I am More than My Genes

(Photo credit: Wikipedia)

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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I’ve Become an Expert Funambulist

(Photo credit: Wikipedia)

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.

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. 

25 Steps to a Happy Life (part 1 of 2)

(Photo credit: Steven Betts)

…or something like that.

Although my progression from a healthy person to a handicapped person was slow and steady, my transition from a working person to a legally disabled person was abrupt, like jumping off a cliff. One day I was working. The next I was retired, probably for life, at age 45. That’s just the way the system works. I’m reminded of the old saying, “It's not the fall that kills you; it’s the sudden deceleration at the bottom.” I was decelerating in a hurry.

But it didn’t have to be that way. This transition was an opportunity for me to reevaluate what was truly important, and consider how life should best be lived. I had a lot of time on my hands to ponder such intangibles, so naturally I came up with a list. I’d like to share this with you, not because I think I have it all figured out, but because I have the time for this type of introspection, and maybe you don’t.

I call the list my "pearls of wisdom," and I review it on a regular basis. I don't simply read down through the list, but instead pause at each item and ask myself, "How am I doing on this issue?" As you might expect, I'm doing well on some and not so well on others. This is a living, breathing list which I update frequently. It’s not perfect, and I know that it’s missing some wonderful pieces of wisdom, but I find it helpful nonetheless.

You may notice that many of these items are borrowed from Zen philosophy. I regard Buddhism as a bizarre religion, yet within it I’ve found many practical lessons for enjoying a happy life. Here's my list, with some commentary:

1.  Eliminate physical and mental clutter in your life. Simplify, simplify, simplify.

I surround myself with gadgets. I have computers and phones of all shapes and sizes. I have televisions and MP3 players and DVD players. I have stereos and indoor/outdoor thermometers and a robotic wheelchair and so many more things. I'm addicted to techno-crap. I know this isn't good for me, but like a heroin user, I crave my next fix.

    I don't know if I'll ever get better at this, but I put it on my list in hopes that one day I will.

2.  Live fully in the present moment. Do not dwell on the past or the future.

It is so natural for me, and I’m guessing for you as well, to replay past mistakes and regrets over and over in my mind. Also, I continuously look forward to the next significant event on my calendar- a trip, party, sporting event, etc. My mind shouldn’t be focused on events of the past or future. Instead I should be concentrating on the here and now.

3.  Work on being mindful all the time.

To be mindful means to be totally focused and engaged in what is happening around you at the moment- not distracted with thoughts about anything else. Take notice of everything- the sights, smells, tastes, sounds, and feel. Don’t let your mind wander from the task at hand (no matter how boring it might be).

4.  See each incident for what it is and don't carry any expectations forward to apply to any other incidents.

Human nature compels us to identify patterns, even where none exist. “Because he was mean to me once, he will be mean to me in the future.” Or, “Because this person of such and such heritage was lazy, all others of his heritage must be lazy too.” Well, maybe these statements are true, but quite likely they are not. Our tendency to over-generalize results in missed opportunities.

5.  You have already succeeded. You are where you are supposed to be. You have nowhere to go. You are already there.

This concept flies squarely in the face of modern American societal norms. We are all about self-improvement, identifying our weaknesses, re-inventing ourselves, etc. Yet, this item suggests a completely different tact. I can’t quite accept it as written though. Maybe there is some happy medium, where we are not totally complacent, but neither are we obsessed with self improvement.

Interestingly, this piece of Zen wisdom is inherently contradictory. If I am already where I need to be, then why am I studying Zen philosophy and seeking higher wisdom? Interesting paradox… 

6.  Live a life without apology (except when you truly have something to apologize for).

My friend Katja turned me onto this article:

    http://www.peertrainer.com/how_to_live_without_apology.aspx

This is a different way of stating the Zen concept in item 5 (You have already succeeded. You are where you are supposed to be…). In this case the author of the article talks about how we don't need to seek other’s approval, and apologize when we don't meet their expectations. Excellent concept.

7.  Give your feelings a chance to happen. Hear them out and then let them move on. Do not let them control you. Your thoughts and feelings come and go. They are not you.

This all makes sense to me, sort of. We can't be consumed by our thoughts and feelings. Yet, if we are not our thoughts and feelings, then what are we? I haven't figured that out yet.

