Our System for Treating the Sick Is Sick Itself; No Cure In Sight

Hippocrates: a conventionalized image in a Roman "portrait" bust (19th century engraving) (Photo credit: Wikipedia)

I’ve recently come across a spate of news pieces that illustrate just how far our health care system has gone astray. Most of the folks reading this blog are themselves chronically ill, or have a personal connection to the chronically ill. As such, Wheelchair Kamikaze readers are unfortunately more familiar than the average Jane or Joe with the inner workings of the world of modern medicine.

For the healthy, from the outside looking in, modern medicine can often appear to be a sleek and technically sophisticated miracle machine, using high-tech wizardry and groundbreaking research to treat and tame diseases that have been the scourge of mankind for millennia. This image is carefully cultivated, through public relations, advertising, and a news media that loves a good story about astonishing advances made in the battle against disease. Those of us who are forced to enter the belly of the beast, though, often find something quite different: a confusing, frustrating, and often dysfunctional world in which reliable answers are heartbreakingly few and where patients are too often seen as consumers rather than sick human beings. Though individual healthcare practitioners themselves are, for the most part, good men and women, the system within which they operate has evolved to put profit before patient, and the subtle and not-so-subtle pressures this framework exerts can warp even the best intentioned souls among them.

Here, then, is a smattering of examples that each serve as windows into the often enigmatic environment in which patients are forced to tread. Think of the following snippets as flashbulb lit snapshots taken in a pitch black room, briefly illuminating nooks and crannies that can only hint at the whole of a much larger setting. Each example is in itself maddening, but strung together they portray a system of treating the sick (and healthy) that has drastically gone off the rails.

♦ HCA, the largest for-profit hospital chain in the United States, is revealed in this article (click here) to have played host to a disturbingly high number of cardiac procedures (mostly angioplasties) that were found to be medically unnecessary, and apparently performed to drive profit and increase both the company’s and the treating physicians’ financial bottom lines. At Lawnwood Regional Medical Center, in Fort Pierce, Florida, a confidential review revealed that about half of the diagnostic cardiac catheterizations done at the facility were performed on patients without significant heart disease. A review of HCA internal documents indicated that “rather than asking whether patients had been harmed or whether regulators needed to be contacted, hospital officials asked for information on how the physicians’ activities affected the hospitals’ bottom line.”

Driven by the need to show steadily increasing profits in the face of the company’s impending Initial Public Offering, it seems that HCA turned to cardiac care to provide a reliable pipeline of revenue. A 2003 review of procedures done at Regional Medical Center Bayonet Point, in Hudson, Florida, revealed that a disturbing 43% of 355 angioplasty cases “were outside reasonable and expected medical practice”, and that treating physicians routinely overstated the degree of coronary blockage found in the treated patients. As a result of this internal review, Bayonet Point suspended the privileges of nine physicians. These cardiac procedures were a financial boon to the company, as Medicare reimburses hospitals about $10,000 for each stent used in angioplasties, and $3000 for diagnostic catheterizations.

One would hope that instances of such rampant malfeasance are extremely rare, but although this report concentrated on one large hospital chain, the unnecessary procedures were performed in a number of different facilities, and by a shockingly high number of physicians. As is evidenced by this account, the institutional and personal pursuit of profit within the healthcare system would appear to be a potent inducement for some of those who took the Hippocratic oath to turn their backs on that solemn text.

♦ The headline of this article shouts that “Diabetes May Be Reversed by Long Used Vaccine for TB” (click here). Great news, right? Well, not so fast. In a small study the 90-year-old vaccine, called BCG, was shown to induce the completely nonfunctioning pancreases of some type I diabetics to once again start producing insulin. “These patients have been told their pancreases were dead… We can take those people, give them a very low dose twice and see their pancreases kick in and start to make small amounts of insulin.”

So, what’s the problem? Sounds like widespread research should be undertaken posthaste. The vaccine already exists, and has been in use for almost a century to treat not only tuberculosis but also bladder cancer. But therein lays the problem. A 90-year-old vaccine cannot be patented, and is readily available as a cheap generic. Therefore, huge heaps of cash cannot be generated by finding new uses for it. Soon after the lead researchers made their initial discoveries using mice, “they tried to interest every major drugmaker in developing the vaccine as a possible cure for diabetes. All told her there wasn’t enough money to be made in a cure that used an inexpensive, generically available vaccine.” The researchers are currently undertaking fundraising from private donors, and thus far have $11 million of the $25 million needed to proceed to the next stage of research.

As disturbing as the story is, with its seemingly blatant disregard for the well-being of millions of people worldwide suffering from type I diabetes, the hard truth is that the major pharmaceutical companies were actually fulfilling their legal mandate in turning down research that had very little, if any, profit potential. All of the major pharmaceutical companies are public companies, their stock traded openly on world markets. Publicly traded companies are mandated by law to be beholden to their shareholders, not to the customers who eventually consume their products. The job of pharmaceutical company CEOs is not to produce the most beneficent concoctions their researchers can come up with, but rather the most profitable ones. In declining to fund further research into the BCG vaccine’s role in potentially eradicating type I diabetes, drug company executives were not only fulfilling the responsibilities of their office – doing their jobs, so to speak – but also following the letter of the law. Not to go all gutter on you, but how fucked up is that?

♦ As patients afflicted with a horrible disease that has no cure, we often vent our frustrations about those who are the face of this medical universe we have unwillingly been sucked into, the physicians who regularly treat us. A quick sampling of the online conversations being held on Internet MS forums soon reveals that many patients openly revile their neurologists, some of whom I’m sure deserve all the reviling they can get. I count myself as one of the extremely lucky ones, as I feel an actual affection for my neuro, despite his inability to stop the relentless progression of my disease. He’s simply an empathetic man, and his frustrations with trying to treat this repugnant illness are evidenced by his obsession with trying to unravel its mysteries. We don’t always agree on treatment options, but I know in my heart that my neurologist has my best interests in mind. I say this not only because of my own personal sense of the man, but also for some far more tangible reasons: he doesn’t accept insurance, and doesn’t allow pharma sales reps to enter his clinic.

This commentary (click here) provides some insight into the phenomenon of physician burnout, a condition brought on by the restrictions and edicts of a system that would seem to sometimes be as frustrating for the doctors trying to operate within it as it is for patients seeking reliable and compassionate treatment. A recent survey of 7000 doctors “found that almost half complained of being emotionally exhausted, feeling detached from their patients and work or suffering from a low sense of accomplishment.” Doctors suffering from such burnout are obviously more prone to make mistakes, have an inability to establish any kind of real relationship with their patients, and generally perform below the expectations of the sick people who are so reliant on them.

The cause of this physician malaise is often invisible to those of us under a doctor’s care, who may only see an insensitive and mechanical being who exhibits little or no empathy towards our plight. Indeed, that’s the way I viewed my first MS neuro, and why I sought out the services of the man who is now my doctor.

According to the commentary, “The study casts a grim light on what it is like to practice medicine in the current health care system. A significant proportion of doctors feel trapped, thwarted by the limited time they are allowed to spend with patients, stymied by the ever-changing rules set by insurers and other payers on what they can prescribe or offer as treatment and frustrated by the fact that any gains in efficiency offered by electronic medical records are so soon offset by numerous, newly devised administrative tasks that must also be completed on the computer.

In this setting, “doctors are losing their inspiration… and that is a very frightening thing.”

