A Question of Control

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It's funny how sometimes snippets of conversation about a very specific topic can be insightful and enlightening on a much broader scale than originally intended.

It's currently major league baseball's playoff season, and the Texas Rangers are taking on the New York Yankees for the championship of the American League. Since I loathe the Yankees with every fiber of my being, and hold firmly to the belief that they are the physical manifestation of evil on Earth, I am fervently rooting for the Rangers to beat into bloody submission that fetid band of Satan's minions who sport pinstriped uniforms with a big NY stitched on them.

I make it a point to try not to hate, as hate is a poisonous emotion that does more damage to the person feeling it than to the person or thing at which it's directed. I make an exception for the Yankees. I hate them. I hate them. I hate them. May they all develop blistering pustules and suffer some hideously painful form of castration. Every Yankee win is a stab to my heart, and their every loss a fleeting confirmation that good can indeed conquer evil. This may sound crazy to some, but it's a feeling shared by most of the population of New England, and the minority of New Yorkers who call themselves Mets fans.

Ah, but I digress. What was I talking about? Oh, yeah, words uttered about one subject that can illuminate another. Anyway, the manager of the Texas Rangers is a man named Ron Washington, who before the season began was embroiled in a scandal about his use of cocaine, a substance to which he has an unnatural predilection. Apparently, he's been battling his substance abuse problem for years, and only managed to save his job by humbling himself, pleading his case before the team's owners, and agreeing to a strict program of oversight and counseling. So Ron Washington is a man who knows a little something about control, or, more precisely, the lack of it.

With his team leading Yankees three games to one in a best-of-seven series, Mr. Washington was asked at a press conference how he keeps his team calm and steady through the anxieties and emotions of such a highly charged series. Washington replied that his message to his players has remained the same throughout the season: that they must stay rooted in the moment, concentrate single-mindedly on controlling those elements of the game within their power, and accepting the circumstances over which they have very little influence. In baseball terms, this means catching the ball, throwing the ball, and running the bases to the best of your ability, each and every time. A player can't control what the other team does. If the opposing pitcher is especially effective on any given day, it may be extremely difficult to hit the ball with any authority. Still, by paying attention to the elements within their control, Washington's players have more often than not found themselves on the winning end even in difficult circumstances.

The basis of the wisdom that Mr. Washington imparted on his players applies not only to baseball, but to life itself, and is especially resonant to those of us suffering from chronic illness. The only person we have any real control over is ourselves; we have very little sway over the actions of others, or the circumstances that life doles out to us. Yet much time and suffering is spent trying to control elements that reside well outside our sphere of influence.

Despite what is often a lifetime of evidence proving the futility of such efforts, many folks make themselves miserable trying to control the actions of those around them. We chase unrequited love, attempting to will the person of our desires into having romantic feelings for us, an exercise that almost without fail ends in emotional disaster. We try to advance our careers or social standing by getting involved in petty games of politics, which can just as often lead to feelings of self degradation as it can to what usually amounts to some temporary form of satisfaction. We cajole, sweet talk, and bully, all in an effort to manipulate other sentient beings who have their own agendas and are likely trying just as hard to work us as we them. One thing I've learned through the years is that you never know what's going on in someone else's mind. Not that we shouldn't open our hearts and souls to others, as doing so is the only way to experience the majesty and grandeur of life, but we must be careful in choosing who we let in.

The only person we do have complete control over is ourselves. We can and should be the masters of our own thoughts, actions, and emotions. Unfortunately, for a variety of reasons, many people fastidiously avoid taking responsibility for their own happiness and success. Popular culture practically indoctrinates us into the belief that outside influences create inner satisfaction, and that our emotions have lives of their own. Quite frankly, this notion is nothing but a hurtful pile of horse crap. Emotions are complex things that arise from an intricate psychological web unique to each individual. Nevertheless, we create our emotions, we are not their creation.

Nothing irks me more than to hear people utter phrases like "I can't help the way I feel, I'm hardwired that way". Wrong. You can help the way you feel. It may take hard work, lots of practice, and extreme diligence, but if happiness and contentment are truly your goal, it's work that must be done. Letting others man the controls of your own happiness is akin to allowing yourself to be the passenger in a runaway car driven by somebody wearing an impenetrable suit of armor. The car will almost certainly crash, and the only one to suffer injury will be you.

When diagnosed with serious illness, we are confronted with an entirely different level of loss of control. Suddenly, we learn that our bodies have betrayed us, and that the enemy lies within. Despite whatever suspicions of illness we may have harbored, their confirmation is shocking. We are literally forced to separate mind and body, but this separation is often extremely difficult to achieve, especially as the body becomes less and less cooperative. As the meaning of the word "incurable" goes from abstract to concrete, we can arm ourselves for battle, and vow to fight her illness tooth and nail, but know in our hearts that the climb will be steep, and the conflict long.

We live in a body conscious, beauty obsessed culture. We look in the mirror and say,"that is me", not "that is my container". Yet, once serious and chronic illness strikes, we have no choice but to recognize that "me" is not the flesh and blood bag of bones staring back at us through the looking glass, but the spark contained within.

Ten years ago, I was happily swimming about a mile a day, an achievement that I took considerable satisfaction in, and one that was incorporated tightly with my sense of self. Now I can barely stumble 15 feet, and I'd probably need water wings to stay afloat in a pool. I took pride in my appearance, and derived considerable self-worth from my attractiveness to the opposite sex. Body and mind were tightly bound together, but my, how times have changed. Not that I am now some slovenly troglodyte, but if my self-worth were to be measured by physical prowess today, it could easily be paid for on a minimum wage salary.

Instead, the deterioration of my body has forced the evolution of my mind. When healthy, I paid lip service to the idea that happiness comes from within, and was indeed a choice, an aspect of life that in theory was under my control. Although cognizant of this notion, I was never able to live it. Too externally motivated, I all too often allowed myself to ride waves of emotion stirred up by the whims of others. I now understand the futility of such an approach, and as I've written before, can clearly see that happiness is not a single choice, but an infinite amount of choices made each and every day.

Illness has forced me to understand the concept of selective control, and to embody the reality that there is no way to direct the actions of others, the vicissitudes of life, or even the mechanisms of my own body. All that I can directly control is the essence of me; my thoughts, my emotions, and my reactions to the ever-changing world both outside and within. But that is enough. Releasing the external, embracing the internal, and taking it one moment at a time. Kindness to self leads to kindness to others, and then circles back again. Though being sick absolutely sucks, physical distress needn't consign you to a life of mental anguish. In the end, it's all up to you.

And also up to Ron Washington. At least for me. Because if the Texas Rangers don't knock off the New York Yankees, I will indeed know misery once again, and the forces of evil will run rampant through the land…

Another Interesting Hospital Roommate, and Too Much Time on My Hands

Image by Josh Liba via Flickr

Once again, I'd like to take the opportunity to thank everyone who has sent well wishes and messages of hope and healing. I am slowly "trending better" (in the words of my doctor) but still definitely feeling the effects of the truck that hit me. Hoping that the trend continues, and that someday very soon I'll be able to declare that I'm my good old bad old self.

In the meantime, I'm just going to try to gut my way through this, and resume as normal a schedule as my physical state will allow. I've got lots of catching up to do, both in terms of e-mails and private messages, and reading all of the MS and CCSVI related news that has accumulated over the past month. I'll pepper this blog with all items I find of interest, along with my usual commentary, for whatever that's worth. Seems that there's been a lot of CCSVI news both good and bad of late, and I'll try to make as quick a study of that as possible.

Anyway, I thought I'd share some of my experiences from the past four weeks. As during my hospital stay in July (click here for details), this last stint also included a rather colorful roommate. In July I was paired with an eccentric but very intelligent homeless person. This time around the man across the curtain was connected with a rather famous (at least here in New York) Irish mob called "The Westies" (click here for info).

The hospital I was in, Roosevelt Hospital, is on the fringes of the Manhattan neighborhood that has traditionally been called Hell's Kitchen. In these days of urban gentrification, there is an effort underway to re-label this neighborhood "Clinton", but the old name has stuck in everything but real estate brochures. As the moniker Hell's Kitchen implies, these were at one time pretty mean streets, controlled quite firmly by some lads of Irish descent not particularly averse to violence who came to be known as "The Westies". Though vestiges of the group still remain, by and large they've largely faded from view, and the neighborhood is now more the province of urban hipsters than old-school mobsters. When I first moved back to New York in 1999, I rented an apartment right in the heart of this neighborhood, on 49th St. between 9th and 10th Avenues.

