I am More than My Genes

I spend a lot of time thinking.

I think about things like what came before the Big Bang? If the universe is finite, then what is beyond its borders? How should I best take advantage of the gift of life? What is the allure of reality TV? What makes me me?

Consider that last question for a moment. What makes me me?

First, let's go back to the beginning.  I am the product of my parents’ chromosomes combining to create my unique DNA. Although we tend to inherit the traits of our ancestors, the process by which an individual’s genetic code is formed has a degree of randomness to it. What if things had gone just a bit differently on that fateful day when I was conceived? Would I still be me? What if Dad had decided to have one more sip of his drink?  What if Mom had to sneeze?  What if a butterfly flapped its wings in China?  If anything had changed that day, then the random process of my DNA creation would have been ever so slightly altered.

If I had blue eyes instead of brown, intuitively I would say that I am still me. Eye color is incidental to who I am, not essential. If I was 5’ 7” tall instead of 5’ 11”, I would still be me. But what if my IQ was 20 points higher or lower, my hair color was blond instead of brown, I didn’t have a genetic predisposition to MS, my build was slight instead of husky, and I tended to be rash and emotional instead of logical and calm? When, in this continuum of differences, would I cease to be me and become someone else instead?

Of course this is just a thought exercise, because I am who I am, genetically. My DNA does not change. It was established at conception. But I love to ponder questions like this, nevertheless. I can’t help myself.

Now let's look forward from birth, to try to answer the question “what makes me me?” My DNA is a blueprint for who I am, but because my body and my brain are also influenced by experiences and environment, my DNA does not determine exactly what I will look like or how I will behave throughout my life. For example, a person's DNA would not account for a missing finger from a lawnmower accident. A person's DNA would not completely account for psychological damage from abuse. So if we are more than our genes, then what are we, and what do we call it?

Sebastian Seung is an MIT researcher who is pursuing this philosophical question from a neuroscientist’s perspective. If these sorts of abstract mysteries intrigue you, you might enjoy the video, below. If you are too busy feeding the baby, looking for a job, or trying to figure out if your spouse is cheating on you, I understand and accept that you simply may not give a damn.

Note that this talk is designed for a general audience, not an audience of other neuroscientists.

If you did watch the above video, consider this with me. Since I have a brain disease, how has it reshaped my connectome? And if “I am my connectome,” as Seung hypothesizes, then who would I have been without MS? I’ll never know.
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CCSVI Alliance Update

You may recall that I volunteer a bit for a charitable organization called CCSVI Alliance.  What have they been up to?  They have been busy!

Seven months ago a small group of passionate individuals formed CCSVI Alliance with a clear mission: to educate patients with research-based information, to provide tools for patients to advocate for themselves, and to support the medical professional’s exploration of chronic cerebrospinal venous insufficiency (CCSVI).  CCSVI Alliance has accomplished much in its first months as a professional organization -- please see the summary below and share it!

Over the coming months they will continue to work hard as they complete their strategic plan, raise funds to enhance CCSVI Alliance and fund CCSVI research, and expand on existing efforts to educate patients and support medical professionals.

Your interest and support has been key to all that has been accomplished and I hope you will join in financially supporting CCSVI Alliance, inviting your friends and family to also contribute and continue to spread the word about their important work.  Donations may be made on-line at the "Helping the Cause" page of http://www.ccsvi.org/ or by sending a check to:

CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472

Here is the quick update on what has been accomplished in their first seven months together!

Educating Patients & Supporting Medical Professional Exploration

*      Launched website http://www.ccsvi.org/ on July 2011

• Original analysis of published materials for those new to CCSVI and those well versed (medical content reviewed by professionals)
• Exclusive interviews with professionals and patient profiles
• Comprehensiveness, design, and quality praised by patients and professionals worldwide

*      Brought together medical professionals

• Made connections across disciplines to advance research in CCSVI on behalf of Hubbard Foundation, International Society of Neurovascular Disease (ISNVD), and Society of Interventional Radiology (SIR)

*      Served as key resource for CCSVI community

• Met with professionals at the Annual MS Consortium meeting – June 2010
• Participant/speaker at the Symposium on Testing and Treating CCSVI, Brooklyn, NY – July 2010
• Guest member of Endovascular.org – participating in an interactive online forum focused on CCSVI where medical professionals learn from each other
• Asked to participate at the International Society of Endovascular Therapy (ISET) in 2011

*  Sharon Richardson, President, will be a participant in the town hall meeting along with Dr. Michael Dake, Dr. Salvatore Sclafani, and Dr. Paolo Zamboni.