While this certainly does not excuse all of the bad behavior by physicians recounted by patients in conversation after conversation, it certainly makes some strides towards explaining it. Indeed, many doctors feel so frustrated by the factory like approach dictated by insurance companies, with daily quotas to see X number of patients and restrictions placed on the treatments they can offer, that they are leaving the practice of medicine entirely.

This of course does not excuse the behavior of physicians who blatantly order unneeded tests and perform unnecessary procedures simply to run up bloated billing, or who view their patients as vehicles for their own financial advancement. Such doctors do exist, and in unacceptable numbers, but can we expect more from a healthcare system that has evolved into a moneymaking Goliath, under the direction of huge corporations that routinely squeeze the humanity out of the medical equation? A system increasingly dominated by publicly traded companies whose calculations are based more on stock price than on patient care? From research labs to clinic examination rooms, the well-being of patients, and sometimes of the doctors who treat them, is being sacrificed at the altar of the Almighty dollar.

Is it any wonder that diseases seem never to be cured, but instead turned into lifelong “manageable” conditions, those suffering from them forced into a state of perpetual reliance on obscenely expensive pharmaceutical products to maintain some semblance of wellness, and sometimes even to just maintain life?

If only there was some evil cabal to blame, some sadistic brethren of money grabbers to be tarred and feathered and run out of town. But no, what we are faced with is a systemic dysfunction, a misguided medical colossus that requires only decent people doing their jobs to maintain it, even as its course runs further and further astray. It is an engine with a wicked momentum, dragging all of those in its tow to a place where everyone, eventually, will be unwitting passengers. Very few make it through this life without finally suffering serious illness, and this universal fate is what ultimately fuels the system, driving it ever forward.

Do no harm, indeed…

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A First-Hand Report – The Importance of Cerebrospinal Fluid (CSF) Flow in MS, and a Possible Chiropractic Approach to The Treatment of Neurodegenerative Disease

Recently, several studies have illuminated the important role that the proper flow of cerebrospinal fluid (CSF) through the brain and central nervous system plays in maintaining neurologic health, and also suggest that a disruption of CSF flow may play a part in a number of neurodegenerative diseases, MS included. Like CCSVI, which postulates that impeded bloodflow through the central nervous system plays a role in the development of Multiple Sclerosis, new research hints at a similar role for the flow of cerebrospinal fluid through the CNS.

Cerebrospinal fluid is a clear liquid that flows around the brain and spinal cord, and also fills natural voids in the anatomy of the brain, such as the ventricles and cisterns (the “empty” spaces in the brain as seen on MRI images). CSF serves several purposes. The brain and spinal cord are surrounded by CSF, the fluid in effect holding the brain in a state of suspension so that the weight of the organ is neutralized, keeping the lower part of the brain from suffering damage as a result of the total weight of the brain bearing down on it and pressing against the skull wall. In effect, the brain floats in a pool of CSF, which also acts as a cushion against sudden jolts or blows to the head. In instances where such trauma results in forces too great to be compensated for by the CSF, concussions can occur as a result of the brain crashing against the hard bone of the skull. Additionally, and no less importantly, CSF helps cleanse the brain of metabolic waste products, and also helps regulate the flow of blood through the central nervous system.

Most MS patients are familiar with CSF due to the ever popular and oh so pleasant procedure known as a lumbar puncture, or spinal tap. The stuff that the neuro draws out of your spine after sticking a spike into your back is CSF, which when analyzed can provide several indicators helpful in diagnosing the disease, such as oligoclonal bands, better known as O-bands. O-bands are an indicator of inflammation and immune activity going on within the central nervous system, an environment in which such activities are not welcomed. A vast majority of MS patients (upwards of 90%) have multiple O-bands, and the combination of CSF analysis and multiple lesions on MRI images are major components in completing a diagnosis of Multiple Sclerosis.

A number of recently published studies suggest that a breakdown in the natural flow of CSF can be quite detrimental to the central nervous system, and may be a driving force in the factors that culminate in neurodegenerative disease. One study (click here) discovered a previously unknown series of pathways that CSF follows throughout the central nervous system, providing new insights into the importance of CSF in the brain’s efforts to cleanse itself of potentially toxic metabolic waste products. Another study, done by Doctor Robert Zivadinov and the good people at BNAC, who are also doing extensive research into CCSVI, showed that CSF flow dynamics are altered in the brains of MS patients (click here).

Building upon the work of chiropractor Doctor Michael Flanagan, who has researched and written extensively on the role of CSF flow and neurodegenerative diseases (click here and here), another study, which used a specialized upright MRI device – known as a FONAR MRI – to scan MS patients, linked trauma to the upper neck and bottom of the skull to abnormal CSF flow and the eventual development of MS in study subjects (click here). This research, in turn, led to an ongoing investigation using FONAR MRI imaging in conjunction with a specialized chiropractic technique, known as Atlas Orthogonal, to demonstrate that not only is CSF flow abnormal in MS patients, but that this flow can be corrected by physically manipulating the Atlas bone, the uppermost cervical vertebra in the spinal cord. The bone gets its name because the weight of the entire head rests upon it, just as, in Greek mythology, the weight of the world rests on the shoulders of Atlas. This study is being headed up by chiropractor Doctor Scott Rosa and Doctor Raymond Damadian, the man who actually invented the MRI back in the 1970s.

The graphic below, which can be found at the information packed ATLANTOtec website (click here), nicely illustrates the detrimental impact a misaligned Atlas bone might have on blood vessels and nerves associated with the central nervous system:




In the above depiction, the yellow dot represents the vagus nerve, the blue dot the internal jugular vein, and the red dot the internal carotid artery. As the animation shows, a misaligned Atlas bone can put pressure on all three of these features, which, by appearances, one wouldn't imagine could do much good for the patient. Atlas Orthogonal chiropractors attempt to put the Atlas bone back into alignment using specialized techniques originated by Doctor Roy Sweat, which are taught at the Sweat Institute in Atlanta, Georgia (click here). The Atlas Orthogonal (AO) technique uses gentle pressure applied to the mastoid bone (behind the ear) to realign the Atlas bone, using a specialized table and an AO instrument carefully calibrated to each patient’s needs.

Since January, 2012, I’ve been taking part in the ongoing study being conducted by Doctor Rosa and Doctor Damadian, one of dozens of patients participating in the study. My involvement began with a trip up to Albany, New York, this past January, where I was scanned in an upright FONAR MRI that was outfitted with a prototype coil developed specifically to track CSF flow by Doctor Damadian, and which also utilized proprietary software to direct the scanning. After my initial scan, I was given an AO treatment, and then scanned again. Indeed, the differences between the two scans were rather dramatic. In my pretreatment scan, CSF flow was disrupted and seemed to double back and jet against my spinal cord directly at the spot where my one big lesion is  located. After the AO treatment, the scan showed a much more normal flow of CSF, resulting in a larger amount of fluid separating my brain from my skull base, and a more steady flow of CSF throughout my CNS.

It’s important to note that Doctor Rosa is using his own carefully developed derivation of the original Atlas Orthogonal therapy technique, using FONAR MRI imaging to calculate very specific parameters and angles for treatment (known as “vectors”). Therefore, his approach differs from that done by other AO practitioners, so much so that it is patent pending.