My hospital roommate, Lenny, spoke in the kind of thick New York accent one rarely hears anymore, and sounded like one of the characters in the famous "Bowery Boys" movies of the 30s and 40s. He was probably in his late 50s, and had suffered a series of five strokes. The first night I was there, I overheard him telling an attending physician that he had survived quite a few traumas in his life, including a knifing to the chest and being thrown off the roof of a five-story building, and being no dummy, I put the accent and the stories together, and pretty much understood the kind of guy lying in the bed next to me. I figured I was in for an interesting few days.

Thing is, I tend to get along are quite well with guys like Lenny. I think it must be in my genes, as my great-grandfather and grandfather were both associated with the Jewish mob that thrived in the early decades of the 20th century, and came to be known as Murder, Inc. This was the group that spawned such characters as Meyer Lansky and Bugsy Siegel. Neither of my relatives were higher-ups in the organization, but suffice it to say that my grandfather didn't have a real job until he was 35 years old, when he married my grandmother, who was 17 years his junior. My grandmother pointedly assured me that my grandfather's associates were always perfect gentleman around her, and that she never saw my grandfather with a gun. She eventually forced him to quit the rackets, and he wound up working at a men's haberdashery, but family lore has it that he never quite went totally clean.

Whether for genetic reasons or not, I've generally gotten along very well with fellas who were "connected", and they've likewise usually taken a shine to me. Lenny was no exception. During the course of our conversations, which were not as lively as they might have been because of my raging fever and his sudden episodes of vomiting, I learned that almost all of Lenny's friends were either "dead, in jail, or in the witness protection program". I shared some stories about my ancestors, which he found highly entertaining, and he told me some details of his growing up in Hell's Kitchen, coincidentally on the same block that I moved to in 1999.

On my third night in the hospital, my fever was all the way up to 102°, the equivalent of nearly 104° for a person with a normal body temperature (my normal is about 97.2°). Lenny was suffering from a violent fit of vomiting, and though I continued pressing on the buzzer calling for a nurse, the medical staff was conspicuously absent. I took to shouting as loud as I could that somebody needed to get the fuck into my hospital room, because my roommate was in extreme distress. Finally, after about 10 min., some nurse’s aides came in to help Lenny out.

The next morning, Lenny thanked me for my actions the previous night, and told me that he would "never, never forget them". So, it seems that you all should probably try to remain on my good side, because I have a friend in Hell's Kitchen who could probably have someone bumped off for me for at a significantly discounted rate. I honestly wish Lenny the best, as he has several months of rehab from his strokes ahead of him, and the New York City that he represents is quickly disappearing, much to my overwhelming chagrin. I'd much rather share my city with folks like The Westies than with the criminals that populate Goldman Sachs and the rest of the Wall Street mobsters.

Since returning home, my convalescence has been nowhere near as exciting. I've been mostly confined to bed, and have spent my time watching innumerable documentaries on the chilling evil of the Nazis, searches for mythical beasts, and UFOs, three of my favorite subjects. Unfortunately, being stuck in bed leaves the mind much time to wander, and despite my usual efforts at mental discipline, my thoughts have often found themselves venturing into some very dark places. What would my life have been like without MS? Where would my career have led me? Although already moderately successful, my professional life was primed for launching to much greater heights had it not been cut short by this fracking disease. Who exactly was I now, this half paralyzed creature rendered dependent on others for basic daily needs? And what horrors does the future hold, should my disease remain on its current trajectory?

Frederick Nietzsche wrote, "Battle not with monsters, lest ye become a monster, and if you gaze into the abyss, the abyss gazes also into you." Indeed, at times during the past month, I've veered dangerously close to that abyss, and along with the physical tests of this latest illness, it's mental challenges have been almost equally profound. During the course of my MS, my mental state has often been in lockstep with my physical condition. At times when I'm feeling relatively well, Zen detachment becomes a goal much easier to achieve than when my body's progressive failings make themselves glaringly apparent. These past four weeks have found me at my physically weakest, battling an incredibly persistent fever, and without my usual activities and outlets for mental distraction, my thought processes have wandered into areas I rarely let them go.

I miss the old me. I miss being able to wake up, get showered, dressed, and out of the house in 45 minutes. These days it sometimes takes me 45 minutes to get out of bed. I miss regular social outings with friends, free from worries of wheelchair friendliness and urinary urgency. I want to be able to simply meet a few buddies in a divey bar and slowly, sloppily, and happily get totally bombed. My form of teetotaling MS has put an end to my drinking anything more than half a glass of wine, and that only on rare occasions. As much as I adore my wife, and as completely monogamous a man as I am, I miss the utterly harmless daily flirtations and sexual tensions of my old social interactions. MS and disability have made me into something of a neuter. Women don't flirt with guys in wheelchairs. I miss the furtive glances and hidden smiles, even though I would never act on them. Most of all, I guess, I miss the sense that the future was full of endless possibilities, and the magical thinking of the constant drive forward.

Make no mistake, I'm immensely proud and consistently astonished at the success that Wheelchair Kamikaze has found, and the fact that my silly little blog has enabled me to reach out through the ether and impact the lives of many, just as they have impacted my own. Perhaps there can be no greater success than helping others even as you help yourself, and I'm tremendously grateful to have been given this opportunity, but it's all been so unexpected. The impact that I always dreamed of making has come with a giant asterisk attached, and at an almost inconceivable cost. The emotional payoff of creating the blog has been beyond words, and I shudder to think what my life would be like without it. Hopefully, my rants and ruminations will continue to resonate with my fellow travelers down the road of MS, but, God, if only we could all just go back to being our healthy old selves, perhaps with a bit of the wisdom forced on us by MS thrown into the mix.

Okay, enough wallowing. No sense leaving an open invitation to the abyss, and really, there's so much left to live for. Like the "Ancient Aliens" documentary that I have recorded on our DVR, and the reams of CCSVI info I need to review.

Be careful about looking over the edge, though. I will, too.

I'm Back (though still a bit illin’)

Image by theG™ via Flickr

Hey folks, I'm finally feeling well enough to make a post, although I think it'll be a quick one, since my stamina still leaves much to be desired. Three weeks after being hit with this somewhat mysterious illness, I'm still running a low-grade fever, and my energy levels are quite low.

First and foremost, I'd like to deeply thank all of the wonderful people who have sent healing messages and well wishes via e-mail or comments on this blog. Although I'm not usually at a loss for words, I truly cannot express how deeply your expressions of concern are appreciated. When I started this blog a little over a year and a half ago, I never in my wildest dreams imagined it would attain the popularity that it has, and I'd like to thank each and every reader for your input and support through good times and bad. Although I have not been able to spend any time on the computer, I have been able to read e-mails on my phone, so your messages have gotten through, each one a drop of sunshine in an otherwise miserable experience. Unfortunately, I've not been able to respond to these e-mails because I rely on voice recognition software to "write" my responses, but as soon as I'm feeling up to it I plan on answering each e-mail individually. Please be patient, though, as my reduced energy levels and the sheer volume of e-mails that need responses will make this a slow process.

In a nutshell, three weeks ago today I was hit with a fever of unknown origin. Though both my blood and spinal fluid have been cultured for infections, none has shown up. Despite this, my illness has seemed to respond favorably to antibiotics, which further deepens the questions surrounding it.

I spent five days in the hospital, and yes, much like my last visit to the hospital in July, I did again have a very colorful roommate, who I'll write about in a future post. While in the hospital, my fever spiked to 102°, which is quite high given that my normal body temperature is about 97.2°. Needless to say this was scary, but large doses of ibuprofen managed to get the fever under control. As all of you with MS are aware, fever sends MS symptoms into overdrive, making such episodes all the more frightening. Worse yet, the nursing care at the hospital was in a word deplorable, as the ward I was in was understaffed, and the staff that was in place was simply overwhelmed by the volume of patients they needed to attend to. Still, the constant struggle trying to get nursing attention for both my roommate and I did nothing to alleviate my intense discomfort, and was frankly enraging.

