Category Archives: Tysabri

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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MS, MS cognitive function, MS symptoms, pumpkin, red leaf branch, roses, Tysabri

80th Tysabri Infusion – What Happens When We Go Beyond the Studies?

Tomorrow afternoon, I will have my 80th infusion of Tysabri, a drug taken by infusion every 28 days to slow the progression of my MS.  For the past 2 years, I’ve been beyond the time period for which there is published data from any peer reviewed studies.  Heck, I just saw data released for likelihood of getting PML in your 6th year on Tysabri released in July.  This isn’t the most useful information as I go for infusion number 80, but I figure I will hear more about the 7th year in July next year.

Going through the garage today, J found some emails back and forth with my neurologist from back in my first year after being diagnosed.  Sometimes, it’s useful to see where I was to understand how much better I am now.  I was emailing about my massive headaches, coordination problems, neck sensitivity keeping me from wearing tee-shirts, and swallowing problems.  So with my following flare only two months away putting me in the hospital, this was actually a pretty close look at my life prior to MS.  I was dropping oatmeal in the cafeteria, unable to run, gagging with tee-shirts and any dry food, and miserable with headaches.  It was not my finest year.

Now, I am working full time, running, going to the gym, writing by choice, and generally in a much better spot.  I attribute much of this to Tysabri, and reading back how I felt before makes the odds of PML less concerning.  PML is one of the biggest risks when taking Tysabri as it leads to more disability or death.  Only people who have been exposed to the JC virus (60 percent of people in the U.S. have been) are at risk for PML.  I am in the 60 percent.  Still, when I started Tysabri, my wife and I agreed, “Give us 5 good years over 30 crappy ones.”  Eighty infusions into this treatment, I’ll re-sign the same agreement. 

This isn’t to say there has been no progression.  I am slower than I once was, and it feels like more than just age.  My ability to multi-task has taken a beating too, but all I have to do is look back to see a glimpse of what could have been.

Speaking of what could have been and may still be, I recently ran across mention of a study about cognitive decline in MS patients over 30 years.  http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-decline-over-30-years.html

As I read through it, all I could think about was interns syndrome where psychology and medical school students become convinced they have every symptom they read about.  I think I have some of the symptoms in terms of executive functioning and processing speed, but hopefully I still fall in the normal range.  The study does argue for treating MS aggressively to halt progression.  To date, Tysabri is still the gold standard for aggressive treatment of MS.

On the cool tangent side, we have a spot by our door where two rose bushes grow incredibly fast.  For years, I have told anyone who comments on them to feel free to cut any bloom they want because its replacement will arrive in a few days.  The bushes grow so fast we are always having to cut them back to clear a way to our front door.  We don’t fertilize them or anything like that, but we have thought of removing them.  We just can’t get rid of something which blooms nicely with no work on our part.

Last Halloween, O threw some pumpkin seeds from his the carving of Jack-o-lantern down off the front porch.  We thought nothing of it.  How many kids have spit seeds from various fruits?  I’ve never seen anything come of it until this pumpkin plant.  We’ve cut it back once already this summer, but the ground around the rose bushes most have some sort of magic.  I think Charlie Brown will be coming to our pumpkin patch next.  Maybe it just goes to show, one should be careful where one plants their seed (a lesson our son will need in a few years)….here’s what the plant looks like now:

Of course, I find the pumpkin plant to be the second most interesting plant in our yard right now.  At the beginning of this post, I had a picture I took looking up at a tree in our back yard.  I want to know why one of the patches of leaves is so bright red in amongst so many other branches of green leaves?  Magic?  Ours is a strange house some days. 

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