I’ve been receiving weekly follow-up treatment here in New York City by Doctor Scott Bender, who is working closely with Doctor Rosa on the study, and has been trained by Doctor Rosa on these specific techniques. This is not to say that the techniques practiced by other AO chiropractors are not potentially helpful, but the precise methodology Doctor Rosa uses is, at this time, unique. If study results warrant it, Doctor Rosa plans on training many additional practitioners in his approach, but until that time the exact techniques being used in this study are generally unavailable except from the few practitioners that have already been trained under Doctor Rosa’s guidance.

Although Doctor Rosa’s study is still underway, initial results appear to be promising. Some patients are reporting symptomatic improvements, but it is still too early to draw any conclusions. My own experience has thus far not been successful, as I have not (yet) derived any benefit from treatment. I’m a very poor example by which to judge, though, since my condition is extremely atypical, and, as I’ve previously written (click here), has defied all efforts at definitive diagnosis. Additionally, my body seems to have trouble holding the AO adjustment. Some patients report staying in alignment for many weeks after adjustment; I’m generally out of adjustment by the time I go back for my weekly visit to Doctor Bender.

Although provocative, the findings and hypotheses of Doctor Rosa and his associates are sure to be controversial, for many of the same reasons that CCSVI shook things up. Both theories fly in the face of traditional MS dogma, and offer explanations for neurodegenerative disease that differ greatly from those proffered by mainstream neurology. Multiple Sclerosis is nothing if not complicated, and its pathogenesis is almost certainly multifactorial. It’s doubtful that any one theory will prove to be THE key to solving the entire MS puzzle, but, given proper attention, some of these “radical” theories may have the potential to unlock the many mysteries held by MS, even if they do so tangentially. Investigations into the widely accepted autoimmune theory have yet to offer up anything approaching a cure, and the exploration of alternative theories, done responsibly, can only benefit patients as researchers broaden their horizons and begin understand MS as not strictly an immune modulated disease confined to the CNS, but a condition involving yet to be understood degenerative mechanisms with systemic implications as well.

As always, hope is on the horizon, and patience is the key. Unfortunately, for those of us suffering from a progressively crippling disease, patience comes at a very high price.

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Makes No Sense at All

My Uncle Paul was a good man. He was the kind of guy that New York City used to mint by the thousands, before the high finance types took over and used their wads of cash to smooth over the wonderfully hard edges that defined this once gritty city. Paul was a quickwitted, happily blue-collar, salt of the earth man’s man, who exuded a nonthreatening air of self-confident toughness that couldn’t hide his huge heart. He loved people, and was a virtual encyclopedia of jokes and one-liners, which he delighted in telling in staccato fashion, one right after another, until he had you laughing so hard that all the jokes blurred into one, making it impossible to remember any individual jest. He laughed just as heartily as his audience, with a big bright smile so infectious it could have been used to solve the energy crisis.

Paulie, as I called him, was a good husband and provider, and although never a rich man always kept my aunt and their three kids from wanting. An unabashed character, he rode motorcycles back in the 50s and 60s, when they were still emblems of danger and rebellion, and not the instant antidote to a midlife crisis or rideable bling that the wonders of modern marketing have turned them into today. A favorite family legend dates back 50 or 60 years, to a time when horse-drawn carts were still used to sell wares on the streets of the Bronx, where my mom’s side of the family grew up. As the story goes, a horse broke loose from its cart and started galloping down the crowded city streets. Paul, a kid brought up on and by those streets, instinctively jumped on the back of the horse as it ran by, and somehow managed to calm and then stop the beast. I’m sure as he dismounted he entertained the cheering crowd that surrounded him with a series of equine one-liners, a twinkle in his eye and a smile plastered to his face and the faces of all those within earshot.

In 1997, two of Paul’s now adult kids, a daughter and a son, died of AIDS within five months of each other, a tragedy so horrendous my mind still reels when I think about it. How brutally unfair, how sadistically abysmal was this twist of fate, a tragedy that makes a mockery of any naïve notions of a just universe. At the time I was living in Florida, and hadn’t seen Paul or my cousins in maybe a decade, and still the news hit me with a blow that bordered on the physical. The emotional storm Paul, my aunt, and their surviving daughter had to weather is, I think, impossible to comprehend, yet when I moved back to New York a few years later and became reacquainted with my Uncle, I was greeted with that familiar fusillade of jokes and that shining bright smile. Still, I could sense the gaping wounds deep inside my Uncle Paul’s soul, the presence of my prematurely deceased cousins always in the air, adding a bittersweet sense of melancholy to each encounter, my uncle’s laughing eyes unable to conceal the hurt beyond healing held within. Still, somehow, Paulie persevered, never publicly displaying any bitterness or despondency, my love and respect for him ever growing.

About six years after I returned to New York, Paul was diagnosed with cancer, and was dead within a year. I was three or four years into my MS diagnosis at the time, and already my mobility was severely hampered, but of course I attended the funeral of this man for whom I harbored such boundless fondness. While standing unsteadily at his gravesite, watching his casket as it was slowly lowered into the earth, I thought about the arc of his life, and couldn’t help but picture Paulie arriving at the pearly gates, breaking up the gatekeepers with some impeccably timed heavenly humor, and then purposefully asking them, “Now, please, please tell me – what the fuck was that all about?”

I often think of my Uncle Paul when contemplating the twists and turns of my own life. We humans (I’m assuming everybody reading this is human) have a tremendous need to try to make sense of things, to seek out order amidst the chaos of existence, from seeing giraffes in clouds or holy visages on pieces of toast, to trying to put the whole of our lives into some sort of logical context, mentally spinning and twisting the puzzle pieces of our pasts in an attempt to make them pave discernible paths to our present. This is especially true when we hit periods of misfortune, and now, despite my efforts to stay rooted in the present, I’m left with plenty of time on my hands courtesy of a crippling disease. Despite myself, I find it almost impossible to not look back and try to sort it all out, as if by identifying just where things went south I might somehow mystically resolve my present predicament, or if not fix it then at the very least explain it. Although I do recognize that there are no real answers to be found, at times I’m still compelled to stare deeply into my past, like a voodoo priestess gazing into a bowl of chicken entrails, and try to comprehend how the path of my life led me to this twilight zone existence, a man forced by disease to gradually watch himself disappear.

There are those who live very self-directed lives, who from a young age somehow knew what they wanted and how to make it happen. I was not one of them. Having now been chronically ill for over nine years, I’ve had a chance to observe some of these strange creatures firsthand. Many times, when in a medical setting, I’ve been shocked to discover the young person I’m talking to isn’t a volunteer or some kind of administrator, but an actual MD, doing their residency at an age at which I was still walking around with all the direction of a fart in a windstorm, counting on some tremendous stroke of luck to turn me into a rock star, actor, or writer. As a young man I suffered from an acute case of HUMA (Head Up My Ass) syndrome. Yes, I was the lead singer of punk rock band, and yes, I did do some writing, but I never did the heavy lifting necessary to turn dreams into reality, instead relying on serendipity to deliver me to what I was sure would be a star-studded destiny, one that would bring the recognition I craved along with the ability to live life on my own terms.

In the wee small hours I often can’t help but time trip back to periods of happiness and also to those of turmoil and discontent, wrestling with just how I journeyed from those places to my present reality. My life can quite tidily be divided into several distinct sections, a chronology of locations and circumstances that neatly cleaves along the lines of the decades of my existence. My childhood and adolescence, during the 60s and 70s, were spent in New York City, Boston played host to my college years and Bohemian post college days during the 1980s, the 1990s saw me become an accidental Floridian and then a reasonably responsible adult, and the dawn of the 21^st-century found my path taking me back in New York City, where at first things seemed to almost miraculously fall into place, my career blossoming and a wonderful woman agreeing to be my wife, only to hit an unexpected and treacherous detour in the form of a thus far incurable creeping paralysis.