All the more frustrating is the fact that the hospital I was in, Roosevelt Hospital in Manhattan, has a "VIP" floor (click here for details) on which patients have beautifully appointed rooms, individualized nursing care, gourmet meals, extra accommodations for family to stay with them, and even afternoon tea service. Naturally, all this comes at a steep price, starting at $400 per night for a "standard" room, above and beyond the regular exorbitant hospital fees. Of course, no insurance plan will cover such expenses, so these elite services are the province of the very rich, of whom there are plenty in NYC, who can afford to pay such prices out-of-pocket. Since my pain management doctor has his offices on the opposite end of that same floor, I've seen some of these facilities firsthand, including the beautiful dark hardwood floors (as opposed to the institutional tiles in the rest of the hospital) and the uniformed concierge ever vigilant at his desk. Yes, here in New York City, often called the capital of the world, the very rich get extraordinary care in the same hospital in which regular folks can't get a god-damned nurse or nurse's aide to give them their medication on time or to help out a roommate who is violently throwing up. So much for the myth of a just society…

Okay, that's it for now. Before I blow a gasket, it's back to bed for me. I promise to fill in the details in the coming days, not all of which are quite so dreary. Even in the most troublesome days there are reasons to laugh, and concentrating on just taking it one day at a time, along with the constant acknowledgment that we are all just bit players in a huge theater of the absurd, goes a long way in making things bearable. As Nietzsche said, that which does not kill us makes us stronger, but as a friend of mine responded, that which does not kill us can make us pretty damn sick.

My deep thanks again to all of you who have reached out in support, and a special shout out to my wife Karen, my mom, and the rest of my family, who have gone above and beyond the call of duty in caring for an ailing kamikaze…

Fever Fog

Unfortunately, this is still Karen reporting on behalf of Marc. Marc's fever is down after he started a course of Cipro (antibiotic). Since nothing is ever simple with Marc, the Cipro is giving him very uncomfortable side effects, mostly causing a racing heartbeat and making him feel very woozy. Overall, he's feeling better since the fever is down, and he's supposed to speak to his doctor tomorrow about switching antibiotics.

Testing has shown that it isn't the use of Methotrexate that made Marc sick. It could be a reaction to the spinal tap, but for now is being classified as a fever of unknown origin, just like in July. Although the doctors don't see a link, Marc and I think its very unusual to have two such episodes so close together. There was no Methotrexate in July and Marc has previously done at least 5 other treatments with the drug with no negative side effects.

Marc is worried that he has the disease that turns people into zombies and he has made me promise to shoot him in the head if he suddenly leaps out of bed intent on eating my brain. Since we don't have a gun, he is also instructing me to apply for the license NY requires to get one. He suggests contacting a relative outside NY to acquire one on the QT. One of us is related to a former mobster (fodder for a future blog post).

A Bump in the Road

I'm unhappy to report that I had to spend the last 5 days in the hospital. After undergoing a spinal injection of methotrexate as an experimental treatment to stop the progression of my disease, I developed aseptic meningitis. This is a non-infectious form of meningitis caused by my body's reaction to either the drug itself or one of the chemicals used to stabilize it. Basically my immune system went on the attack causing massive inflammation to the lining of my brain and spinal cord, resulting in high fever, headache and extreme weakness. Although I'm now home and feeling somewhat better, I'm still running a fever and I'm not sure how long this will continue. As soon as I'm up to it, I'll be back to my usual shenanigans. Until then I hope that all of the people who have commented on my previous post or have sent emails will understand the delayed response. Thanks to my dear wife Karen for her support throughout this mess, and who's fingers are typing this post. A full account of all of this (including incredibly inept nursing and an extremely colorful roommate) as soon as I'm up to it.

One Lifetime, Many Lives

"I've been a puppet, a pauper, a pirate, a poet, a pawn and a king…" "That's Life", made famous by Frank Sinatra

When telling stories about my past, I often find myself prefacing them with the phrase, "In another life…” Truly, some of the tales I tell from my personal history, given my current circumstances, do now seem to have been plucked from some other existence. My diagnosis of MS, and my subsequent taking leave of the working world due to disability, placed a full stop in the course of my life, creating a gaping chasm between my then and my now.

In retrospect I can see that even before my diagnosis, the whole of my existence could be divided into a series of chapters, defined by any number of parameters: age, location, relationship status, employment situation, emotional state. All of these chapters, though, shared a web of continuity, and although some changes were more dramatic than others, there was a narrative strand that bound them all together.

Not so with the chapter entitled "Multiple Sclerosis", which veered so sharply off plot that it not only transformed my physical reality, but in some very tangible ways forced changes to my very perception of self. The opportunities for introspection afforded by days upon days filled with no preordained activities have resulted in some unexpected realizations about myself, others, and the complexities of my previous, healthy, existence.

I grew up in New York City, and at age 18 left for college in Boston, where I wound up spending most of the 80s, first as a student, and then as a first generation slacker, living a very bohemian life as part of the city's musical underground.. After a brief return engagement in New York, the 90s found me almost accidentally residing in Fort Lauderdale, Florida, a place I'd never imagined I'd live, and where I never quite felt at home, but where my career took form, and the vagabond became, in fits and starts, a responsible citizen. The end of that decade found me gratefully heading back up North, home to New York City, whose rhythms I slipped back into with the ease and comfort of a favorite old sweatshirt, and which seemed as happy to see me as I it.

Of course, within each of those neatly divided geographic stanzas lie many different notes, some of them sweet songs of triumph and delight, others dark dirges of despair and disappointment. In between the highs and the lows were stretches of mere existence, the steady drone of days turning into weeks, and weeks into months. Along the way, as I navigated all of the peaks and valleys and long plateaus, I inevitably evolved and transformed. Looking back, there are some incarnations of myself whom I embrace fondly (I really like that guy in the 80s who dressed like a gypsy and thought he'd be the next Mick Jagger), and others at which I can simply do nothing but cringe and roll my eyes (not so fond of the fella who was such a fool for beauty that he allowed himself to be emotionally abused by a lovely sociopath). So many different me's, some who would barely recognize the others, but all of whom, for better or worse, equal the sum total of the person I am today.

Typically, for those enormously lucky enough to not step into one of the many calamitous pitfalls hidden within the landscape of life, there is little time for true reflection. Yes, when healthy I might occasionally give a peek over my shoulder at where I'd been, usually at times of joyful triumph or remorseful melancholy, but even at my most introspective I was far too immersed in the riptides of life to make sense of the complicated and often twisted and dented arc of my own existence. The emotions of the moment clouded such backwards glances, the past most often viewed as a kaleidoscopic jumble of my own history filtered through the realities of the present and my expectations of the future.

Those of us who the fates do lead to stumble onto the landmine called chronic illness are suddenly handed not yet another of life's many chapters, but a Part Two, a sequel of sorts, the lead actor plucked from familiar surroundings and dropped onto an alien stage. From this new vantage point, after the smoke clears, the rubble settles, and the ringing in your ears subsides, the life previously led can literally be examined as a finished product, complete in and of itself, disconnected in so many ways from this new and strange reality.

In some respects, the first few months of being on disability were almost akin to attending my own funeral. The life that I had known was over and drifting farther into history with each passing day. Now removed from it, I could view my past as a whole, a Rubik's cube that could be twisted and turned and almost made sense of. I could tease it apart and dissect it, isolate the many intricate and sometimes subtle connections between its many moving parts, and then carefully mull them over and gradually make an attempt at understanding. Eventually, I found that much wisdom could be extracted from the remains of the old me, or, more correctly, the remains of all the me’s I'd ever been.

One should be careful not dwell too long in the past, because it's very easy to get lost there and waste too many of the precious moments that make up the now. But the lessons learned from examining one's own history can be immensely valuable, and can serve as a textbook for making the most of the present.

In the Tarot, every deck contains the dreaded death card, a harbinger which is actually not so much a symbol of physical death but of the end of one phase of life and the beginning of another. Thus too the moment of diagnosis is an end but also a beginning. Despite the very real hardships and anxieties that come bundled with illness, this new beginning need not be one of unending misery, devoid of happiness and contentment.

Everybody's path to contentment is different, and after many years of seeking, I was surprised to find, from my new and uncomfortable perch, that one of the best ways to identify my own was to objectively examine my past, mindfully recognizing those elements that brought me joy and those that fueled disorder and discontent. By zeroing in on the diverse personas I had adopted at different junctures in life, with effort I found I could embrace and incorporate those I liked and respected, and discard the elements of those who I wished I'd never been. I finally understood that both joy and discontent are rooted deep within myself. Though external elements may trigger such feelings, the ability to feel them are entirely self-contained, and with effort can be controlled.