Building a Professional Organization

*      CCSVI Alliance, Inc. – organized  February 2010; non-profit status received May 2010

• Legal documentation by Skadden, Arps, Slate, Meagher & Flom LLP (services donated)
• Branding and Identity by Onoma LLC, Identity & Media Design (services donated)
• Public Relations by Crenshaw Associates (services donated)
• Formation of Patient Advisory Board (PAB)
• Executive Director (TBA) – identified outstanding candidate based on consultations with other disease non-profit executive directors and Board members

In addition, the logo of CCSVI Alliance was recently recognized by an international expert in the use of identity as a tool in marketing and managing!  (For details visit www.identityworks.com/probono/CCSVI.htm.)  We are working hard to create a professional and respected organization that can promote CCSVI.

Thank you for all you’ve done to assist CCSVI Alliance!  We look forward to your continued support, input, and assistance in helping us reach our goals.

To read about my personal CCSVI diagnosis and treatment experience, click here.

I’ve Become an Expert Funambulist

From Dictionary.com:

fu·nam·bu·list [fyoo-nam-byuh-list]
–noun
a tightrope walker.

Those of us with chronic diseases hear conflicting advice on how we should best cope. On the one hand, we need to move beyond denial, accept reality, and make the best of our situation. On the other hand, we’re advised to never give up, stay positive, and hope for a cure. So which is it?

In my humble opinion, and I have some experience now in this regard, people with chronic diseases need to do both. They need to prepare for the worst by accepting their condition and making the most of whatever time and/or abilities they have left. But wait! Simultaneously, they need to hope for the best by remaining open to new treatments and staying abreast of current research. Walking the fine line between accepting reality and hoping for a miracle is a precarious balancing act.

A well-intentioned friend said to me a few months ago, "If you don't have hope then you have nothing, right?" I had to disagree. Although I still have hope, I don't think I rely on it. If I had no hope that my condition would some day stabilize or even improve, I wouldn't necessarily be left with nothing. I would be left with acceptance, and that's something.

Here’s another high wire act I’m navigating. I've chosen to write this blog in order to raise awareness of the issues facing people with disabilities. So I need to be sincere, forthright, and sometimes even blunt. Beating around the bush or painting a falsely positive picture won’t convey a clear message to the readers. Yet, there is a line that I don't want to cross.

On the one hand, I am compelled to lay bare the unadulterated truth about disabled life, or at least my disabled life. On the other hand, one of the least admirable of human traits is self-pity. I hope I've provided enough commentary here about my intent to live a positive, useful, and even happy life (to the extent possible), that my circumstances do not come across as miserable. Even my parenthetical statement in the previous sentence raises the self-pity red flag, but I'll ignore it. This is indeed a fine line.

Here's a third high wire act of mine. Throughout the day there are several activities that are more difficult for me to perform than they used to be. These activities are congregated around the morning and evening time. Getting up, taking care of my grooming issues, dressing, and generally preparing for the day are no small tasks. Then, in the evening I have to undo what I did in the morning. There are certain steps that I still complete with ease. Other steps I can no longer complete. But the steps I'll address here are the ones that I can sort of still complete.

Take for example, removing my trousers. I can unbutton them okay, and I can stand for the 2 seconds it takes to get them down from my waist to below my knees. Then the fun starts. Since I can't move my legs, how do I get the trousers that are bunched around my ankles all the way off? I’ve devised intricate steps where I inch the trousers off little by little until I reach the point where I can just pull on both pant legs and complete the task.

Some days this goes well, and some days this goes poorly. Maybe Kim is standing nearby, and maybe she is elsewhere. On the one hand, I want to remain self-sufficient. On the other hand, I can become frustrated, and it is so easy to ask her for help. I walk the fine line with my trouser removing, and with 100 other tasks, between trying to maintain my independence and knowing when it makes sense to ask for help. The kicker, with a progressive disease, is that the line keeps moving. Oftentimes, a task that I am able to complete today, I’ll struggle with tomorrow and forever after. Imagine a tight rope walker uncertain of exactly where his next step should be.

Those are just a few examples of how I’ve become such a proficient funambulist, but not the kind that anyone would pay money to see. My high wire acts do not entertain spectators, yet they are no less perilous than the ones carried out by circus performers. Maybe I’ve got it all wrong. Perhaps I could sell tickets for people to watch me conduct a Google search to determine if Bee Sting Therapy is a cure or a scam, look over my shoulder as I proofread my blog drafts, or sit on the edge of my mattress and watch me struggle to put on my flannel pajamas?

Or maybe a reality TV show...cameras stationed all over my house.  I'm calling the networks.

CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

“The truth does not change according to our ability to stomach it.” - Flannery O'Connor

Here’s a bit of truth: CCSVI treatment didn't work for me.

I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.

This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.

So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.

Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.

I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.

What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.

If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.

I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence. 

Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.

Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.

Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.

And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.

CCSVI- Can’t We All Just Get Along?

“A fact is a simple statement that everyone believes. It is innocent, unless found guilty. A hypothesis is a novel suggestion that no one wants to believe. It is guilty, until found effective.” - Edward Teller

There are so many human dynamics at work in the CCSVI debate that sometimes it makes sense to step away from the fray and consider it all in a detached manner, as a disinterested party (which I’m not). There are several stakeholders in the discussion:

1.  First and foremost are long-suffering and often desperate patients, who accumulate irreversible neurological damage on a daily basis, and who are justifiably frustrated with the medical status quo. Many of these patients find that certain medical experts treat them in a condescending and patronizing manner, all in the name of protecting patients from their own folly.

Within this patient population are two subsets: aggressive patients who are willing to take various amounts of risk and push the envelope, and conservative patients who wait for definitive proof before proceeding. I respect both positions, although I gravitate towards the aggressive approach myself.

Caregivers and loved ones are part of this first group as well.

2.  Next are the traditional medical professionals and the organizations that they hold sway over. These experts have seen so many obscure theories come and go over the years that they consider it their duty to rise above the hype, remain professional, and demand objective analysis. They see themselves as guardians of reason in a sea of irrational exuberance (to borrow a phrase from Alan Greenspan). They feel that this role is particularly warranted for unpredictable, incurable conditions like multiple sclerosis, which wax and wane by nature, and are particularly susceptible to placebo effects.

In their steadfastness, however, these medical professionals sometimes lose their capacity to consider new possibilities. They are not bad people, but by maintaining their prudence they surrender their passion.

3.  And finally, there are progressive medical professionals willing to consider the possibility that the accepted model of MS as an autoimmune disease may be flawed, and that alternative explanations are possible, even probable. This open-mindedness could be considered a reckless career move if the current understanding of MS was robust and produced successful treatments. However that is not the case – not even close. These pioneering doctors and researchers are fast becoming heroes in the MS community.

As I try to play the role of impartial CCSVI spectator for just a moment, which I’m probably failing miserably at, I must acknowledge the level to which this debate has sunk. Stated positions are sometimes as disingenuous and baseless as political commercials on television (the standard-bearer for mindless debate). Sometimes desperate patients are driven to make unreasonable statements. Highbrow doctors are dismissive of patients, of progressive doctors, and of new ideas. Insults fly. People become entrenched in their positions. Protecting turf becomes more important than treating patients. The ultimate goal of reducing human suffering becomes subordinate to winning the argument.

Why can't we all just get along?

I suppose it's simply not human nature to do so, particularly when lives and careers are at stake. How sad.

But once in a while a rational voice rises above the fray, like that of R. Torrance Andrews, MD. In his two-part lecture, Dr. Andrews dispassionately addresses the current state of CCSVI, why we need more research, and why the choice about whether or not to pursue treatment is a patient/doctor decision (as opposed to an insurance company decision, an Institutional Review Board decision, or in the case of our Canadian neighbors, a federal government decision). If you only listen to one CCSVI lecture this year, make it this one:

For more of my posts on CCSVI, including details of my treatment experience, click here.

For a comprehensive overview of the relationship between CCSVI and MS, visit ccsvi.org.

25 Steps to a Happy Life (part 2 of 2)

In the previous post I introduced my "pearls of wisdom," presenting and briefly discussing the first 10 items on that list. Here are the remaining items:




11. Speak kindly; refuse to engage in hurtful speech. Act kindly; refuse to engage in cruel activities. Think kindly; refuse to engage in mean thoughts.

Of these, “speak kindly” is the most often ignored. Think how many times you’ve been with friends and someone has spoken poorly about a person who was not present. I still get caught up in that sometimes, but I’m improving. I’ve grown to find these conversations boring.

The most challenging of these is to “refuse to engage in mean thoughts.” Although I consider this is a worthy goal for purposes of maintaining inner peace, our unexpressed or un-acted upon thoughts have little impact on others. Our words and actions are what count.

12. Let stuff go. Just let it go.

We spent so much time rethinking and regretting our mistakes, and the mistakes of others. We need to just let stuff go, and move on – no small feat.

13. You have no control over the behavior of others.

As someone who has been a husband, a parent, and a manager for much of my life, I can attest to both the truthfulness and frustration of this statement. We want to believe that our influence over people will result in behavioral changes in a direction we desire. This happens once in a while, usually not because it's what we want, but because it's what the other person wants.