8.  Practice moderation in all things.

Ya, right. I still watch too much TV, and surf the Internet too often. But I eat less and drink a lot less alcohol than I used to. Progress…

9.  When you are with the person you love just be there in total awareness. Be present in the moment without assuming or expecting anything.

This is the application of items 2, 3, and 4 to personal relationships.

10. You are not dependent on one another. You and the person you love are two self sufficient people who chose to travel through life together. One of you does not complete the other.

Ah, this is a loaded one. Modern romantic love concepts, which have not been around all that long in the grand scheme of human evolution, would have you believe that individuals are incomplete and lost until they find their soul-mate. Together, the two individuals merge into a single entity, and no longer exist independently.

At the risk of being labeled an unromantic person, and I have been more than once, I’m intrigued by the Zen approach to romance and love. “I am whole. You are whole. Let’s walk together, hand in hand.” Sharing your life’s journey with another, if it is the right person, can make life so much more enjoyable and meaningful. It has for me.

To be continued….

My MS/Disability Library

(Photo credit: Wikipedia)

I'm not a voracious reader, but I am a steady one. I always have a book going.

In the nine years since my diagnosis I've read a number of books about MS and other disability issues. Below is a list. I didn’t comment on each book in the list. Frankly, I can't remember the content of most of them. This bothers me. The section of my brain in charge of remembering the contents of books or movies doesn't work very well. Same deal with the section that is supposed to remember people's names, or a funny joke. I don't know if this is an MS (multiple sclerosis) or an M.S. (Mitchell Sturgeon) thing, but it's definitely a thing.

Please email me titles, along with your impressions, of other MS or disability related books. Click on my email icon on the top right-hand side of my blog. I'll summarize these in a future post.

Here’s my list:
 
Waist-High in the World, A Life Among the Nondisabled
Nancy Mairs 1996

Although this book was written well before I even knew what MS was, the story still rings true. It's a memoir, describing the author's journey from the time of diagnosis until the onset of significant disability. Although things were different in medical terms 10 or 15 years ago, the manner in which Ms. Mairs has dealt with the disease shows timeless strength and courage.

Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody
David L. Lander 2000

This is the first of several books on my list of the celebrity memoir type. Strangely, the writing quality of these non-writers is usually pretty good. I suspect heavy editing. Only Montel Williams admits to having a co-writer (see below). Their story isn't in-and-of-itself any more compelling than mine or yours. Yet, let's face it, it's more interesting to read about celebrity experiences than it is to read about Average Joe experiences, all else being equal. We are a society that loves our celebrities.

The only interesting point I remember about this book is how strongly David Lander felt that he needed to conceal his disease in order to survive in the acting profession. Unfortunately, he may have waited too long, as people started making assumptions to explain his poor walking (they thought he was a drunk).

Alternative Medicine and Multiple Sclerosis
Alan C Bowling 2001

This book was given to me by my neurologist, who has been consistent from the beginning in admitting that he has very few weapons with which to combat my primary progressive multiple sclerosis. I found this book to be well-written and well researched, but frankly I'm just not an alternative treatment kind of guy (says the guy who just had CCSVI treatment).

Meeting the Challenge of Progressive Multiple Sclerosis
Patricia K. Coyle, June Halper 2001

Multiple Sclerosis, Current Status And Strategies for the Future
Janet E. Joy, Richard B. Johnston, editors 2001

This virtual encyclopedia of all things MS came out of the Institute of Medicine, via the National Academies Press. Unfortunately, so many things have changed since 2001 that this book has become out of date. Hopefully an updated edition is in the works. Frankly though, things are changing so fast in the MS world these days, I don't know if a comprehensive book can ever be published without finding itself almost immediately obsolete. This is a good thing. The lack of change that we used to see in the MS world wasn't working for us.

When the Road Turns, Inspirational Stories by and About People with MS
Margot Russell 2001

The Art of Getting Well, A Five-Step Plan for Maximizing Health When You Have a Chronic Illness
David Spero 2002

Lucky Man: A Memoir
Michael J. Fox 2002

This is the first of Michael J. Fox's two memoirs. His life certainly makes a compelling story, Parkinson's disease and all. I've often said that the MS community needs a Michael J. Fox – a big-time celebrity activist for his or her disease. Maybe Julia Roberts or George Clooney. I would accept any member of the cast of Seinfeld, but they are getting a little old for an MS diagnosis. 