Within a single lifetime we all live many lives and play many parts. Suddenly facing chronic illness may force us to let go of one set of selves, but affords us a unique opportunity at redefinition, a chance to utilize the boundless wisdom we've gained by simply living but which we rarely stop to tap into, and to thus discover the true heart within. Every end is a beginning, and even if that new beginning has been forced upon us, and is filled with terrible unknowns, it is a chance at self-discovery. If you choose to take it, even tremendous misfortune can offer the occasion to be a better you than you have ever been before.

Kibbles and Bits

Okay, so this is just another in a series of "Bits and Pieces" posts, in which I provide a list of various shiny objects that have caught my attention at some point in the recent past. I just hate the conformity of having a long series of posts entitled "Bits and Pieces", so I hope you'll put up with my attempts to come up with variations on the theme. As a matter of fact, if any of you have any ideas for better titles for these kinds of posts, please feel free to leave them in the comments section.

I sure hope I don't get sued by the Kibbles ‘n Bits pet food company, as it is a copyrighted name. But just let the bastards try it, it will be a good chance to play the MS card ("Gee, I'm sorry Mr. Judge, but I have this brain disease, see, and…"). Incidentally, if you do have a dog, and you love the pooch, please don't feed it crap such as Kibbles ‘n Bits. Most commercial dog food is made of things you'd rather not know about and is largely responsible for the rise in cancer seen in household pets, which is epidemic these days. Instead, go with all-natural products, also sometimes called "human grade", such as those made by Wellness (click here) or Old Mother Hubbard (click here). When my dearly departed Stella (that’s her in the picture) was still with us (click here), we switched her from commercial dog food to the all-natural stuff on the advice of our veterinarian, and the difference in her overall health and demeanor was almost instantaneous, night and day. The food may cost a little bit more, but you'll save money on veterinarian bills in the long run…

Okay, now that I've veered completely off course, on with the show…

• A big thank you to everyone who listened to my interview with Karen Gordon this past Tuesday night. If you missed it, Karen has posted an excerpt on her blog (click here). The interview lasted about one hour and 45 min., well over the originally planned one hour (mostly because there were lots of good questions, and also because I'm a blowhard). I'm happy to report that the interview received lots of very positive feedback, but when I listened to the excerpt all I heard was some guy saying "um" and "you know" an awful lot. Because, um, I guess , you know, I'm unaccustomed to public speaking and stuff.

• "Musings of a Distractible Mind" is a fascinating blog written by a real-life doctor. His post "A Letter to Patients With Chronic Disease" (click here) is an incredibly honest piece of writing, and one that I think is a must read for all patients dealing with chronic illness. In the piece, Dr. Rob explains that many doctors are literally scared of the chronically ill, and goes on to tell us why. Overall, "Musings" is a captivating and valuable blog, giving patients a rare peek at what it's like to be on the other side of the stethoscope.

• Here's a small way all of my Canadian friends can do a little something to help further the CCSVI cause. This pro-CCSVI online petition (click here) is directed at Canadian Minister of Health Leona Aglukkaq, who recently announced the Canadian federal government's decision to not fund treatment studies of the liberation procedure. It should take about 10 seconds to fill out the petition, so if you are Canadian, please click the above link to let the powers that be know that you don't approve of their recent actions, or, more correctly, their inactions…

• One thing that is sure to make some of the staunchest CCSVI advocates' heads explode is the suggestion that some of the benefits described by patients after undergoing the Liberation Procedure may be due to the placebo effect. The truth is that the placebo effect is a very strong and poorly understood phenomenon, and one which can't be easily dismissed in any legitimate medical investigation. This article (click here) describes a trial involving Parkinson's patients, during which all of the patients involved in the trial received brain surgery. Some of the patients, though, received a sham procedure, in which they underwent the exact same extremely invasive surgery as the other test subjects, only the medication being tested was not injected into their brains. Incredibly, many of the patients who received the sham procedure experienced tremendous improvement in their symptoms, so much so that the medication being trialed was deemed ineffective, because those receiving it experienced just about the same level of benefit as those not receiving it.

  Researchers are now learning that the placebo effect is not simply the function of a patient's imagination. The effect is more pronounced in procedures in which the stakes are high, and actually appears to cause the brain to release chemicals directly involved in the disease process. In other words, the placebo effect may actually have some verifiable and beneficial medical significance. Truly fascinating stuff. The article also discusses the morality involved in the use of sham procedures, and also includes some patient perspective. In the recently announced Liberation Procedure treatment trials to be conducted in Albany, New York, (click here) sham procedures will be used to test the effectiveness of the treatment.

  Edited to add: based on some of the comments left by readers, it appears that some are taking this post to mean that I'm suggesting the placebo effect is responsible for all the benefits seen in patients who have undergone the Liberation Procedure. I am absolutely NOT saying this. I believe that many patients who undergo CCSVI treatment experience very real and very long lasting benefit. The placebo effect, though, must be factored in when trying to view the picture as a whole, as is evidenced by the above linked article.

• Many readers have e-mailed me asking for recommendations on good books about Multiple Sclerosis. In all honesty, I really haven't read many books on the subject, instead heavily depending on the Internet to do my MS research and learning. My friend Mitch, who writes the terrific blog "Enjoying the Ride", has read quite an assortment of MS and disability related books, which he reviews in this very valuable post (click here). While you're over at "Enjoying the Ride", be sure to poke around and check out some of his other posts, as Mitch's blog is chock full of extremely interesting and well-written material.

Well, that's it for now. Oh, one more thing. I took a tumble the other night (cane slipped, wobbly legs failed me, and I fell down and went boom), and thankfully Karen was home to help me struggle back into my wheelchair. If she wasn't home, I'd have been stuck on the floor ad infinitum. So, please, if you have trouble walking, be sure to always carry a cell phone with you, just in case you find yourself kissing the hardwood (or carpet, or tile, whatever the case may be). And don't worry, I'm no worse for the wear, just some bumps and bruises.

Have I ever mentioned that MS sucks?

Live Interview Time Changed to 9:30 PM This Tuesday Night

Image by Leo Reynolds via Flickr

The starting time for my interview in the "MS Voices" series, conducted by Karen Gordon, has been changed from 8 PM to 9:30 PM, New York time, this coming Tuesday, September 7. You can (click here) for a handy-dandy webpage that will convert the starting time to its equivalent in your own time zone. For those of you who have already registered, you should receive an e-mail confirming the new time. For those readers who haven't yet signed up, you can do so by (clicking here).

During the registration process, you can submit a question for me, and if you've been good this year, Karen will ask it. Please, nothing too hard, as I'm as sharp as an egg.

You'll have the option of listening to the interview via the Internet or on the phone, and if you choose to listen via telephone, you'll likely have the chance to join the show and ask me a question directly. I can only imagine the thrill.

Some Very Bad News for CCSVI Advocates… Followed by Some Very Good News…

Image via Wikipedia

But first, a little shameless self-promotion. Next Tuesday, September 7, at 8 PM EST, I will be interviewed live on the Internet as part of a nine week series entitled "MS Voices". I was very flattered to be asked to participate by the host of the series, Karen Gordon (The Self-Healing Coach), as some very impressive names are in the interview lineup, including Scott Johnson (founder of the Myelin Repair Foundation, one of my favorite MS nonprofits), Ashton Embry (founder of Direct-MS, a nonprofit MS advocacy organization), and Stuart Schlossman (founder of MS Views and News, an invaluable resource of MS info with worldwide reach), among a bevy of other very notable people in the MS universe. Truly, I'm delighted to have been included in this group, and I only hope I can hold my own amongst such an all-star lineup. Please register for the live netcast, and tune in next Tuesday night, if only to hear whether or not I make a complete ass of myself (click here to register).

Okay, on with the show…

On Thursday, August 26, the Canadian Institutes of Health Research (CIHR), in collaboration with the MS Society of Canada, convened a meeting of medical experts to determine whether or not the Canadian federal government should fund treatment trials of the CCSVI Liberation Procedure. Thus far, the MS societies of the US and Canada have divided $2.4 million worth of research funding up between seven CCSVI research projects, none of them directly testing the efficacy of The Liberation Procedure, the catheter venogram technique used to open up the blocked veins of patients found to have the venous abnormalities and resultant disruption in blood flow that have come to be called CCSVI.