Along the way I went through many changes, experienced triumphs and disasters, and committed deeds worthy of pride and others of regret. I met terrific people, made lifelong friends, and also encountered my share of liars, cheats, and flaming assholes. The precise path that winds through and connects all of the disparate elements of my history is paved with my own willful acts but also generous amounts of luck, both good and bad, a tidal wave of experience cresting to form the person who I am today. I suppose much the same can be said of almost all people’s lives; though the details and exact mix of ingredients may change, we all share the tragedies, victories, banalities, and scintillations of being human.

So, is there any sense to be made of this? Was there anything in Uncle Paul’s life, or my own, that offer any explanations at all? Did anything in my past presage the current troubles in which I find myself? For much of my life I was almost comically hypochondriacal. Was I perhaps not so much neurotic as prescient? Or is this just another example of the preponderance of chance in our lives; give me a room full of 100 hypochondriacs and I can guarantee that eventually almost all of them will find their worst fears realized.

As a young man, full of piss and vinegar, I loudly proclaimed that I would never succumb to the mainstream 9-to-5 workaday world, which I eventually and begrudgingly did, a fact that I never quite reconciled myself to despite my relative success. But MS put an end to my working life, and gave rise to this blog, which in turn has in bizarre fashion turned many of my youthful pretensions into reality. If, when I was 23 years old, a gypsy fortune teller had told me that in 2012 I’d be living in a high-rise apartment building next to Lincoln Center with my beautiful and loving wife, that my words and pictures would be seen and read by people near and far, that I’d sleep and wake to nobody’s schedule but my own, and that my thoughts might actually impact the lives of others, I’d have jumped for joy, believing that all my dreams would come true. Of course that fortune teller would have left out one tiny detail, an asterisk that would transform dreams fulfilled into, well, if not quite nightmares then something treacherously close.

One can drive themselves to madness constantly searching for answers to questions that might not even be questions but simply constructs of that strange human predilection for finding patterns in the sand. In the end, all we have is the present, and the best use to be made of the past is to learn from its hits and misses to how make the most of the moment now occupied. The future, for the sick and healthy alike, has yet to be written. We can exert our influence on it, but inevitably a large part of our fate is out of our hands, and just as it’s a fool’s errand trying to make sense of the present by ruminating over the past, it’s equally unwise to try to foretell the future based on current circumstances. The only sense to be made is that there is no sense; my uncle didn’t deserve his ill fate but neither does the son of a billionaire deserve the silver spoon they are born with. In the end, all of my pondering has led me to one conclusion, that we’re all just gamblers taking part in a giant crapshoot, and the best we can do is try to nudge the odds in our favor, blow on the dice, and let them roll…

POSTSCRIPT: As I was finishing this essay, the Olympic closing ceremonies were on TV in the background, and I suddenly heard this song filtering through. Perhaps there are more things in heaven and earth than are dreamt of in my philosophy…

Gimme Some Truth

Truth (Photo credit: Wikipedia)

A few minutes before midnight two Fridays ago, most people would've considered my situation (partially and increasingly paralyzed due to MS) much worse than those of a large group of people who were settling in for a midnight movie in a theater in Colorado. Just a few minutes later, though, my circumstances were suddenly preferable to that of many of those same moviegoers, victims of the latest tragic spasm of mass murder to tear through the increasingly stressed fabric of American society.

The unsettling facts of this abrupt turnaround in fortunes underscore much of what I've previously written about in this space, the fragility and capriciousness of life, the delicate nature of the foundations of day-to-day existence, and the importance of consciously appreciating our allotment of each bit of that most precious of all commodities, time. Despite the unquestionable struggle of daily life with a progressive debilitating illness, for all but the most afflicted things could get worse, much worse, and in less time than it took you to read these words.

Soon after the initial shock and anguish provoked by the tragedy in Aurora, the nation as a whole turned to a question so familiar to sufferers who have experienced the devastating diagnosis of a serious illness, why? Pundits and experts pontificated about all of the usual suspects; lax gun laws, the unstable mental state of the shooter, the widespread violence that has somehow become a hallmark of American culture. Of course, none of these answers satisfies, just as an MS patient's search for reasons can never truly be fulfilled, or sense be made of the fate that has befallen them. Are we victims of genetics, some insidious environmental infectious agent or toxin, retribution for some past so-called sin or indiscretion, or simply bad luck? And once the disease strikes or the bullets fly, does the "why" really even matter?

Of course it does. If MS is ever to be cured, the "why" of the disease must be positively identified and solved. If the United States of America is ever to get past these last several decades of spasmodic violence, during which it has experience a devastating relapsing remitting pattern of mass murder, the reasons behind these outbursts must be understood. The ever-growing list of horrifically violent incidents is instantly recognizable to most Americans, a gruesome litany that includes the Richard Speck murders, Oklahoma City, Columbine, Virginia Tech, Gabby Giffords, and now Aurora. Sadly, I've left out far too many other such episodes, sudden eruptions of slaughter that rivet the attention of the nation for a week or two, but once the dead are buried and the news cycle rolls on the questions stop being asked, and we retreat once again into a paper-thin shell of willful ignorance. Just as patients with relapsing remitting multiple sclerosis suffer temporarily crippling flare-ups of their disease and then revert to something approximating normal, constantly living in dread of the next attack, we as a nation suffer through these periodic attacks of butchery, captivated for a few moments but then returning to what qualifies for normal, albeit with a resigned certainty that in some 12 or 18 months another madman will open fire on another group of innocents.

The problem is that the answers to both MS and this new American tradition of random massacre (yes, these things do happen in other countries, but not nearly with the shocking regularity as here in The States) are tremendously complex, neither lending themselves to quick answers or easy solutions. The crucial first step in unraveling these complexities is understanding the truths behind both maladies, truths that require not only expertise in the medical and social sciences, but a lifting of the veil behind which the machinations of the medical and social establishments operate. In the case of MS, the quest for a cure is blunted by a system of medical research that has grown into a dysfunctional cash fueled behemoth, and the key to putting an end to the phenomenon of mass murder is not attempting to understand the motivations of each individual killer, but coming to an understanding of what it is about modern American popular culture that churns out these self-appointed executioners with such frightening consistency.

I don't pretend to have the answers to either the predicament, but I do have my opinions. The field of medical research has come to be dominated by the big pharmaceutical companies, who fund an ever-increasing amount – well over 70% – of the research done in this country. This was not always the case, as just a few decades ago most medical research was done in academic laboratories, relatively free from the influences of the marketplace. Now, research is funded by the very companies that stand to profit from that research, a situation that screams "conflict of interest". Studies of new drugs are funded by the makers of those drugs, and the results of those studies are published in journals that are often heavily influenced of these same companies, in ways obvious and not. Research on therapies or compounds that stand little chance of turning major profit is either never initiated or left to die on the vine. The doctors who dispense the medications produced by this system, while not blameless themselves, often must rely on this very same research when coming to treatment decisions.