Multiple Sclerosis, A New Journey
Richard C. Senelick 2003

When Walking Fails, Mobility Problems Of Adults with Chronic Conditions
Lisa I. Iezzoni 2003

Climbing Higher
Montel Williams with Lawrence Grobel 2004















Blindsided, Lifting a Life Above Illness, A Reluctant Memoir
Richard M. Cohen 2004

Richard Cohen, a well known journalist in his own right, is the husband of TV personality Meredith Vieira. Not only has he fought multiple sclerosis, but also two bouts with cancer. This book is an excellent read.

Curing MS, How Science Is Solving the Mysteries of Multiple Sclerosis
Howard L. Weiner 2004

I hate the title of this book. Maybe from the perspective of a big-shot doctor who has dedicated his life to unraveling the mysteries of multiple sclerosis, it was time to write a book. However, from the perspective of a long-suffering multiple sclerosis patient who has received zero benefit to date from the medical community (unless my CCSVI treatment worked), I just don't see it. This is a good read for MS historians (if such a thing exists), or for fans of Dr. Weiner (if such a thing exists). Excuse me if I'm a little sour about Dr. Weiner, but he is publicly trashed my favorite MS theory, CCSVI, so I don't have much use for him right now.

Barrier Free Travel, A Nuts and Bolts Guide for Wheelers and Slow Walkers, Second Edition
Candy Harrington 2005

Candy is a wonderful disability travel writer. She also publishes a quarterly magazine called Emerging Horizons, and maintains a blog called Barrier Free Travels.

Yoga and Multiple Sclerosis, A Journey to Health and Healing
Loren M. Fishman, Eric L. Small 2007

This book does a decent job of presenting a variety of yoga poses that readers can choose from depending on their level of disability. After reading this book I practiced a few of the poses daily, for a number of weeks. I guess I'm just not a yoga guy, because it's been quite a while since I've practiced any of these poses.

Multiple Sclerosis, Your Legal Rights. Third edition
Lanny Perkins, Sara Perkins 2008

This is a must-read for all MS patients, addressing issues such as: insurance, debt, disability, taxes, family law, discrimination, etc. 

Living with Progressive Multiple Sclerosis, Overcoming the Challenges, Second Edition
Patricia Coyle 2008

This was given to me by one of my favorite physical therapists, Judy Sweeney. You can read about Judy here.

101 Accessible Vacations, Travel Ideas For Wheelers And Slow Walkers
Candy Harrington 2008

It was because of this book that my wife and I enjoyed an incredible Caribbean vacation in April of this year.

Always Looking Up, The Adventures of an Incurable Optimist
Michael J. Fox 2009

This is Fox's second memoir – probably not as compelling as the first, but I did manage to get through it and was happy that I did.

Primary Progressive Multiple Sclerosis, What You Need to Know
Nancy Holland, Jack Burks, Diana Schneider 2010

Multiple Sclerosis Manifesto, Action to Take, Principles to Live by
Julie Stachowiak, 2010

I am currently reading this book. My friend, the Wheelchair Kamikaze, recommends it. 

I’ve also borrowed a book or two from the local library. Here are a couple titles that I recall:

As for Tomorrow, I Cannot Say: 33 Years with Multiple Sclerosis
Diana Neutze, 2002

The style of writing and level of intellect of this author is very similar to Nancy Mairs, the first author in this list. If you like one, I think you'll like the other. I do. Ms. Neutze still maintains a blog called Living with multiple sclerosis.

Caddy for Life: The Bruce Edwards Story
John Feinstein, 2005

In the strictest sense this is not a disability story. It is certainly not an MS story. It's an accounting of the graceful passing of well-known golf caddy Bruce Edwards, from ALS. If you're a golf fan, this is a heart wrenching story and a must-read.