Treatment trials of the procedure would clearly be the quickest and most effective way of determining the efficacy of the technique, and by doing so, the merits of the entire CCSVI hypothesis. To date, thousands of patients (estimates range from 1000 to 3000) have undergone the Liberation Procedure, many of them spending many thousands of dollars and traveling thousands of miles to foreign clinics for a chance at relieving their debilitating MS symptoms and the insidious progression of the disease, as very few doctors in the US (and none in Canada) are doing the procedure. Anecdotal evidence suggests that, for a sizable proportion of patients, the Liberation Procedure does seem to offer benefit, sometimes to a dramatic degree.

During the procedure, balloons or stents are used to open the blockages in patients' jugular and azygous veins, blood vessels that drain the central nervous system. While there is some acknowledged risk in the use of stents, and some complications have arisen due to their implementation, when balloon venoplasty is used alone it has proven to be a remarkably safe, minimally invasive procedure. Patients usually undergo the procedure with little or no sedation, and many leave the hospital only hours after the procedure is finished. Admittedly, the technique is not without its faults, as many patients see the blockages in their veins return some weeks or months after undergoing "liberation", a problem referred to as restenosis.

Earlier this week, the CIHR announced its verdict regarding treatment trials of the Liberation Procedure: "There was unanimous agreement from the scientific experts that it is premature to support pan-Canadian clinical trials on the proposed Liberation Procedure" (click here for announcement). The decision outraged many MS patients and CCSVI activists, this writer included. The CIHR released a 10 page document outlining the evidence presented and the reasoning behind its decision (click here for document).

I find it absoutely unconscionable that the simplest and most direct method of testing the CCSVI hypothesis has been continuously blocked, in large part by individuals and organizations entrenched in and enriched by the standard narrative that MS is an autoimmune disease that is strictly neurologic in nature. The autoimmune theory has held sway for over 20 years now, and has yielded, after countless research man-hours and billions upon billions of dollars spent, a handful of drugs that either modulate or suppress the human immune system. These drugs have been demonstrated to reduce MS relapses and the amount of lesions shown in MRI imaging in some, but by no means all, of the MS patients taking them. Ranging from obscenely to hideously expensive, the available MS drugs do absolutely nothing to address the underlying cause of the disease, and the continued emphasis on autoimmunity has effectively stopped most research seeking to find that cause.

One of the primary reasons cited for not approving immediate trials on the Liberation Procedure were alleged safety concerns for the patients involved. This reasoning is almost laughable. As I alluded to above, when confined to balloon venoplasty, we have thus far seen no major complications, and very few minor ones. These same experts so concerned with patient safety routinely prescribe drugs to those under their care that carry potential side effects the stuff of which nightmares are made.

The CCSVI hypothesis offers a radical departure from standard MS dogma. It is so "outside the box" that many neurologists seem to shun it reflexively, unable to even entertain the idea that MS might actually be of vascular origin, often treating proponents of the idea with derision and barely disguised mockery. A turf war has ensued, pitting neurologists against interventional radiologists (the specialists who perform the Liberation Procedure); tragically, it is the patients that are caught in no man's land, desperately seeking a cure, and finally finding a reasonable explanation of their disease that allows them, at long last, some hope.

On pages 9 and 10 of the document put out by the CIHR (click here) is a list of all of the experts who participated in making the decision to not fund treatment trials. A little googling should easily turn up e-mail addresses and phone numbers for most if not all of these experts. I'm not usually one to advocate open insurrection, but in this particular case I believe that these people should hear from the human beings their decision has impacted, which includes literally every single MS patient in the world, each of whom stand to benefit if CCSVI proves to play a part in the MS puzzle. I urge people to contact these luminaries, and in very polite, rational, but no uncertain terms let them know the misery that comes with waking up each day with MS, and the potentially calamitous effect their decision to delay CCSVI treatment trials has had on them and their loved ones.

Let me be absolutely clear, I am not promoting the harassment of these individuals. Contact with them should under no circumstances be in the form of epithet filled irrational harangues, but rather in personal stories of desperation, disability, and hopelessness. I am calling for advocacy, not agitation. I cannot stress this point enough. Expressing unfocused anger, resentment, and hostility will only make these folks dig their heels in harder, and will set back efforts to bring CCSVI into the mainstream. I am also very specifically pleading against the demonization of the staffers of the MS Societies, who work diligently to assist in the daily battles against the MS scourge that patients must endure. The staffers of these societies have nothing to do with the decisions made by the scientific panels and board members of these organizations. They are conscientious and well meaning, and it's not their fault that those above them seem to have their heads firmly implanted up their own backsides on the issue of CCSVI. So please, direct your frustrations at those responsible, a list of which is thoughtfully provided in the back of the CIHR document, not at those good souls who staff the MS societies.

Okay, enough with the bad news, here's some terrific news. A large-scale treatment trial of the Liberation Procedure has been approved here in the US. Dr. Manish Mehta, working out of Albany, New York, has been given approval to begin a 600 patient trial, scheduled to start in August 2010 and finish in September 2011 (click here for details). The trial will split patients into two groups, one which will get the liberation treatment, and the other a "sham" procedure. Comparing the progress of two groups will reveal whether or not the Liberation Procedure does in fact improve the condition of MS patients, and the degree to which the placebo effect is in play. Following just days on the heels of the discouraging news out of Canada, this approval seems almost heaven sent. The buzz in the CCSVI world is that a second approval is pending, with perhaps even more to come after that.

Of course, these trial approvals do not prove the CCSVI hypothesis, but at long last we will be on the road to discovering, sooner rather than later, using accepted, objective scientific standards, whether or not the Liberation Procedure actually provides relief from MS symptoms. These treatment studies will not answer the vast galaxy of issues swirling around CCSVI, but they will address the single most important question that patients suffering from the son of a bitch we call MS want answered: Does the opening of blockages in the veins that drain the central nervous system improve the physical well-being of Multiple Sclerosis patients?

We wait with bated breath for the answer…

Summary of Soon to Be Released CCSVI Study

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Dr. Marian Simka, who, working out of Poland, has perhaps performed more CCSVI liberation procedures than any other interventional radiologist in the world, has released the following summary of a soon-to-be released research paper. Its findings are dramatic, and have already provoked much discussion on CCSVI sites around the web and on Facebook.

Dr. Simka's summary:

"CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS" Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

ABSTRACT: Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.

Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.

Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis. Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

The above summary is short, but packed with tantalizing nuggets of information. Of course, the first item that leaps off the page is the finding that 97.1% of MS patients have venous blockages. Needless to say, this is a very compelling number, and begs for a comparison with the commonality of such blockages in healthy subjects. Unfortunately, to my knowledge no study using catheter venography on healthy patients has yet been done, so this data is simply not available. We can assume that the incidence of venous abnormalities in the general population would be much less than 97.1%, however, venous anatomy has been so little studied that I don't think such a statement can be made with complete confidence. Hopefully, the full paper will expound on this subject.

It's also interesting that Dr. Simka concludes that CCSVI venous abnormalities are probably congenital, but slowly progress. This conclusion would seem to be supported by his a summary of results, which found that younger patients presented with milder lesions, and older patients with more severe ones. I'm not sure of the biological mechanism that would lead to congenital deformations slowly getting worse with age. I had assumed that malformations present at birth would remain relatively stable throughout a subject's lifetime, or at least stabilize once the subject reached maturity. Again, we can only wait for the full paper to be released to get the good doctor’s thinking about these findings.

The correlation between severity and the location of lesions with disease presentation is also fascinating. It will be quite enlightening to find out just which locations correlate with higher degrees of disability.

Perhaps the most tantalizing piece of info in the research summary is the declaration that CCSVI venous abnormalities are "not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease". One can only wonder at the evidence found that prompts this statement, which would suggest that CCSVI treatment alone may not put the much hoped for kabosh on the MS disease process. Then again, perhaps taking venous abnormalities out of the picture will halt the disease despite whatever other factors may be present.

I guess we'll just have to stay tuned for the release of the full paper for all of these questions to be answered. In all likelihood, though, as with practically all research related to MS and to CCSVI, the full paper will raise at least as many questions as it answers. Grrrrr...

CCSVI: The Evolution of the Revolution

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It's now been about 16 months since the first Multiple Sclerosis patients outside of Italy underwent the venoplasty treatment known as The Liberation Procedure to address the then little heard of vascular condition termed "Chronic Cerebrospinal Venous Insufficiency", or CCSVI for short. Discovered earlier in the decade by the Italian vascular physician Dr. Paolo Zamboni, whose published papers reported success rates previously unheard of in the treatment of MS, knowledge of the condition and its potential relationship to MS was at that time scant, with few people in the MS community having ever heard of CCSVI. Those that were aware of the vascular hypothesis were confined, for the most part, to a small group of patients actively debating the relative merits and deficiencies of the hypothesis on one somewhat obscure MS Internet forum.