Though it's easy to paint Big Pharma as a monolithic evil entity, the truth is that these corporations are only doing what public companies are mandated to do, constantly increase their bottom line. The job of pharmaceutical company CEOs is not to bring to market new drugs that would be of the most benefit to the patients taking them, but to constantly increase their company's profits to satisfy the perpetual drive for endlessly increasing stock prices. The problem lies not in the malevolent intent of those who are the gears and fuel of the modern medicine machine, but rather in the construct of the machine itself. Our system of medical research has evolved into a terrific engine for driving profit, but a terrible mechanism for actually encouraging the visionary, groundbreaking research required to find novel new treatments and even cures.

Likewise, popular American culture plays a role in influencing those whose sense of alienation, disenfranchisement, and frustration boils to the point of bursting, resulting in desperate acts of hateful self-expression that too often take the form of the massacres that now scar the American cultural landscape. Yes, the culprits are undoubtedly mentally ill, but their mental disturbances can be magnified to the breaking point by a pop culture that celebrates narcissism, bad behavior, and fame for fames sake, while fostering absurdly improbable fantasies of privileged lives and endless bounty.

We are constantly bombarded, in words and pictures, by messages whose intent is to make us feel discontented and somehow lacking. The ultimate goal of advertising, after all, is to create a sense of longing in those at whom the messages are targeted. Our lives could be as happy, exciting, and glamorous as the people on TV if only we buy the right beer or car or antiperspirant or clothing. But what happens to those loosely tethered souls on the fringes of society who follow these leads but find their lives as frustrating and meaningless as ever? Loneliness cannot be conquered by purchasing the latest and greatest chewing gum, and dysfunctional social skills cannot be fixed by driving the shiniest new Chevrolet. An urgently growing sense of estrangement and feelings of inadequacy cannot be eased by a constant celebration of the gilded few, with peaks inside "celebrity cribs" and lifestyles of the rich and famous, so out of the reach of the average American that those leading such rarified lifestyles may as well exist on another planet.

Popular culture has lately taken to bestowing fame on those who in the past would not only have been ignored, but quite likely denigrated for their poor behavior. Television has become dominated by reality shows depicting a warped, cartoonish world in which boorishness, selfishness, and outrageous self-aggrandizement is encouraged, bestowing celebrity on those that aren't merely completely devoid of talent, but quite often of any redeeming qualities whatsoever. Just as MS patients are cajoled into believing in drugs whose mechanism of action cannot even be explained by those who manufacture them, popular culture pours forth a noxious pablum of false promises that is the modern equivalent of bread and circuses.

Films have largely replaced character development and the art of acting with mono dimensional heroes and computer-generated stylized violence (the shooting in Aurora erupted as an on-screen shootout was being played out), and professional sports now put up with prima donnas whose only allegiance is not to their team or fans but to themselves and the almighty dollar. When I was growing up, if a football player did a dance after making a routine catch or tackle, his ass would have been relegated to the bench regardless of the magnitude of his athletic prowess, and a baseball slugger who flipped his bat and took the time to admire his own home run could be sure that his next at-bat would feature a fastball thrown directly at his ear hole. Today, such shenanigans are not only tolerated but celebrated, the perpetrators showered in adulation and fantastic riches. It's cool to be a jackass.

The emergence of the Internet and social networking, for all of their potential positives, including the ability of MS patients to network and gain power through knowledge, have also given rise to cyber bullying, and for those not part of the flash mob an increased sense of isolation and alienation. Facebook has given everyone the chance to trumpet their every thought and action, no matter how routine or uninspired, and to amass hundreds of "friends" with whom they've actually made little or no actual human contact, potentially diminishing the very meaning of true friendship. The Internet provides access not only to vast resources that had previously been the exclusive province of a chosen few experts, but also, for those so inclined, information and imagery that can make seem acceptable what most would consider depraved, and an avenue for securing the knowledge and materials to make real wicked or violent fantasies. Alone in front of their computer screens, troubled individuals can give full rein to the darkness within, nurturing it to the point where it can stay within no longer. Awash in seething anger and enraged by the frustration of not gaining the attention to which so many now seem to think they are entitled, the borderline personality can concoct and bring to fruition a chilling plan that will at once exorcise their anger and gain them the attention they feel has been unfairly denied them.

The politics and governance of our nation has likewise suffered a hard turn towards the ugly and dysfunctional, a creeping degradation akin to the civic equivalent of progressive MS, inexorably crippling the body politic even as we look on with increasing concern. Opposing viewpoints are vilified, and those espousing them seen as enemies, rather than fellow countrymen with a different opinion. Compromise is seen as weakness, even as the nation's problems fester and threaten the well-being of our great experiment in democracy. Ideologies have become chiseled in stone, leaving no room for negotiation and problem solving, so instead a citizenry hungry for answers gets posturing instead of solutions.

The truth is that the bumper sticker ideologies of the right or the left can no more easily solve our complex political problems than chanting "I Have MS but MS Doesn't Have Me" can cure the horrors of multiple sclerosis. Our political leaders are themselves bought and paid for by special interests that will countenance no deviation from the party line, prisoners to a political system held hostage by the need to constantly fund raise in a never-ending election cycle. None dare speak of the actions that are desperately needed, to tell the public that yes, taxes must be raised and entitlement programs must be cut, that we must tend to our own problems before attempting to solve the world's, and that the corrosive influence of big money politics must somehow be curbed, as the current state of affairs is untenable even in the short run. Doing this would take courage and true leadership, attributes that those in positions of power, and those who aspire to them, seem incapable of mustering. Left with little or no inspiration, the populace is left adrift, watching helplessly as a great nation is devoured from within, just as the MS patient watches their once strong body slowly failing. For those already feeling desperate, the constant political rancor and its attendant paralysis can only stir the fetid mental miasma that eventually leads to an unquenchable appetite for destruction.

This lack of courage and leadership coupled with a popular culture that puts little emphasis on integrity and elevates the crass is evidenced in both the deficiencies of modern medical research and the seemingly unresolvable problem of the periodic episodes of mass murder that are a malignancy blighting the entire nation. We need to hear the truth about a medical system gone off the rails as well as political and cultural realities that have warped well beyond what would have been recognizable only a few generations ago. As patients and as a nation our needs are many, but none is more important than a large dose of the truth.

Adventures Outside the Box: Attempting a Naturopathic Treatment

Dioscorides’ Materia Medica, c. 1334 copy in Arabic, describes medicinal features of cumin and dill. (Photo credit: Wikipedia)

Since my disease has proven to be extremely difficult to treat (I've always been something of a problem child), I'm quite open to new ideas about possible therapeutic options, as long as they make some scientific sense and don't present too much downside. I recently came across a research study (sent to me by a fellow MSer) that led me to investigate and then start a naturopathic program of medicinal herbal supplements, under the guidance of the terrific naturopathic doctor that is part of the team at my neurologist's clinic, the International Multiple Sclerosis Management Practice here in NYC (click here). Before I get into the details of this treatment regimen, please allow me to first provide a little background.

One of the most intriguing MS drugs now in the approval pipeline is BG-12, an oral drug that has been shown to be quite effective throughout a series of rigorous clinical trials (click here). Developed by biotech company Biogen, makers of Tysabri and Avonex, BG-12 differs from all other approved MS disease modifying drugs in that it does not directly suppress or modulate the immune system, mechanisms of action which are the reason why so many of the current drugs have daunting side effect profiles. Rather, BG-12 works by stimulating the body to produce enzymes that are strong anti-inflammatories and very effective antioxidants, thereby presumably protecting the body against the debilitating effects of oxidative stress, a biologic process that can lead to the damage and death of cells in the central nervous system (as well as other tissues throughout the human body).