One Year Anniversary of “Enjoying the Ride”

I made my first blog post on July 22, 2009, called Let's Get This Party Started. I've been so busy these past few weeks that only today did I realize that I missed my one year anniversary. Good thing this blog is not a woman…

In my first year of blogging I posted 86 times. Here are some statistics:

Average days between posts:                        4.2
Average number of posts per week:                1.7
Number of visitors:                       approx. 18,500
Average visitors per day:                    approx. 50
Busiest day:                               March 28, 2010 (after posting CCSVI- Diagnosis and Treatment Log Entry #7)
Visitors on busiest day:                                656
Slowest day:                             October 9, 2009
Visitors on slowest day:                                  6
Number of visitors on Christmas Day, 2009:       16
Visitors who don't celebrate Christmas:            16 (estimate)

My busiest category was My Multiple Sclerosis Stories.  This is the memoir section of my blog that started with My MS Story Chapter 1 – My Left Foot Stages a Mutiny and ends with My MS Story Chapter 39 – Making a Smaller Me. Since it's a memoir, and I'm still alive, I guess the story hasn't exactly ended yet. My objective with this section of the blog was to relate to MS patients and civilians what it is like for a person to deal with multiple sclerosis, from diagnosis to disability. Of course my story is only one example. Multiple sclerosis is such a capricious disorder.  Each patient’s story is unique.

In the past few months I've posted often about CCSVI in general, and my CCSVI diagnosis and treatment experience specifically. That story is still unfolding, and CCSVI is a cause to which I am committed.

I've written about and created videos of my iBOT wheelchair. Right now the clock is ticking. In less than 3 1/2 years the iBOT will no longer be supported. Because it is such a complex device, it will essentially become useless after that time. I'm involved with a group of people who are trying to save the iBOT. Wish us luck.

This blog has been a blessing for me. I’ve thoroughly enjoyed writing it. I’ve reconnected with old friends and made new ones.  I’ve learned a lot about myself through the writing process (but I wonder if continuing to NOT think about my life would have been easier). Based on feedback I’ve received, Enjoying the Ride has been of some help to readers as well.  That puts a smile on my face.


Here are my ten favorite Enjoying the Ride posts, in the order they were posted:

How to Interact with a Disabled Person: 101

A few guidelines to help you understand the in’s and out’s, or do's and don'ts, of interacting with a disabled person.

My MS Story Chapter 6 – The Things I Learned One Night in Nashville

Because it brings back fond memories of one cold night in Nashville.

How to Select the Ideal Life Partner

A tribute to the most important woman (and person) in my life.

One September Day in 1969

A tribute to the original most important woman in my life.

My MS Top 10 Lists

A sometimes serious, sometimes lighthearted look at the ups and downs of living with MS.

My MS Story Chapter 20- Sometimes I am the predator. Sometimes I am the prey.

An accounting of my attempt to maintain an ancient family tradition. 

My MS Story Chapter 24- Life’s Little Indignities

Recounts my major "coming out" business trip, and some of the difficulties I encountered during it. 

Have I betrayed my childhood self?

My attempt at waxing philosophical.

CCSVI- Diagnosis and Treatment Log Entry #8- My Final Thoughts

A summary of my CCSVI treatment experience, immediately after my March procedure.

Have you ever seen a Black Swan?

Because I’ve always felt that we don’t give enough credence to the role that pure luck plays in our lives. “You make your own luck,” is only uttered by fortunate people.

CCSVI Diagnosis and Treatment Log Entry #10 – Results of My Ultrasound Examination

Image by meironke via Flickr

It is only possible to live happily ever after on a day-to-day basis.
  - Margaret Bonnano

Now that Kim and I have travelled to New York City three times in the past five months, for CCSVI related reasons, I find myself growing negligent in my sworn duty to hate the Big Apple. New York is beginning to grow on me.

I was raised to loathe New York City, primarily because our Boston sports teams competed with theirs. I not only hated the Yankees, Jets, and Knicks, but by extension the Empire State Building, Central Park, and musicals (both on-Broadway and off). Evolution has favored the human trait of “in-group loyalty.” Unfortunately, this trait naturally gives rise to “out-group hate.” Why? Maybe it’s because by denigrating outsiders, if we don’t entirely love the circumstances into which we are born at least our condition seems favorable by comparison.

Although New York City continues to grow on me, I won’t be moving there anytime soon. And don’t worry Red Sox Nation, there are some absolutes in this world after all. The sun will rise in the east tomorrow, a bear will shit in the woods tomorrow, and I will still hate the Yankees tomorrow (and musicals).

In March I was diagnosed with and treated for a condition called CCSVI, which is believed to be related to multiple sclerosis. This occurred at Brooklyn's Kings County Hospital Center, under the direction of Dr. Salvatore Sclafani. That was NYC trip #1.  To read about my CCSVI experiences, click here.