Well, what a difference 16 months make. The small trickle of patients undergoing treatment has now become, if not quite a flood, then at the very least an ever-increasing cascade, and word of CCSVI has spread like a kerosene fueled inferno throughout the MS population. Indeed, the very landscape of the Multiple Sclerosis world has shifted, as seismic waves of hope, promise, and controversy have swept over the horizon. In some cases, battle lines have been drawn, and in others, alliances formed. Fairly or not, in the eyes of many MS patients, mainstream neurology and the MS societies have become the enemy, mired in an outdated medical dogma and held in the sway of Big Pharma, and interventional radiologists following in Zamboni's footsteps have been hailed as conquering heroes.

Some of the first US doctors to start performing the Liberation Procedure were soon stopped by wary hospital administrators, but a handful of interventional radiologists in the United States are still openly doing the work, and a network of physicians operating "under the radar" has formed, their names being furtively passed from patient to patient via e-mail and social networking internet sites. Internationally, clinics offering the procedure are popping up from Costa Rica to Bulgaria, and the business of CCSVI medical tourism is booming. YouTube is bursting with videos of patients displaying their post-liberation gains, and web forums are abuzz with CCSVI chatter. Nonprofit CCSVI advocacy groups have formed, and patients, after years of being dictated to, are finally enjoying the self empowerment of having their say.

Put in its simplest terms, the CCSVI hypothesis states that blockages in the jugular and azygous veins, which drain the brain and spinal cord respectively, cause a long-term disruption in the flow of blood through the central nervous system, thus causing, over a period of many years, the damage to nervous system tissues that has come to be called Multiple Sclerosis. This relatively straightforward but radical notion flies in the face of accepted Multiple Sclerosis doctrine, which states that MS is an autoimmune disease caused by an immune system gone awry, and for reasons still unknown goes on a cannibalistic attack of a patient's own tissues. Though at first glance appearing to be at odds, in some ways the two theories actually complement each other, as CCSVI offers an explanation as to how and why immune system cells, which normally are stopped from infiltrating the central nervous system, can find their way through the blood brain barrier to wreak havoc on the nervous system beyond.

So, the CCSVI revolution rockets onward, an irreconcilable force destined to redefine, at a very basic level, medical science’s understanding of one of its greatest mysteries, the mechanism behind MS and maybe even some other autoimmune diseases, right?

Well, not so fast. Despite the boundless optimism expressed by many MS patients, there are still many very legitimate questions that need to be answered about the CCSVI hypothesis and the Liberation Procedure, questions impacting both near and long-term implications for the Multiple Sclerosis universe.

On a pathophysiological level, while CCSVI does seem to answer many of the perplexing questions surrounding MS, in some very important areas the hypothesis fails to reconcile with some firmly established facts about the disease. Among the most glaring examples of these are:

• The geographic distribution of the disease, which shows that the prevalence of MS increases indisputably the further away one gets from the equator. Additionally, migrant studies show that when people move from an area where MS is common to an area where it is rarer they show a decrease in the rate of the disease, whereas migrants moving in the opposite direction tend to retain their resistance to the disease. There is also evidence that susceptibility to the disease might also be linked to the age at which migration occurs. (Click here)
• The female to male ratios of people with MS, which appears to be growing farther apart. In 1940, the ratio of women to men with MS in the US was about 2 to 1. By 2000, that ratio had grown to nearly 4 to 1. (Click here)
• The genetic factors that have been identified as being related to susceptibility to MS, though few, are all associated with genes that play a role in regulating the immune system. (Click here)
• The association of MS with Epstein-Barr virus. Although over 90% of the population is infected with EBV, recent research has shown that people who don't have EBV do not get MS. (Click here)
• According to CCSVI theory, which states that blood refluxing back into the CNS causes the inflammation that is a hallmark of MS, it would seem that the amount of inflammation would continue to increase with the age of the patient. Instead, the inflammation seen in MS typically reaches its apex in the early relapsing remitting stage of the disease, but falls off dramatically when the disease enters the later, progressive stage. Patients who start out with progressive disease (PPMS), though generally older at the time of diagnosis, typically show very little evidence of CNS inflammation. (Click here)

Although it is difficult to understand the above factors in terms of CCSVI, they do not invalidate the theory. MS is an extremely heterogeneous disease, suggesting that multiple factors are likely at work, and that these factors very likely change from individual to individual. In fact, what we call MS may not be one disease, but rather a collection of diseases that share some common elements. A research effort called The Lesion Project (click here, page down to "Heterogeneity of the disease") has identified four distinct lesion types through the postmortem examination of MS nervous system tissues. The project has further found that each patient only exhibits one type of lesion, and that some of the lesion types surround blood vessels while others do not.. This evidence suggests that different disease processes may be at work, and it could very well be that CCSVI plays a major role in some forms of what we call MS, but a lesser role, or no role at all, in others.

This also helps explain the variance in the effectiveness of the liberation treatment from patient to patient. Some patients see dramatic improvements in their condition, sometimes almost immediately after having their veins unblocked. Other patients exhibit no benefit from the procedure, and some even get worse. Dr. Gary Siskin, an interventional radiologist doing the Liberation Procedure in Albany, New York, has publicly stated that one third of his patients see dramatic improvements, one third minor improvements, and a final third no improvements at all.

Dr. Siskin also stresses the importance of doctors managing patient expectations, as the vast majority of materials on the internet (YouTube videos, patient testimonials, etc.) paint an overly positive picture of the results of liberation. This isn't due to any kind of deception on the part of MS forum members or YouTube posters, but is simply a function of human nature. Patients who exhibit dramatic improvements are far more likely to publicize the outcome of their procedures than those who experience disappointing results. It's very important that patients go into venoplasty with reasonable expectations.

The tools and methodology for both the detection and treatment of CCSVI have so far demonstrated sometimes serious deficiencies. On the detection side of things, the most common noninvasive imaging techniques, MRV and Doppler sonogram, have both proven to be less than reliable in identifying the venous defects associated with CCSVI, returning both false-positives and false negatives. Doctors and patients alike have noted that their preprocedure imaging very often does not match up with what is actually found during the catheter venogram procedure, which is the gold standard for imaging venous abnormalities.

The handful of imaging studies done have produced widely varying results, some detecting nearly universal evidence of CCSVI in MS patients, and others finding scant evidence of CCSVI at all. While some of these discrepancies can be attributed to variances in methodology and operator competence, I believe the overall reason for these vastly different findings falls on the failings of technology. So far, the only reasonably reliable noninvasive imaging method appears to be Doppler sonography done according to very specific protocols designed by Dr. Zamboni, but even the results of testing done to these exacting standards at times proves to be unreliable, and, according to the doctor who performed my recent sonogram using the Zamboni protocols, are still somewhat subjective. The physical abnormalities being attributed to CCSVI are hardly subtle, and one would think, given the advanced state of medical technologies, that a variety of instruments and methodologies would be able to pick them up. Apparently, this is not the case, and it is imperative that better imaging techniques be developed, as it is simply not feasible to perform invasive catheter venograms on every patient suspected of having CCSVI.

At a recent CCSVI symposium attended by many of the interventional radiologists most experienced with the Liberation Procedure (click here for report), it was apparent that the Liberation Procedure itself is still in its early infancy and is a very much a work in progress. Many of the presenting radiologists commented on the steep learning curve involved with doing the procedure, and the opinions of these very accomplished physicians varied widely on subjects as fundamental as the proper size of balloons to be used during venoplasty, whether or not stents should be used to prop open blocked veins, and even what constitutes a treatable stenosis. Dr. Sclafani, who performed my attempted liberation (blockages were found but were unable to be addressed, click here for more info) has in no uncertain terms called this an age of discovery. If CCSVI is indeed shown to be a causative factor in Multiple Sclerosis, it's very likely that veins other than the jugular and azygos (such as the lumbar and vertebral veins) play a role in the disease, and presently there is no way to address blockages in these vessels. It's very important that patients be cognizant of these factors when making the decision whether or not to undergo liberation.