BG-12 is a derivative of a natural product (it's an ester of fumeric acid, which is found in some mushrooms, lichen, and moss) that has been used generically in Germany for years to successfully treat psoriasis. I'm not sure how Biogen was able to patent this molecule and make it into what I presume will be a tremendously expensive drug, but we saw the same thing happen with 4-AP and Ampyra. All of this is fodder for a Big Pharma rant that I won't get into now.

Oxidative stress occurs as the result of the natural process of mixing oxygen and nutrients together to produce the energy needed to sustain animal life. One of the byproducts of this process are free radicals, unstable atoms or molecules that can damage or destroy healthy cells in the human body if left unchecked. Free radicals can be likened to the biologic equivalent of the exhaust fumes produced by automobile engines when they combine oxygen and gasoline to produce the energy necessary to propel a car. Just as you wouldn't want to breathe in too much of the exhaust coming out of your car's tailpipe, you don't want too many free radicals banging around inside your central nervous system doing irreparable damage.

Under normal circumstances, the human body has a variety of mechanisms in place to combat the effects of oxidative stress, by mopping up and containing free radicals before they can do much harm. In patients suffering from any one of a variety of neurologic diseases, though, it appears that the levels of oxidative stress become too great for the body's natural defenses to handle, which results, at least in part, to the damage in the brain and spinal cord seen in such diseases as Multiple Sclerosis, Parkinson's, and Alzheimer's. The reasons behind these high levels of oxidative stress remain unclear, but if they could be positively identified we'd likely only be a few clicks away from tremendous advances in effectively combating some horrendous illnesses.

Okay, enough with the scientific mumbo-jumbo, let's get to the good stuff. As I mentioned in the opening paragraph, about six weeks ago an MS friend sent me an e-mail containing a link to a study which showed that a dietary supplement called Protandim was more effective than BG-12 at stimulating the production of the same antioxidant enzymes as Biogen's soon to be approved MS drug, at least when tested in a petri dish (click here). Surprisingly, the study was sponsored by none other than Biogen! I'd never heard of Protandim, but a quick Internet search divulged the ingredients included in each Protandim capsule (click here).

Intrigued, I sent a note containing this info to Dr. Deneb Bates, the naturopathic doctor specializing in neurologic disorders who is part of the treatment team at the MS clinic where I'm a patient. Dr. Bates quickly got back to me, saying that she was a big fan of all of the stuff contained in Protandim, but that the dosages of the individual ingredients in each capsule of Protandim were too small to likely have a therapeutic effect on patients suffering from debilitating neurologic diseases. Dr. Bates suggested that I could try taking each of the ingredients individually, in dosages high enough to perhaps make a difference. First, though, she wanted to consult with my neuro, Dr. Saud Sadiq, to make sure he'd be on board with the plan. Dr. Sadiq checked my files to go over the results of some comprehensive analyses of my cerebrospinal fluid that his research lab had done a few years ago, and found that my markers for oxidative stress were tremendously high, therefore making me an especially good candidate on whom to try this experiment. So, with everyone in agreement, I started on the following program of supplements, beginning about a month ago.

Before I go ahead and detail the treatment regimen Dr. Bates came up with, I must advise anybody who would like to follow a similar treatment plan to first consult with their physician, because many of the following ingredients can interact with the wide variety of medicines MS patients typically take to control their symptoms. For this very reason, rather than start all the supplements at once, Dr. Bates wanted me to begin them a few at a time, so that we could judge which components were causing whatever negative side effects might crop up. With this in mind, on week one I started taking:

♦ Curcumin (500 mg, 3X/day)-Curcumin is a component of tumeric, a spice commonly used in curries and other Asian recipes. Curcumin has long been used for medicinal purposes in Ayurvedic medicine, the traditional medicine that has been practiced in India for about 2000 years. It has many purported beneficial qualities, and has been shown to be an effective anti-inflammatory as well as a strong antioxidant (click here).

♦ Milk Thistle (250 mg 2X/day)-Milk Thistle is a flowering plant in the daisy family that has been shown to have liver protective and antioxidant properties (click here). Before starting Milk Thistle, blood tests showed that my liver enzymes were somewhat elevated, likely because of the pharmaceutical cocktail I take to combat my neurologic symptoms and some other potentially serious health issues I'm dealing with. After only one month on Milk Thistle, my last blood test showed that my liver enzymes had fallen dramatically. Yay, Milk Thistle.

I didn't suffer any ill effects from the Curcumin or Milk Thistle whatsoever, so on week two I started:

♦ Green Tea Extract (250 mg 2X/day)-Green Tea Extract is purported to have antioxidant, anti-inflammatory, and anti-carcinogen properties (click here). Dr. Bates suggested that rather than take Green Tea Extract in capsule form, I could drink 8-10 cups of green tea a day, but I informed her that if I did that I would have to take up permanent residence in my bathroom, as I very likely would never stop urinating. Much better, for me at least, to take the stuff in capsule form.

♦ Bacopa (200 mg 2X/day)-Bacopa is a perennial flowering plant that has long been used in Ayurvedic medicine. Tests have shown it to impact the oxidative stress process, and Bacopa also exerts a positive influence on memory and mental acuity (click here). Tests also suggest that Bacopa may also be neuroprotective against Alzheimer's disease (click here).

I didn't suffer any negative side effects from the Green Tea Extract or Bacopa, so on week three I started the final ingredient, one which Dr. Bates was a little more wary of:

♦ Ashwagandha (500 mg 2X at bedtime, starting out taking only one capsule first to judge the effects)-Ashwagandha is sometimes called "Indian ginseng", because it is used in Ayurvedic medicine much the same way that ginseng is used in traditional Chinese medicine, to treat a wide variety of diseases. Ashwagandha is thought to be an adaptogen, a medication that normalizes physiological functions through the correction of imbalances in the neuroendocrine and immune systems (click here).

Unlike my experience with the previous four ingredients, I did have a hard time with Ashwagandha. Dr. Bates had me start out slowly, taking only one capsule a night, and by the second day I felt extremely sedated and very weak, with many of my neurologic symptoms noticeably ramped up. After consulting with Dr. Bates, we decided I should simply stop taking the Ashwagandha, since the goal of our experiment is to make me feel better, not worse. I was disappointed to have to stop taking the stuff, though, because of its many purported positive qualities. Dr. Bates did single Ashwagandha out to be the most potentially problematic ingredient of the bunch, and I'm glad we saved it for last and started slowly. The scientific name for Ashwagandha is Withania Somnifera, and somnifera means "sleep inducing" in Latin. Boy, in my case at least, they weren't kidding…

It's too soon to tell whether or not this adventure in naturopathic medicine is having any positive neurologic results, although my wife thinks I seem a little bit stronger. As I noted previously, my liver enzymes have come down significantly since I started taking Milk Thistle, so that's one benefit I'll definitely chalk up to the herbal medley. Dr. Bates told me she has several other neuroprotective and/or antioxidant supplements she wants to add to the mix, and I have an appointment with her in a couple of weeks to go over these. I will of course keep everyone updated if more mojo gets added to the brew.

I have to admit I was a little bit skeptical about all this going in, but the liver enzyme results can't be denied. The health of my kidneys has also been of major concern because of some of the pharmaceuticals I have to take, and recently my blood test markers for kidney function have been creeping near or above the normal threshold. Dr. Bates started me on a tincture called "Pellitory of the Wall" (eerily reminiscent of "Eye of Newt"), and after only three weeks my latest blood tests showed that these levels, too, have fallen back well into the normal range, a change so dramatic that my pain management doctor seemed stunned when the test results were faxed to him (I was there when he got them), and repeatedly insisted that he needed to call Dr. Bates to find out exactly what she had given me.