14. Replace “I don’t have time for that” with “that is not a priority,” and see if it still holds water.

Although it doesn't seem this way, we all have a lot of time on our hands. We just have difficulty managing it. Ideally, we spend adequate time on our highest priorities and less time time on our lowest priorities. Most of us, myself included, fail miserably at this allocation task.

When you say that you don't have time for a certain activity, in essence what you are saying is that this activity is not a priority. In an effort to make sure that you are not avoiding high priority activities under the guise of not having time for them, try substituting the phrase "that is not a priority" when you would usually say "I don't have time for that," and see if it still makes sense.       

15. Serve others.

I'm certainly doing more of this now that I have abundant time on my hands. I manage my daughter’s college expenses for her (student loans, etc).  I help out with a nonprofit called CCSVI Alliance.  I take time to share my experiences as a disabled person at this blog.  “Serve others” is a concept that pertains to close, personal relationships as well as to society in general.

16. Forgive others.

When you forgive others their transgressions, you're not only making their lives better, but your own as well. Carrying around anger and seeking revenge are high prices to pay for someone else's mistake.

17. Do one thing at a time.

This is a requirement of mindfulness. Stop multi-tasking. Ha! Try to sell this concept to anyone under the age of 30.

18. You are not in charge, but you are not helpless either.

It is liberating to admit that we cannot control events or others reactions to those events. Yet, it would be unsettling if we thought we had no influence at all. We have influence, but we must accept our considerable limitations.

19. Suffering is caused by attachment to desire. Desire is wanting something you don’t have.

Again, this flies in the face of modern American culture, where the object is to keep up with the Jones, or to die with the most toys. It's a senseless game. Study after study has shown a weak or even negative correlation between material possessions and happiness. On the other hand, I’d rather be rich and miserable than poor and miserable (or does that statement only reveal my lack of understanding of this concept?).

20. Envision an outcome, only in order to set a direction. Don’t invest in the outcome; invest in the process.

Outcomes are often outside of our control. However, the processes that we employ in order to move toward a goal are within our control, and it's the processes themselves that often provide fulfillment.

21. All we have is right now. Live it!

As someone with a highly uncertain future, staying in the moment is deeply important to me, and something that I work on constantly. I try to live each day as if it could be my last. Of course as a matter of practicality, this is impossible. But it’s the process of working toward this goal that matters.

22. You only have so much capacity for empathy. Conserve it for the important stuff. 

The best way to stop feeling bad for everyone’s misfortunes is to stop watching television news. At least 50% of the local and national news is designed to make you feel bad about stuff: accidents, fires, wars, global warming, recessions, starving children…there is no end to it. If you at least get your news in the paper or online, you can skip over the items that you don’t need to be concerned with. Yes, the world is full of horrors, but being reminded of that in daily doses at 6:00 in the morning, noon, and 5:00, 6:00, and again at 7:00 in the evening is not helping you to lead a happy life.

For a wonderful discussion of the evolution of "empathy," click here. 

23. Spend time with people who are different from you.

And do that with an open mind. See what you can learn from them. Consider the possibility that your culture, or your circle of like-minded people, may not have everything right.

24. Be creative and have crazy ideas. Take risks.

You only get to live life once, and as one who is beyond the halfway mark, I'm here to tell you that it goes by fast. If we spend all of our time in our comfort zone, never venturing outside to consider new ideas or push existing boundaries, then we’ve wasted a precious opportunity. Dare to be creative. Entertain crazy ideas. Don't be afraid to take risks. Remember to forgive yourself, and forget the pain, when you fail. I'm convinced that life is so much more enjoyable when it is lived this way.

25. Life hasn't promised us anything. Life doesn’t owe us anything.

The odds are so incredibly stacked against any individual actually being born. Consider the chain of events that lead to your birth. Every direct ancestor of yours had to survive childbirth, live to at least puberty, and successfully procreate.  The offspring of that activity then had to meet with the same success. This had to happen innumerable times, and it had to happen to a great extent before the advent of modern medicine. Not one single ancestor broke the chain of success.

For much of human history, the odds of this success were poor for any given individual, let alone for an entire line of ancestors. When you think about it this way, we are so extremely fortunate to have ever been born that life doesn't owe us anything at all. Just by having been born at all, we are forever indebted to life. This renders every day and every experience a bonus, a gift. If you enjoy one day of happiness or 100 years of it, you win.

26. Pick up after yourself.

27. Stop being such an asshole.

The last two items were added by my wife.