Saturday, June 26, 2010

Have you ever seen a Black Swan?

images The answer is yes. You have seen many black swans. Allow me to explain…

Most of us embrace the illusion that the things we plan for will actually happen, and that the events that so-called “experts” predict will likely come to pass. We behave as if we live in a world that is stable, predictable, and follows some set of rules. This couldn't be any further from the truth.

I recently read a compelling book on the subject, called The Black Swan, by Nassim Nicholas Taleb. He describes black swans as earthshaking events that are not anticipated, and that have far-reaching effects. Black swans can be public, like 9/11, or private, like a surprise pregnancy or a cancer diagnosis.  Black swans can be positive, like winning the lottery, or negative, like the financial crisis we are still recovering from.

Taleb explains that the events which have the most impact on our lives are not the day-to-day occurrences that we spend so much time thinking about and preparing for, but rather those catastrophic or wildly fortunate, completely unexpected events that we never see coming. This is not to say that we should ignore the little things that we can control, and wait passively for the wheels of fate to turn either in favor of us or against us. We need to be concerned both with the routine events of the day and the black swans.

imagesCASMP6M1 So if unpredictability, chaos, and pure luck rule the day, then why even spend time shopping for groceries a week ahead or completely filling your gas tank? The answer is, because we just never know how long it will be until the next black swan, or what form it will take.  It is difficult to prepare for specific black swans, but we can take into account their existence. Taleb's advice is to exert effort to minimize exposure to big, negative black swans, and increase exposure to big, positive black swans. Examples of minimizing exposure to negative black swans would be purchasing life insurance (for your spouse) and not buying a house in a flood zone. You can maximize your exposure to the positive black swans by looking for opportunities. Taleb says:
“Seize any opportunity, or anything that looks like an opportunity. They are rare, much rarer than you think. Remember that positive black swans have a necessary first step: you need to be exposed to them. Many people do not realize that they are getting a lucky break in life when they get it. If a big publisher (or a big art dealer or a movie executive or a hotshot banker or a big thinker) suggests an appointment, cancel everything you have planned: you may never see such a window open up again. I am sometimes shocked at how little people realize that these opportunities do not grow on trees….Work hard, not in grunt work, but in chasing such opportunities and maximizing exposure to them…you gain exposure to the envelope of serendipity…Diplomats understand that very well: casual chance discussions at cocktail parties usually lead to big breakthroughs- not dry correspondence or telephone conversations. Go to parties! If you're a scientist, you will chance upon a remark that might spark new research. And if you are autistic, send your associates to these events.”
Consider my own situation. I played by the rules. I got a good education. I worked hard in a variety of jobs. But what defines me more today than anything else is the fact that I have MS. This was a big negative black swan, that couldn't be avoided or predicted. I experienced another negative black swan when I found out that the iBOT, my advanced mobility device, was no longer being manufactured. On the other hand, my mother’s passing almost two years ago was not a black swan. Although it was tragic and had far reaching effects on me and others, it was not a complete surprise.

If the discovery of the connection between CCSVI and MS proves to be a key to understanding this damn disease, that discovery will, in retrospect, have been a positive black swan. I’ve exposed myself to that potential by undergoing CCSVI treatment, while not even knowing for certain if it will work.

Unlike previous Titanic films, Cameron's retel...
(Photo credit: Wikipedia)
I’ve spent a lot of time avoiding negative black swans, yet I can’t elude them all. My point isn’t that we should forsake college educations or refuse to draft five-year plans. I’m not advocating that we avoid buying the groceries a week ahead. But I wish that we would admit to ourselves that as a species, the most sophisticated and intelligent species on earth, we still have very little control and very little understanding of the complex ways of the world. It is simply beyond our grasp.

For me, this discussion about black swans is not at all troubling.  It represents an enrichment of our understanding of the world, even if that new understanding is that we don’t understand, or control, nearly as much as we thought we did.  I find this concept, and the truth it reveals, to be strangely liberating. 