Although all of these herbs and other substances sound like something from a witches brew, I can assure you that to date I've found no evidence that Dr. Bates is a witch. I've had my eyes peeled for signs of black cats, broomsticks, and flying monkeys in her office, but so far my investigations have come up empty. She did once briefly turn me into a salamander, but I got better (apologies to Monty Python).

Again, I don't recommend anybody start this program without first consulting with their doctor, as some of the ingredients may be contraindicated by medications you're taking or some underlying condition you may suffer from. It's easy to think, "Oh, herbal supplements, what harm can they do?", but my experience with Ashwagandha definitely was a negative one, and the effects that herbal remedies have recently had on my kidney and liver enzymes were swift and dramatic. Remember, too, that marijuana and magic mushrooms are also "herbal remedies", and those certainly can pack a wallop. Not that I'd know anything about that…

Bits and Pieces-It's Not the Heat, It's the Stupidity Edition - CCSVI, MS Misdiagnosis, Medical Marijuana

heat miser! (Photo credit: picturemommy)

Summertime, and the living is easy. Except if you have MS, in which case the heat of summer brings with it the splendors of heat sensitivity. Many MS patients experience an amplification of their disease symptoms with even the slightest rise in body temperature, and as summer temperatures soar, so too does the intensity of the potpourri of debilitating symptoms those stricken with the disease have to deal with.

Back in the days before MRIs and spinal fluid analysis, a common method of diagnosing MS was the "hot bath test" (click here), which involved placing the patient in a tub of hot water to see if their symptoms worsened. Weakness, numbness, spasticity, cognitive dysfunction, and visual disturbances are just some of the symptoms that ramp up in seeming lockstep with rising temperatures, and as record highs have been registered in alarming numbers across the US these past few weeks (temperatures in large parts of the country exceeding 100°F for days on end), I can only imagine the MS patients in those locales sticking close to their air-conditioners, trying desperately to fend off the summertime blues.

For some reason, once the outside temperature exceeds 90°F, I find that my symptoms tick up even if I stay inside my air-conditioned apartment, which may seem strange, but facts are facts. I normally don't suffer from cognitive dysfunction (at least not any more than I did when I was healthy), but when the outside temperatures reach heat wave levels, I can literally feel my thought processes slowing down, and the rest of my symptoms likewise assert themselves with growing force. I become a lethargic, weak, numb skulled mess, much like some members of this year's edition of my beloved Boston Red Sox, who don't have MS as an excuse. As if the heat and my MS wasn't enough, having to suffer through a subpar Red Sox season is making me extremely grouchy, and we've only just begun July. To make matters worse, the living embodiment of evil on Earth, the New York Yankees, are once again winning game after game, like a demonic baseball steamroller. I loathe them. Really, my antipathy for the fucking New York Yankees knows no bounds, so much so that sometimes I scare myself. Hot fun in the summertime, indeed…

Okay, now that I've strayed way off topic, on with the monthly festival of MS related news items that I deem worthy of inclusion in these "Bits and Pieces" posts. Hey, it's my blog and I'll deem if I want to, even with a mind addled by a heat wave and the vagaries of America's pastime. And don't start with me about how baseball is no longer America's favorite pastime, or I'll futilely attempt to strike you about the head and neck with my neurologically challenged extremities…

Boy, I really am grouchy. Anyway, on with the show…

♦ I've previously written about the difficulties physicians have in diagnosing MS (click here), and several recent news items highlight this troublesome situation. A recent study by researchers in Oregon (click here) surveyed 122 MS specialists, and 95% said they had seen at least one patient in the last year that had been misdiagnosed with MS by another physician. Three quarters of the surveyed MS specialists said they'd seen three or more misdiagnosed patients within the last year. The researchers speculate that an overreliance on MRI imaging for diagnosis may lie at the heart of the problem. Surprisingly, as long as that patient wasn't on any MS therapy, one in seven of the doctors who had seen misdiagnosed patients did not always tell the patient, reasoning that changing the diagnosis might cause psychological harm. Maybe I'm just a cold hearted bastard, but if I found out my doctor suspected that I had been misdiagnosed and didn't tell me, he or she would soon be definitively diagnosed with power wheelchair induced broken shins.

An MS specialist from the Mayo Clinic recently delivered a lecture stating that the misdiagnosis of MS is "underrecognized, underappreciated, and understudied" (click here). Because of the push to get patients on disease modifying therapies sooner rather than later, it seems many doctors have liberalized their criteria for diagnosing MS, resulting in the misidentification of many diseases and conditions that can mimic MS. The lecturing physician further pointed out that by quickly labeling patients with MS, treating MDs miss out on the opportunity to identify new diseases, or separate out conditions that are rarer than MS but might respond to different treatment regimens.

I've talked about the controversial nature of my own diagnosis and my years long effort to get some kind of definitive answer. I'm continuing these efforts, because in my gut my tenuous diagnosis of MS or SS (Solitary Sclerosis-click here) just doesn't feel right. The specialists who examined me at the National Institutes of Health told me that they have seen misdiagnosis rates ranging from 5%-15% in many of the studies they'd conducted on MS patients, and the above news pieces bear out the difficulties involved with diagnosing MS. I don't mean to whip up doubt among the readers of this blog, but if your MS diagnosis is labeled "atypical", or doesn't fit with your understanding of the disease, I'd suggest that, at the very least, you get a second opinion. Despite what many doctors would lead you to believe, physicians are just as human as their patients, and as such are hardly infallible. There's an old joke: "What do you call someone who graduates from medical school with a C- average?" The answer is, of course, "a doctor". Hilarious, right?

♦ On the ever turbulent CCSVI front, an important piece of investigative reporting by journalist Anne Kingston was recently published in Canada's Maclean's magazine (click here). Through the use of government memos, the article details the convoluted and often disingenuous bureaucratic contortions conducted by the government officials charged with developing government policy regarding CCSVI. Since Canada has a system of nationalized universal healthcare, the government is intimately involved with the funding and implementation of medical research. The contents of the memos cited in the Maclean's article reveal that the appearance of objectivity was often given higher priority than objectivity itself, and that quite often efforts were directed more at quieting the uproar of patients demanding research into CCSVI then at designing and funding the much needed research.

What's truly disturbing about all this is how little regard patient well-being was apparently given throughout the documented process. Certainly, a quick and decisive decision by Canadian officials to fund and conduct robust CCSVI research could very well have led to reliable answers to the many questions that swirl around CCSVI to this day. Instead, Canadians flocked to treatment centers outside of their home country, where many thousands were treated but their outcomes insufficiently tracked, so we still can't judge with any real accuracy the efficacy of the treatment protocols they underwent or even the overall validity of the CCSVI hypothesis itself. The fact that over 25,000 MS patients have been treated for CCSVI worldwide and we've heard outcome reports from only a relative handful of them represents a colossal wasted opportunity for objective research.

