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good life, information, introspection, life with MS, Living Well, love, Love and Chronic Illness, Rainer Maria Rilke, Uncategorized

Looking Back To Better Plot Our Future

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K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It's a walk she does all the time. Sometimes, we don't have to know or be able to see the details to know where we want to go.
K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It’s a walk she does all the time. Sometimes, we don’t have to know or be able to see the details to know where we want to go.

We are all blind to the future.  Our ability to predict is limited to extrapolating from what has happened recently.  So often, living with a chronic, progressing  condition requires us to make the best choice we can with the information at our finger tips.  If we are introspective enough, we may look back to see the clearest path to better light the way for those behind us.

This past week, I was lucky enough to read about two such reviews of past events.  One was an MS study looking at the impact of delaying treatment of MS by 3 to 5 years versus beginning treatment immediately on deaths due to “MS complications” over 21 years.  The other study was a study of Harvard graduates over 75 years in an attempt to discover what men need to be happy.

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http://multiple-sclerosis-research.blogspot.com/2014/03/cause-of-death-on-interferon-beta.html

On the MS study, it was conducted from 1990 to 2011 looking at the effects of early treatment for MS patients with interferon-beta.  Realize, 1990 was the beginning of a decade which brought us many advancements in MS care, and care for MS has come a long way in the last 20 years.  For the trial, half the patients were given interferon-beta, and the other half were given a placebo.  After three years to five years, the placebo group received  interferon-beta.  I know it is often said to patients, “ MS is not fatal.”  However, of the 69 patients who died in the intervening 21 years, 78% were judged to have died from “MS related complications” including such things as swallowing problems leading to pneumonia, urinary dysfunction leading to UTI’s and septicaemia, falls with fractures, etc.    The mean age-at-death was less than 52 years for the participants who died.  Those in the placebo group experienced an excessive number of MS-related deaths. 

Keep in mind, interferon-beta is less effective than many front line MS treatments now.  In the past, I have advocated against the strict use of dots on an MRI determining the efficacy of an MS treatment.  I want some measures of mobility and cognitive ability to assess whether a drug works.  There have been a few studies casting doubt upon whether our current front line meds work  in terms of preventing disability, but living or dying of MS complications seems like a great measure of drugs efficacy.  The biggest hurdle to using it as an end point is the time it takes to learn the truth.  This was a result from 21 years of patient data.  Still, it seems this study shows the value of dealing with MS as best we can, as soon as we can.  The failure to do so might just kill us, even if we do not understand the exact mechanism by which slowing our MS prolongs our lives.

To my mind, it comes back to my old motto, “Do what you can when you can until you can’t.  Then go to bed knowing you have done all you could, and tomorrow will arrive anyway.”    As I read this study, the ending could be changed to “…OR tomorrow’s tomorrow  may not arrive at all for you.”

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http://www.feelguide.com/2013/04/29/75-years-in-th-making-harvard-just-released-its-epic-study-on-what-men-require-to-live-a-happy-life/

The second study, the one of Harvard graduates, began in 1938 began with over 200 Harvard men and tracked them into their nineties, well beyond traditional retirement years.  It tracked a huge number of variables from political leanings to social lives to various physical conditions.  The study is fascinating if only to track a cohort of men through their lives. 

It’s not exactly a representative sample. The  sample isn’t just college educated men. It’s men privileged enough to go to Harvard. When it talked about the drop in average salary from bad choices, I kept thinking my grandparents would have liked to have a salary big enough to have so far to fall. However, I think many of the points likely apply to us all. Drink and drugs were the mostly likely to derail a good life. The warmth of our relationships in large part determine our happiness, and our health in old age is mostly determined by our decisions and habits as adults not our genetic make-up.

I think of this study with respect to MS, and it is a bit terrifying.  According to the MSresearch blog, MS patients are twice a likely to divorce as healthy people.  Many MS patients become clinically depressed.  So often our ability to relate to health fades.  I no longer remember what it is to be without pain, to be clear headed, to feel strong.  Maintaining warmth in our relationships is a challenge to all sides.  Yet, I can tell you the warmth of my relationships maintains me and my peace of mind.

I would like to think some of my habits will help me as/if  I age.  In the study men’s old age health was better linked with their choices than their genetics.  Towards that end, what began with taking stairs rather than elevators has progressed to running and rowing three or four days a week.  My family has a history of heart disease and cancer, but if one believes this study, what I do matters more.

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As I thought about these two studies this week and doing what seems best with the limited information I have when I don’t have all the answers, I think of this quote:

“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

Rainer Maria Rilke, 1903

Maybe these two studies will let us see a tiny sliver of the answer.  If we are lucky, maybe we will live our way to the next peace of the puzzle.  If we are truly fortunate, we may even have a  chance to light an easier path for those who come after us.