The bottom line- spend enough time on the mundane tasks to stay above water, carrying on as if the future is predictable. Spend the rest of your time avoiding negative black swans and exposing yourself to positive black swans. And most of all, try not to be shocked if the completely unexpected happens. In fact, be shocked if it doesn’t.
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Sunday, June 20, 2010

The Evolution of Friendship

(Photo credit: Wikipedia)
It's the year 2000. My wife and I have decided to move three hours away from the only town my kids have ever known. It’s time to break the news to them, and we dread it, partly because “moving” was one of my great childhood fears, right up there with the boogieman in the closet. But our 8 year old, Zachary, didn’t inherit that phobia from me. I remember exactly how he responded to our news. "That’s OK, because I'll get to meet a lot of new friends, and I’ll be able to keep my old friends."

What Zach said is true. Well, sort of. Well, not really. Every time we have a major life change, like switching jobs or moving to another town, we welcome new people into our lives, but we leave other people behind. It’s as if we have a fixed number of friendship slots. If new ones come in, old ones must go out.

Some of our friends just gradually drift away after a major life change, not because they weren't important to us, but because the relationship succumbs to the erosive effects of time and distance- victims of the zero sum game I describe above. It’s rarely a conscious decision on our part. It happens outside of our direct control. That was the case after I stopped working a little over a year ago. I stayed in contact with some former coworkers. Others have begun to fade away, and I’ve also gained new friends.

Who are these new friends? I'm not working anymore, so how is it that I’m meeting people and building relationships? I’ve gone from interacting with dozens of people every day and traveling all over the country, to sitting at home most of the time. Thank goodness for the Internet. If I had gone on disability retirement 20 years ago I think I would've gone crazy from the boredom and loneliness.

In just the last decade or so, an entirely new type of human interaction has evolved, and the subsequent relationships often become meaningful, fruitful, and enduring. They start out as “virtual” relationships, but they can become very real over time.

I am active with several online groups having to do with multiple sclerosis and more recently with my iBOT wheelchair. My relationships with these people are like the close relationships I used to have with some of my coworkers. We share common goals. We get to know one another’s life stories. We talk “business” while sprinkling in conversations of a more personal nature. We support one another. We learn from one another. My life is tangibly better for having fostered these friendships.

Technology helps. I communicate with my online friends over the telephone, though email, texting, Facebook, Skype (perhaps the most intimate online communication platform), and several other methods. Last night I had my wife take this photo with my phone, and I emailed it to my new friend Michelle, with the caption, “Summer has begun at the Old Port.” I knew she’d appreciate the photo.  It took me about 20 seconds to make that quick connection to somebody three states away.


One of the advantages of online relationships is that they are not constrained by geography in any way. My friend Herrad, in Amsterdam, is an example of that.

I’m grateful for my online friends, and I appreciate the blessings they provide. It’s a particular thrill, though, when I get to meet any of these friends in person. Online communication is a wonderful substitute, but nothing replaces personal contact.

IMG_1345me with virtual friends turned real 

By the way, my son Zach didn’t keep any of his old friends from ten years ago. We kind of expected that, but there was no way we were explaining the realities of life to him on that fateful day in 2000. Childhood ignorance can be bliss.
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Sunday, June 13, 2010

Save the iBOT

Imagine for a moment that you can’t walk.  Don’t worry- it’s just pretend.  Then, imagine that one day you discover a device that gives you a higher quality of life and greater independence. Because of this device you once again go places and do things that usually only walking people can. You became re-integrated into the fabric of society, the everyday comings and goings of healthy people.  How would this change your life?

Then, imagine that after only a few years, the device no longer exists.

When we discover something that reduces human suffering and makes the world more accessible, it should not simply fade away because of red tape and bad government policy. But that’s exactly what is happening. The iBOT is fading away.

But there is a group of people working to change that. How can you help? First, join the Facebook group called Save the iBOT, which was founded by my friend Max Burt, an iBOT user from the UK. Soon, this group will be launching a website with more information about how you can join the effort. Once the new website is up and running, you’ll see announcements on Facebook and here at Enjoying the Ride.

Help us save the iBOT, because shouldn’t humanitarian progress be a one way street?

To read about my iBOT experiences, click here.

