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!

The Crap That Runs Through My Head

Such as...

“What if this weren't a hypothetical question?” 

And, stuff like the following little conundrum.  On Wednesday I took my handcycle for a ride. I felt strong. I covered 2.6 miles with only a couple of stops. This is a very modest distance for a healthy person, but trust me, for a person in my condition it was impressive. The ride invigorated me, and set the stage for a relatively energetic day.

Then I went out Saturday morning and only covered 2.1 miles, and had to stop about 10 times. The ride did not invigorate me.  In fact, I never completely recovered from it until the next day.  What changed?

As I was finishing up Saturday’s ride, I started to ponder that very question. What changed?  I approached the problem in a systematic fashion. The cause of my weak handcycling performance could have been due to differences outside my body or differences inside my body. Let’s consider the outside first.

Was the course different? No, I followed the exact same course (a little shorter on Saturday though).

Was the weather different? No, it was sunny and about 70 on both days, with light winds.

Was the bike different? I don’t think so, although I didn’t inspect it closely.

Time of day?  Nope.  9:00ish on both days. 

Overall, it doesn’t appear that any external factors were responsible for my disparate performances.

So what was different inside my body? Two possibilities come immediately to mind: what I ate and how I slept.

On Tuesday night, before my Wednesday morning ride, I slept about 7 hours, which is my average. On Friday night, before my Saturday morning ride, I slept 8.5 hours, which was very unusual.

On Tuesday, I consumed 1,722 calories. Remember, I’m counting calories these days to try to lose weight. On Friday, I consumed 1,976 calories, which included 2 lite beers in the early evening.

Was it my menstrual cycle?  Nope.  Last time I looked I have only male reproductive parts.   

I can’t think of anything else that I did differently on the days before my morning rides. Was the combination of more calories and more sleep on Friday the difference?  Did Friday's modest alcohol consumption have such a profound effect on Saturday's handcycling performance? 

Another possibility is that there were changes inside my body other than diet or rest. The obvious candidate is MS. Remember though, I have PPMS, which means that my health doesn't change much from day to day. I don't have those classic good days and bad days like people with RRMS do.  But maybe having a chronic, disabling disease causes me to constantly walk a fine line, where even the slightest changes in variables either external or internal to my body have a profound impact on my ability to function.

Or maybe I just need to stop thinking so much. A less analytical person might consider the same experience and say, "hmm, I wasn't nearly as strong today as I was on Wednesday. Oh well, it's probably nothing."

What do you say?

Have you ever seen a Black Swan?

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.

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.

(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.

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.

me 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.

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:

 

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

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:

“…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.”

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 17^th, 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.

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).