Many patients who opt for venoplasty alone (without the use of stents) experience restenosis of their treated veins, necessitating a repeat procedure. If the initial procedure was done locally, and was covered by insurance, this might not pose much of a problem. On the other hand, if the patient traveled thousands of miles, and spent the $10,000-$20,000 often required for travel and treatment, such a repeat performance may prove to be impossible, turning their initial procedure into a financial disaster.

Patients who have stents implanted in their blocked jugular or azygos veins are entering the realm of the unknown, as all of the stents currently in use were designed to be implanted in arteries, which anatomically are extremely different from veins. The only other patient population that regularly has stents implanted in their veins are end-stage hemodialysis patients, who suffer from extremely serious kidney disease. Studies done on the failure rates of these stents are not encouraging, often finding a 50% failure rate after one year (click here for an extensive study, or here for a chart summarizing its results ). I'm certain that the stresses placed on stents during the dialysis process are much different than those placed on stents implanted in CCSVI patients, so the validity of the comparison may questionable. Still, all of the currently available stents were designed primarily for use within the chest cavity, where they are not subject to the constant bending, twisting, and torque that they experience when implanted in the extremely flexible human neck. For patients determined to improve their hemodynamic blood flow and stand a better chance at avoiding restenosis, or whose veins simply don't respond to repeated attempts at ballooning, stents do offer a viable alternative to balloon venoplasty. Clearly, if CCSVI does prove to be an important piece of the MS puzzle (and I believe it will), stents specifically designed for use in the jugulars will be sorely needed.

In conclusion, it has certainly been an interesting 16 months. While much has been learned in regards to CCSVI, there is much more that has yet to be learned. Although some questions have been answered, many more have been raised. A robust treatment trial of the Liberation Procedure that includes sham procedures would be the quickest and most effective way to answer most of these questions. Researchers at the University at Buffalo are currently conducting such a trial, albeit a small one, limited to 30 subjects . Unfortunately, as of today, no other such trials have yet been funded.

CCSVI offers MS patients tangible hope, a commodity in perilously short supply before news of the hypothesis made its way through the Multiple Sclerosis community. Quite literally sick of, and from, taking the drugs that many MSers know are doing nothing to address the underlying cause of their disease, CCSVI has been embraced by patients with a fervor rarely seen in modern medicine. In some cases, I fear that the strength of these convictions has at times overwhelmed reason. I fully understand the desperation felt by those afflicted with this damned disease, as I am subject to it myself. Still, it should be at the forefront of every patient's mind that while the past year has been very encouraging, CCSVI and its role in MS has by no means been proven.

I personally made the choice to attempt liberation because of the severity and aggressiveness of my disease. Each patient must assess their own risk/reward ratio, keeping in mind that many of the questions surrounding CCSVI will likely be answered sooner rather than later, and the techniques used to address blocked veins will mature at a rapid pace, as physicians gain experience and work their way up the learning curve. Quite likely, Liberation Procedures done 12 months from now will be significantly different from those done today, and patients who can afford to wait before embarking on liberation will surely benefit from the accrual of knowledge and the perfection of technique that can only come with time.

Bits and Pieces: Little Bit of Everything Edition

Image by wallyg via Flickr

There's a Chinese restaurant around the corner from my apartment building that makes incredibly quick deliveries. Sometimes it seems like the delivery guy is knocking on the door of my apartment before I even put the phone down. I really don't know how they do it. Anyway, the menu features an item called "Little Bit of Everything Soup", and that's just what it is, a delicious medley of a little bit of everything. The soup is a meal in itself, sometimes even two meals, since the portions delivered can best be measured in gallons.

That's kind of what this post will be. I don't know that there's any real connection between any of the items here, other than they all piqued my interest in one way or another, and most at least have something peripherally to do with MS or mobility issues. So, submitted for your approval/attention/enjoyment, I present to you the following tidbits…

• Since CCSVI seems to be at the top of the list of everyone and everything involved with MS these days, I'll start off with a couple of "vascular theory" items.

  Demonizing socialized medicine is a favorite pastime of much of the US population, but as our Canadian friends are showing us, there's something to be said for a medical system that doesn't rely almost entirely on pharmaceutical companies to fund medical research. Although the Canadian national government hasn't yet acted in regards to CCSVI (although there has been plenty of debate about it in Parliament) the country's individual provinces are starting to step up to fill in the void. Saskatchewan started the ball rolling, with the province’s Premier, Brad Wall, announcing that Saskatchewan will start funding clinical trials of the Liberation Treatment regardless of the inaction of the national government (click here). Several other provinces, including Québec (click here) and Nova Scotia (click here), have joined Saskatchewan's call to action. Kudos to the Canucks, as treatment trials of the Liberation Procedure, which will be the quickest and most direct way to prove or disprove the CCSVI hypothesis, are desperately needed. Kudos also to my younger brother, who now lives in Montréal, is the Dad of an adorable French-speaking toddler, and recently became a Canadian citizen. The accomplishments of my little bro may have nothing at all to do with MS, but, hey, it's my blog and I'll kudo who I want to…

  One of the growing problems with the CCSVI wildfire that is raging through the MS Internet world is that folks new to the idea are getting an unrealistic picture of the success rate of the Liberation Procedure. If a patient were to get their knowledge strictly from YouTube videos and the various CCSVI related forums, they could easily get the impression that the procedure almost always results in dramatic improvements in those who undergo it. The reality is not quite as rosy, though, as some patients see little or no improvement after being treated by a Liberationista (I think I just invented that term, and I kind of like it). Dr. Siskin, the Liberationista working in Albany, recently stated publicly that one third of his patients experience only minor improvement, and another third no improvements at all.

  Having said that, I can't resist sharing the wonderful post-liberation experience of an MS patient name Nicole, who is a fellow member of the Patient Advisory Board of the CCSVI Alliance (click here). She first underwent venoplasty on her blocked veins at the beginning of March and saw some immediate improvements, but her veins then restenosed and her improvements receded. Nicole underwent a second procedure less than month ago, and has again experienced some very positive results, this time validated by her neurologist. She's written a great account of her triumphant neuro visit on her blog (click here). I'll have more to say regarding CCSVI in my next post, which will be entirely devoted to the subject.

• A fascinating article published in the New York Times this week (click here) details how a normally dormant gene in human DNA can somehow become "reanimated" and cause a form of Muscular Dystrophy. Scientists have learned that up to 95% of the genes that makes up the human genome are junk, remnants from the ancient past that have remained part of the structure of human DNA but serve absolutely no purpose in the development and functioning of modern human beings. Researchers were surprised to discover that some of this genetic junk can become reactivated, and in this case cause a rare variant of Muscular Dystrophy.

  What really grabbed my attention about this article is that several years ago researchers at Tufts University suggested that a similar mechanism may play some part in the MS disease process (click here). Many of the dormant genes in human DNA are left over bits of ancient retroviruses, which at one point were infectious, but over the course of hundreds of thousands of years of evolution have simply been harmlessly incorporated into the structure of the human genome. Scientists at Tufts suggested that the presence of long term "smoldering" infections, such as Epstein-Barr virus or HHV-6, might somehow activate these normally dormant viral remnants, thus leading the immune system to attack the body's own cells, and cause what has been come to be called the autoimmune reaction. The idea makes much sense, and at least offers some explanation of autoimmunity. I'm always incredibly frustrated when doctors simply label a disease like MS "autoimmune" and leave it at that, without attempting to explain why on earth the immune system would simply decide one day to become cannibalistic and start attacking the body's own cells. CCSVI offers one explanation of the apparently aberrant immune response seen in MS, and this reactivated gene theory offers another. They could very well both be right, as MS is so heterogeneous that a variety of different mechanisms may be at work in the different forms and presentations of the disease.

• The Beautiful Brain is one of the most interesting websites I've come across in quite some time (click here). Exploring the intersection of neuroscience and art, the site features essays, interviews, and galleries that delve into the how’s and why's of the biological impulses that lead to creative expression. It's filled with stimulating information about the essence of creativity, and the natural inclinations that lead human beings to feel the need to make music, paint, dance, and embark on all of the other artistic endeavors that so enrich our lives. It's also features lots of eye candy, amongst which is a gallery of intriguing artwork created by WK reader Elizabeth Jameson, who uses her own MRI images as the basis for creating striking visualizations (click here). Definitely worth checking out, but be forewarned, you may very well lose several hours getting sucked into the world of The Beautiful Brain.