Soldier Gary Linfoot

Alan T. Brown, iBOT user and activist.

iBOT inventor Dean Kamen

Two videos of me in my iBOT:

Friday, June 11, 2010

CCSVI - MS Societies of Canada and USA Announce Research Grants

$2.4 million alloted by Canada and US MS Societies to study CCSVI.  Click here for Canadian report and here for American.

Tuesday, June 8, 2010

CCSVI Diagnosis and Treatment Log Entry #9 – 12 Week Update

IMG_1356 Everyone wants to know how I’m doing after my CCSVI procedure. The answer is…I feel exactly the same as I did before my visit to Dr. Sclafani.  That may sound like bad news, but maybe it is, and maybe it isn’t.

Some people are personally invested in my outcome because they know me and care about me. Others are following my story because I represent another data point in what has become a global, open laboratory experiment. Our collective lab notes can be found at CCSVI websites, on Facebook, Twitter, YouTube, TIMS, and at a place we affectionately call the Blogosphere.

So I sit here and wonder- have the blood flow characteristics in my central nervous system improved enough to alter the course of my MS? Unfortunately, I have no answer today. As soon as I do have a clue, one way or the other, you’ll be the first to know (well, right after I tell Kim).

Before trying to evaluate the success or failure of my CCSVI procedure, I decided to re-read my earlier blog posts, so that I could be reminded of what my expectations were. I’m glad I wrote them down, because expectations are notoriously fluid over time. Here’s some of what I wrote, from the oldest post to the most recent:
IMG_1348“…people like me who have already suffered significant damage to our central nervous systems will not see much, if any, improvement in our current conditions. We would simply stop getting worse. I need to stop getting worse, like, yesterday. Getting better can wait.”
“This concept has such upside potential that I find myself temporarily disinterested in all other MS research. For the moment, everything else is just so much background noise to me.”
“Given the speed at which my MS is progressing, patience puts me at more risk than taking early action does.  CCSVI remains my best chance to halt the progression of this disease before it completely consumes me.”
“Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.”
“No miracle changes on the operating table. It may take me many months to assess the impact. No matter the final results, it was a most interesting experience.”
“How am I doing, you ask? I’m doing just fine, thank you. Ask me again in six months or a year, and I may be able to tell you if this procedure had any positive effect on my disease progression.  Wouldn’t that be something?”
“Because it may be a long while before I know if this CCSVI treatment helped my disease progression or not, I’m unsure of how to comport myself. Should I carry on as if I’m cured or as if I’m still sick?
That’s a trick question. Forgive me. The answer is the same no matter the outcome of my CCSVI treatment. To the best of my ability I'm going to live my life one day at a time, hope for the best, prepare for the worst, and treat each day as if it could be my last. I encourage each of you to do the same.”
LIJV stenosis 01 Several themes stand out in these earlier posts. First, I had modest and realistic expectations. Although there have been many accounts from CCSVI patients about immediate improvements, as a person with advanced PPMS I had no expectations in that regard. I only hoped to stop the progression. Second, before I had CCSVI treatment I felt that it would take six months or a year to assess its impact. It’s only been twelve weeks. Third, even if I see no benefit from CCSVI treatment, I will not regret having tried.  

Since March 17th, I have seen no improvements. I expected none. Over the same time period I have experienced no disease progression. I expected none.  Twelve weeks is simply too short of a period to notice disease progression for me. 

There are two potential story lines, either one of which may be playing out right now:
  1. The procedure had no positive effect on my disease progression.
  2. The procedure slowed or stopped my disease progression.
azygos inflate 01 A third scenario may be overlaid on either of these though, just to complicate matters. It may be that the repair was not permanent. The stenosis that was opened using angioplasty may have returned (restenosis). I expect to have a follow-up visit with Dr. Sclafani at six months, which will be September of 2010, to determine if the areas of stenosis have remained open. I'll have this exam whether or not I believe my disease progression has stopped.

For me, then, it remains a waiting game. Is the uncertainty difficult to bear? Sure it is. However, it’s preferable to the grim certainty I would have faced if I had tried nothing at all (and 'nothing at all' is exactly the recommended course of action by many physicians and other experts, none of whom walk in my shoes).