In late July of 2010, Kim, Zach, and I traveled to New York to attend Dr. Sclafani's CCSVI symposium. More precisely, I went for the symposium and Kim and Zach went for the sightseeing. They learned a lot about the New York City subway system that day - some good and some bad. This was NYC trip #2.

I thoroughly enjoyed the symposium. I was able to listen to and even rub elbows with some of the top CCSVI physicians and researchers in the world. I also met with several of my online MS/CCSVI buddies, and spent time with members of CCSVI Alliance, the non-profit organization that I volunteer for.  I had hoped to combine the symposium trip with an ultrasound examination at Kings County Hospital, but unfortunately the doctor who was trained in that procedure was unavailable on that day.

So, just two weeks later, Kim and I made NYC trip #3 for the aforementioned ultrasound test. Dr. Zamboni, the Italian physician who coined the term CCSVI, developed a specific doppler ultrasound protocol to determine if a patient does or does not have CCSVI. In order to meet the diagnostic criteria for CCSVI, a patient must demonstrate two or more of the following five criteria during the ultrasound:

1. Reflux (blood flowing in the wrong direction) in the internal jugular veins, in the vertebral veins, or both.
2. Reflux in the deep cerebral veins, and/or in other venous segments of the intracranial compartment.
3. Evidence of internal jugular vein narrowing (stenosis).
4. Blood flow not detected by doppler in one or both of the internal jugular veins or vertebral veins.
5. The cross sectional area of either internal jugular vein is wider in a sitting position than in the supine posture.

I met none of these criteria. Well, at least I don’t think I did. The examining physician, a colleague of Dr. Scalfani’s who was trained just a few weeks ago at Dr. Zamboni’s clinic in Italy, still considers the test somewhat subjective.  I am grateful that he was frank with me about that. He’s doing his best, but it’s not a straightforward task by any means.

How do I feel about the results of this latest visit to Brooklyn? Should I consider it good news that I don’t have CCSVI anymore, or should I consider it bad news that there is nothing more that can be done for me right now? Excellent question- I wish I had an answer. I wish I had a lot of answers.

What, then, is going on with my CCSVI and my MS? Here is where things stand:

• It’s still too early for me to say with certainty whether my disease progression is the same, slower, or non-existent. Stay tuned.
• It is not too early, however, for me to state that I’ve definitely not improved, as many others have (although not everyone).
• Based on what Dr. Sclafani saw in the March venogram, I almost certainly had CCSVI in my internal jugular veins and possibly in my azygos vein. He ballooned all three for good measure.
• Based on the ultrasound test this week, I likely no longer have CCSVI type problems in my internal jugular veins. We can’t know about the azygos, as this ultrasound test does not look at that vein.
• I may or may not have flow restrictions in various other central nervous system veins such as the lumbar and vertebral. Even if I knew that these veins had restrictions, we couldn’t know yet if this would affect my MS. Furthermore, even if we knew it could affect my MS we probably couldn’t treat those veins. Much more study is needed.
• There is nothing further that can be done for me right now relative to CCSVI, although as we learn more about CCSVI there may be procedures I can undergo later.

What, then, is going on with my general sanity?  Here is where things stand:

• Going forward, I need to keep my finger on the pulse of CCSVI research while not obsessing over it.
• I will try to heed the words of Margaret Bonnano (at the top of this post), and “live happily ever after on a day-to-day basis.” It will not be helpful for me to long for the healthy days of my past, or worry too much about my uncertain future.  I need to stay in the moment.
• I am alive; blood is coursing through most if not all of my veins; and despite everything I am still Enjoying the Ride.

Media Coverage

First, CCSVI Alliance, the 501(c)(3) non-profit organization that I volunteer for, had some good media coverage.  Check out this link.  Doesn’t their president, Sharon Richardson, look soooo presidential? 



Second, my friend Marc Stecker, aka Wheelchair Kamikaze, is featured on the cover story in the Fall 2010 edition of Momentum magazine, seen here. If you’re one of the few individuals in the MS world who has not yet visited his website, click here. 

Taking the iBOT to Bar Harbor

Check out my latest iBOT action video.  To see my other iBOT videos, look on the right-hand sidebar of my blog.  Enjoy!