve found the running has helped with the spasticity in my legs and back.  I still fall some if I move my head quickly or go from standing to sitting too quickly once I am warmed up during my runs.  Most of the falling though is from fleeting blindness, and I’ve gotten pretty good at training myself not to trigger it.
 Succeed or fail this weekend, I’ve already won.  While I know my body image isn’t what determines my success, the me I see in the mirror is one I appreciate more.  While not quite a source of self confidence, at least I no longer feel as betrayed by the body I see in the mirror.  The images above and below show how I measure my success, but still I look at the pictures I took of myself in the mirror at the hotel in Guam after the run when I need to motivate myself to run.  It’s a plan I follow, and what I originally had as an end point will likely be just another milestone.

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