Friday, June 4, 2010

My MS Story Chapter 39 – Making a Smaller Me

“When I buy cookies I eat just four and throw the rest away.  But first I spray them with Raid so I won't dig them out of the garbage later.  Be careful, though, because Raid really doesn't taste that bad.”  ~Janette Barber
Homer Simpson 2006When I stopped working last year I was at my heaviest all-time weight, and I worried that staying home all day was only going to make it worse. As it turned out, that wasn't true at all.  I didn’t become Homer Simpson.

I initiated a few self-improvement programs after my disability retirement, to keep me focused on what was important, and weight loss was primary among them. I had battled my weight to some extent ever since college. I still keep most of my extra weight right in my gut- just like my father and my two brothers. Damn genetics.

I had enjoyed some success over the years with Weight Watchers. I would lose 10 or 20 pounds, but every time I would put the weight back on after I stopped counting those “points.” So this time I needed a different program, if for no other reason than to somehow hold my interest. My friend Preston turned me on to It's very similar to Weight Watchers, in that you journal every bite of food you eat. Weight Watchers is a little more sophisticated, because it tracks calories, fat, and fiber. With, you count calories and nothing else- simple.

Thanks to I had a program in place to monitor my caloric intake. The other tool I needed was a method for measuring my progress -- a way to weigh. I called a bunch of local hospitals, nursing homes, and rehab facilities to ask if they could weigh somebody in a wheelchair. I didn't have much luck. Finally, Penny, the head nurse at New England Rehabilitation Hospital of Portland, returned my call. She had a rather old, but still accurate, chair scale.

Each Tuesday I visit Penny. I transfer from my wheelchair to the chair scale. Penny pushes a few buttons, and I get a readout of my weight. I’ve never seen a bill from her, and I’ve never been made to feel that I’m imposing on these busy folks. There are still some genuinely nice people in this world, and Penny and her staff are among them.

Other than caloric intake, the other factor in weight loss is how quickly you can burn calories through exercise. All of you walking folks may not realize how many calories you burn without even trying. The everyday moving about that you do at home and at work helps offset calories you consume. This doesn’t happen for me because I sit in a wheelchair. I do get some exercise on my hand cycle, but its net effect on my weight loss is negligible. For me, weight control is all about managing my caloric intake.

(Photo credit: Sidereal)
In the year or so that I've been tracking my weight I have dropped nearly 30 pounds. It hasn't been perfect though. There've been many weeks where I put on a little weight. There was a period of time around Christmas when my weight was quite flat for many weeks. It is no coincidence that over that same period I had tried to manage my weight without daily journaling. It’s also no coincidence that I love holiday food.

Over time, I have discovered a secret weight loss strategy, previously unknown to mankind. Drum roll please... does it have to do with phases of the moon? Is it about carbohydrates, fat, protein? Is there a magic pill? Is it a special exercise machine from an infomercial? Nope, it’s none of these. Believe it or not I found that there is an almost perfect correlation between the number of calories that I consume in a week and my weight on Penny’s scale. The more I eat, the fatter I get.

Armed with this secret, I am rarely surprised when I weigh in. All I need to do is review my calorie intake for the week, and I have a pretty good idea of what my weight will be. Amazing. I should write a book.

imagesThere are many diet plans out there, and so many gurus, that it can be frustrating for people who are trying to lose weight. In all seriousness, I think the most important thing is to keep it simple. You can't lose weight without keeping a diary of what you eat and measuring your progress (getting weighed) on a regular basis. Anything that deviates from this is likely a gimmick or fad. If you can throw in some regular exercise, that's all the better. But I'm convinced that the primary factor in weight loss is how much you eat, not how much you exercise. Exercise is important for overall good health, and it contributes to weight loss, but it's impossible for anyone to exercise their way to a slimmer body if they are not eating right. In contrast, I’m living proof that you can eat your way to a slimmer body even if you are not exercising much.

Controlling body weight is a challenge for people with MS, and for all people with movement disabilities. I encourage disabled folks to keep trying until you find a sensible program that works. If you are already working extra hard to move, because of a disability, then you’re not being fair to your body by burdening it with extra weight.

I hope I continue to be successful with my weight loss program. I’ve still got a way to go, but it feels good to have met with some success.

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