• Moving from the sublime to the ridiculous, here's a page that highlights some of the most asinine wheelchair ramps ever constructed (click here). Whereas The Beautiful Brain leads one to marvel at the mystery and majesty of human intellect, this site reminds us that the stuff that resides between many people’s ears is no cause for celebration. Wheelchair ramps built at impossibly steep angles, that don't reach all the way to the top of the stairways they are meant to circumvent, that end in mid air? Yup, here they are, in all of their idiotic splendor. I have personally almost killed myself trying to navigate my chair up the nearly vertical incline that one New York City restaurant thoughtfully provides for its disabled customers, so the examples illustrated on this page should really come as no surprise. Still, though, I paused, stared, and wondered at the sheer stupidity behind the planning and execution of some of these comically absurd monstrosities. Attempting to actually use them would give new meaning to the words Wheelchair Kamikaze. Wow.

• Though you might not agree with everything he writes about or stands for, journalist Christopher Hitchens is inarguably an immensely talented scribe, and holds a high place among those storied and playfully wicked spirits known as gonzo journalists. Recently diagnosed with esophageal cancer, Mr. Hitchens wrote this exceptional piece for Vanity Fair (click here), in which he comments on his sudden abduction into the world of the ill, the very real likelihood of his own demise, and the seeming randomness of it all. A must read for everybody, whatever their state of health.

• I added a little doohickey to the left column of this page that allows readers to enter their e-mail addresses so that notifications of new posts will be sent directly to their inboxes. Wouldn't want anyone to miss a second of the exciting goings on here at Wheelchair Kamikaze. Yawn.

Well, that's all there is. And, as Peggy Lee sang so many years ago, in a sentiment that I think Christpher Hitchens would appreciate, if that's all there is, let's break out the booze and have a ball. If that's all there is…

Some Unsolicited Advice for the National Multiple Sclerosis Society

The fall issue of the National Multiple Sclerosis Society's magazine Momentum includes an article entitled "Safe Travels through the Internet", in which I'm quoted quite extensively (click here for article). I'm very thankful to be included in the article, along with fellow bloggers Lisa Emrich (click here) and Trevis Gleason (click here), and was quite surprised when I was approached and asked to be interviewed. I think the writer did a terrific job on the piece, which is extremely informative and should be very helpful, especially for those just getting introduced to the online MS universe. The entire magazine is a quite good, and is definitely recommended reading.

After Momentum came out last week, I received several e-mails expressing surprise that I would participate in a magazine put out by the NMSS, the inference being that since I'm a proponent of CCSVI, and have written extensively about my largely unenthusiastic views of Big Pharma and their MS products, that I should shun any association with a group that many perceive as the enemy, and one which numerous patients view as simply a shill for mainstream MS interests and the big pharmaceutical companies.

It struck me that this is a huge problem for the NMSS, and for the MS population. The fact that a significant percentage of MS patients view the largest and most visible nonprofit MS advocacy group as an adversary is a disconnect that both those struggling with the disease and the organization that is supposed to be dedicated to fighting the malady can ill afford.

The NMSS (and their sister Canadian organization) have long been targets for many in the MS online community. That enmity has reached new heights in the last six months, however, after the organizations' admittedly slow, clumsy, and misguided initial handling of the CCSVI issue. Even after the Canadian and US MS societies dedicated $2.4 million to CCSVI research, dissatisfaction with the organizations grew, largely because the research that was funded is more academic than practical, as no treatment studies received vital financial grants. This brought online gripes against the societies to new levels, with accusations flying that the studies funded were at best simply delaying tactics, and at worst intentionally designed to disprove the CCSVI hypothesis for the benefit of the MS societies’ Big Pharma masters.

Of course, the NMSS does much more than fund MS research. The society runs a host of valuable programs that benefit the MS community on both the local and national level, among them support groups for both patients and caregivers, government advocacy, MS education, financial assistance, scholarships for those living with MS or their children, employment resources, and help with procuring assistive devices. As for the research the society does support, a quick perusal of the NMSS website reveals that the society funds many innovative and cutting-edge projects (click here), most of which would otherwise get no funding at all.

Still, a large portion of the MS population regards the society as a monolithic entity, an instrument only interested in maintaining the MS status quo, enriching the society itself, and pushing the use of the hugely profitable immunosuppressive and immunomodulating drugs currently offered by the big pharmaceutical companies.

Since I started this blog 18 months ago, I've gotten to know several employees of the National Multiple Sclerosis Society. It may surprise some readers that these folks are not firebreathing ogres with glowing eyes, forked tongues, and pointy tails, but compassionate human beings who fervently care about ridding the world of Multiple Sclerosis and helping patients stricken with the disease.

With all of the above in mind, I thought I'd offer a few suggestions to the NMSS in an effort to help build a bridge between the organization and those who find it highly suspect.

My first suggestion is a radical one, but one that I think would almost instantly restore credibility to the NMSS as an organization wholly devoted to finding a cure for Multiple Sclerosis. The society should simply stop taking any funding from the pharmaceutical companies that market MS drugs. I've been told that donations from pharmaceutical companies represent less than 5% of the financial support received by the NMSS, and if this is true, rejecting this funding shouldn't be a crippling blow to the society's bottom line.

Additionally, I believe that if this audacious step was taken, much of the revenues lost would be made up by an increase in donations by patients and their loved ones who currently hold the society in complete disregard. Online, patients regularly talk about asking everyone they know not to make donations on their behalf to the National Multiple Sclerosis Society. By making the bold move of rejecting pharmaceutical money, the society would quickly win back many of the patients who are, under current circumstances, now lost to it forever.

Thumbing through the most recent edition of Momentum, the quarterly NMSS magazine, I counted 13 pages of advertisements paid for by the pharmaceutical companies, in a magazine comprised of a total of 70 pages. In fact, Pharma ads were practically the only advertisements in the magazine (there were also a few from medical device manufacturers). Given these numbers, and the fact that for many individuals Momentum is their major point of contact with the NMSS, it isn't difficult to see how the magazine's readers might get the impression that the NMSS takes its marching orders from Big Pharma.

I'm sure that the higher-ups at the NMSS can't be blind to the fact that taking money from companies that make billions annually marketing obscenely expensive drugs that ameliorate MS symptoms but do nothing to address the still unknown cause of the disease appears to be a conflict of interest for an organization whose stated vision is "A World Free of MS". Such a world would send many of the companies that market MS drugs quickly into bankruptcy court. Multiple Sclerosis has become the goose that laid the golden egg for these corporations, entities whose mandate it is to constantly drive profit, and that by law are beholden to their stockholders, not to the patients who consume their products.

My second suggestion would be to let us see some of the real-life human beings that staff the organization's national and local offices. Those that I've had contact with are empathetic, caring human beings, and many of them have had their lives impacted significantly by friends and family who suffer from MS. The society desperately needs to shed its monolithic image, to show the MS community in a very real way that it is not made up of faceless automatons, but by concerned people who, as one told me, would gladly give up their jobs if a cure for MS could be found.

The NMSS needs to humanize itself, and a strong dose of the personal touch is needed. A starting point might be to feature the profiles of select society employees on the NMSS website and in Momentum Magazine. Much more good would be served by devoting a few pages of the magazine to profiling real life, sympathetic NMSS employees than to advertisements for Avonex, Rebif, or Copaxone.

Lastly, I would ask the NMSS to play nicely with the other much smaller MS nonprofit organizations that dot the MS landscape. I understand that the competition for funding is fierce, especially given our current economic climate. But the NMSS has developed a somewhat cutthroat reputation among the nonprofits that compete with it, all of whom share the goal of ridding the world of MS. The NMSS is the de facto face of Multiple Sclerosis to the public at large; it's the only MS organization most of the population has ever heard of. Certainly there is room for smaller, more specialized organizations to have a place at the funding trough. This isn't a zero-sum game. As a matter of fact, it's not a game at all. People's lives are at stake, and by working with smaller organizations, rather than against them, a cure for this beast called MS will surely come about sooner. As was said during the civil rights movement, keep your eyes on the prize.

I hope these suggestions are taken in the spirit in which they are given. The lack of faith in the NMSS by the very population it advocates for is reaching the crisis stage in some corners. Direct action is needed, and despite the misgivings and suspicions held by some MSers about the National Multiple Sclerosis Society, the society can be at the forefront of affecting real change, by heartily rejecting the status qou and showing the community an energetic new face. The NMSS must redefine itself to the MS community, to the mutual benefit of both…