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Black Swan, good life, learning, MS, MS treatment, Multiple Sclerosis, story, Tysabri

1,001 Days in the Life of a Happy Turkey Story

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As I am listening to The Black Swan, The Impact of the Highly Improbable  by Nassim Nicholas Talebin my car on the way to work this past week, I keep finding myself engrossed in analyzing where I think the logic a novel way to look at the world and where I find the logic lacking.  I can not help it.   Being raised sitting at a dinner table with a physicist questioning every assertion I made as a know it all teen, I have been trained to question all logic presented to me.  As the title of the book implies, it is a book looking at the many instances when the one outlier event is more important than all of the preceding and following events.

One of his examples is the 1,001 days in the life of a turkey.  For the first 1,000 days of the Turkey’s life, the farmer is the good guy.  In fact, he might be the best guy in the whole world because every time the turkey sees the farmer means he is about to get fed.  Unfortunately for the turkey on the 1,001st day, the farmer has come to begin the Thanksgiving celebration preparations.  The 1,001st day is the black swan event for the turkey because it completely changes how the first 1,000 days should be viewed.  The farmer was not providing food because he wanted to make the turkey happy.  He was doing it to fatten him up.  Because the Thanksgiving massacre could not be foreseen by the Turkey with the knowledge/experience, it had and the result had such a large impact on the turkey’s life story, it met the author’s definition of a “Black Swan event.”

One of the central points in the book involves one of my favorite topics, perspective.  In the book, Taleb points out the problems with narratives as one of the things we should watch out for in our decision-making.  For days 1 to 1,000, the turkey’s view is highly reliable, and all of the other animals on the farm should be listening to him.  It is the 1,001st day that shows how wrong he was.  If one takes Taleb’s parable to heart, one would think the turkey better off never to trust the farmer’s food in the first place, and the other turkeys most certainly should not listen to the first turkey.  Instead, they should be mindful of the story of the 1,001st day.

I try to take this story to my MS treatments.  I have been on Tysabri for 7 years, and it has been a quality of life saver for me.  If one were to read (too much in my opinion) into the turkey story, one would be hearing all kinds of warning bells.  I will grant in the truest sense it would not be a black swan event because I can conceive of the possibility of getting PML (a potentially fatal brain infection).  Still, what if one simply lumps PML with all the other things known and unknown which may go wrong taking a drug for longer than the duration covered in any published study?   I do not pretend to know all that may go wrong.  When I want information of the unpublished variety on drug outcomes, I have only the stories of patients on sites like patientslikeme.com.

What I know is like the turkey during the first 1,000 days, I am currently happy and thriving.  When I started taking Tysabri, it was newly reintroduced to the market after being pulled for causing PML resulting in patients’ deaths.  Still, other treatments had failed to abate my increase in symptoms.  Therefore, my wife and I came to the decision, “Give me 5 good years over 30 crappy ones.”  Nobody is promised the 1,001st day.  For that matter, nobody is promised tomorrow.  In this light, I think the logic of worrying about the black swan events fails when confronted with a known medical condition for which there is no “cure.”

Now, I as I listen to the rest of the book, I am keeping in mind two facts:

First, nobody should stay on Tysabri for 7 or more years simply because I have survived.  To do so would be to fall for one of Taleb’s unseen biases.  Reading from all those who have thrived on the drug and deciding to go the Tysabri route for MS treatment with no further research is to ignore all those who would not write because the drug either didn’t work for them or killed them (preventing them from writing about it).  So deciding based on my blog and others like it may be and probably is unwise.

The second logical problem I keep running into is my minds need to create stories to better understand the why and how for things in my life.  I note even in a book that seems to decry the prevalence of storytelling, the entire book is full of one story after another to illustrate his points.  I think he is correct about the dangers of reading too much into stories because the “how and why” are all subject to the perspective of the storyteller.  As one of my teachers said in high school, the victors write the histories.  However, even they do not always know the truth behind why they won.

Still, without stories, we are left with only statistics.  Ironically, pure math misses as many truths as relying solely on story telling.  I will never forget arguing with my calculus teacher in college over the answer to her word problem as she insisted the answer was “The bus can carry 19 and 2/3 people.”  She marked my answer of 19 wrong insisting if I was going to round the number, I should have said 20.  I told her I knew of no “2/3 person” and in fact, I knew of no “partial people” since our country tried to cut ties to racially and gender motivated ways of counting people.  It was probably as much my attitude as my answer making her dismiss my answer as wrong refusing to give me credit.

So with this in mind, I come back to Tysabri and the turkey.  I continue to take it because it makes my life now better.  Sure, the odds seem to get a little worse with every new set of statistics, but those are numbers.  They don’t say anything about my ability to hold a full-time job, parent kids who need me, run a half marathon or any of a hundred other things I can now do which I probably could not if my former MS course had been unaltered.  I may have my 1,001st day in the life of a turkey, but it will be after having lived for the full 1,000 days.  I prefer this to the life of the turkey who chooses to live always hungry, always wanting.

I note Thanksgiving does not come at the 1,001st day of every Turkey’s life.  In my case, I hope Thanksgiving comes 2 months after I die comfortably in my sleep of old age having lived the life of a happy Turkey eating whatever my fate provided.

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