The results of one small Canadian study that did get done were recently released (click here). The province of Newfoundland and Labrador spent $400,000 on the study, which compared 30 patients with MS who had travelled outside the province to have the therapy and 10 who did not. Participants were subjected to an array of tests before the treatment and then at intervals of one month, three months, six months and one year post-procedure. The patients were assessed using a combination of tests — questionnaires which the patients filled out, MRI scans of their brains, and a standardized test used to gauge function in MS patients. Those tests looked at manual dexterity, ability to walk and mental acuity. At the end of 12 months, no measurable benefit from CCSVI treatment could be detected, despite the fact that many of the treated patients reported feeling better on the questionnaires that they filled out. All patients were evaluated in a blinded manner – that is, the physicians assessing the patients and their test results did not know which of the patients had undergone treatment and which had not. An 18 minute video of the news conference announcing the study results can be downloaded at the end of the article linked to above.

Although the results of this study are disappointing to those of us that believe that CCSVI plays some role in the MS disease process, because of its size and limited scope this research can in no way be labeled definitive. While the study was blinded, there was no control group (patients who had undergone a "sham" procedure) involved in the research, leaving some room for doubt. Additionally, the patients who did undergo treatment were likely treated by a variety of doctors, all using different treatment techniques and practices, as no standard treatment protocol has yet been agreed upon. Still, the study does raise some legitimate questions regarding the efficacy of CCSVI venoplasty, and patients considering undergoing CCSVI treatment should be aware that the largely glowing patient reports found on CCSVI related Facebook sites and YouTube videos do not tell the whole story. Indeed, my own extremely anecdotal experiences with patients who have undergone treatment, both in my personal life and through e-mail sent to me via this blog, indicate that a significant number of those who have treatment experience little or no benefit, and some even report a worsening of symptoms. Of course, I've also heard from many patients who do report  substantial benefit, but at present the outcome results appear to be a very mixed bag. This could, of course, speak more to deficiencies in the CCSVI treatment protocol than to the overall CCSVI hypothesis itself.

The Newfoundland study does pick up on one potential extremely problematic aspect of the current state of CCSVI treatment, in that it found that one quarter of the treated study participants had blood clots or other blockages in their treated veins at the 12 month mark. If this finding is even close to accurate, the possibility exists that thousands of treated patients may be walking around with clots in their veins with no knowledge of it, as most have had little or no postprocedure follow-up. This is just one more area of the CCSVI treatment picture that begs for quick and serious study, and suggests that the many patients who have undergone treatment should seek follow-up examinations to make sure they have not developed clots or other occlusions.

One new and extremely controversial wrinkle in the CCSVI landscape is the emergence of jugular bypass surgery , which a few pioneering (and very brave) patients are turning to after experiencing continued problems with their veins despite undergoing multiple venoplasties. Unlike catheter venoplasty, which is minimally invasive, jugular bypass surgery is extremely invasive, involving the removal of a vein from the leg to be grafted onto a blocked jugular vein by means of open neck surgery. This procedure can only be considered extremely experimental. You can learn more about it through the video testimonial of a CCSVI Alliance activist who recently underwent the surgery, which she posted to YouTube (click here).

♦ Here are a couple of studies that just might qualify for one of my favorite topics, asinine research, but I'll try my best not to be snarky about them. Really I will. Both of them have to do with the propensity of MS patients to fall, given the fact that MS makes you all weak and wobbly and stuff. The first study, out of the Netherlands, found that MS patients are at an increased risk for fractures, particularly those caused by taking a tumble (click here). Shockingly, compared to the general population, PwMS have a four times greater risk of suffering broken hips, because, well, they kind of fall down a lot more than healthy people do, what with their wonky legs and all. Astoundingly, the researchers further found that MS patients who took drugs that can cause drowsiness and decreased motor coordination, such as some antidepressants and antianxiety medications, were at any even greater risk of doing a face plant than those patients whose brains were undefiled by pharmaceutical cocktails. Mind-bogglingly, the study, which looked at records from 2415 MS patients, actually found that patients suffering from a disease of the nervous system that causes weakness, paralysis, and balance issues who take pharmaceutical drugs that can make one feel totally blotto are at much greater risk of falling down and going boom than healthy people with perfectly functional arms and legs. Who would have guessed it? After conducting this exhaustive research, the analysis concluded that efforts designed to minimize the risk of falling by MS patients would be a very good idea. Now, why didn't I think of that the last time I found myself sprawled on my bedroom floor? Stupid me.

A second study found that vision loss may contribute to problems with walking in multiple sclerosis patients (click here). This study compared 22 MS patients with 22 age matched control subjects, and found that reduced visual acuity was associated with poorer gait performance under low light conditions. The study demonstrated that many of the MS patients experienced improvements in their lowlight vision when they wore glasses with contrast enhancing yellow lenses, which actually is a useful finding. Certainly, not being able to see in conjunction with the typical walking problems associated with MS is not a great combination, and many MS patients have poor low light vision. I know that I do, as I'm blind as a bat in dim light. This study was conducted by a medical student at Florida State University, and used no commercial funding, so although the findings may seem fairly self-evident, I applaud the student for identifying a problem and actually coming up with a workable solution to it. Wearing glasses with yellow lenses helps night vision, something I wasn't aware of, which is a bit of info that definitely might keep me from stumbling in a dark room were I to put it to use.

So, a piece of potentially valuable data from a study conducted by a medical student at very little cost. Terrific. There is, though, one line in the article describing the research that did make me want to slam my head into my desk. "On the gait tests, MS patients' functional ambulation performance scores were negatively associated with EDSS disability scores, indicating that increased disability was correlated with poorer walking performance." Really? And all this time I assumed that as disability increased walking became easier and easier. Now, finally, I understand why I have to use that freaking wheelchair. Mystery solved. This, people, is why medical research is so damned important.

♦ For quite some time there have been hints that cannabis (marijuana, pot, grass, tea, boo, weed, herb, ganja, vipe, Mary Jane, reefer, chiba, muggles, chronic, etc.) might have neuroprotective properties, and thus be useful in slowing the progression of MS disability, but sadly, a recent study refutes this claim (click here). Those who are devotees of medical marijuana need not flush their doobies down the drain, though, as there is still ample evidence that partaking of the demon weed does help reduce neuropathic pain and muscle spasticity, two major complaints of MS patients. The oral cannabis spray Sativex has been approved for use to combat MS pain and spasticity in England and Canada, but not here in the good old USA, because relieving the pain and spasticity of MS patients might lead them to try harder stuff.

Hey, this gives me a nice opportunity to post a song by one of my favorite all-time musicians, Fats Waller, singing about smoking the vipe way back in 1943 (actually, this recording is a cover of a song that was originally written in 1927). Enjoy!

Internet Down

Sorry for the lack of a recent post, but my Internet service is down. Posting this via iPhone.

I will have a new post up as soon as I'm back in the 21st-century. In the meantime, MS still sucks big fat hairy monkey balls. So does my Internet provider.

Hope to be back up and running in a day or two…

What Were the Odds?

Okay, I'll admit it. Despite my best attempts to stay in the moment, live my life mindfully, and not get overwhelmed with regrets about the past or worries about the future, every now and then the shock of my having a progressively disabling disease hits me square on the kisser. As I become more disabled and doing everyday things becomes increasingly difficult, those smacks to the kisser get harder to dodge . Sometimes, when looking at the multitudes walking effortlessly down the streets of the city, or watching a sporting event and seeing tens of thousands of people in the stands eating hot dogs and drinking beer, clapping and shouting and jumping up and down in excitement, I can't help but shake my head and wonder how in the hell I wound up being cursed with this freaking disease? I mean, what were the odds?

Well, during one such moment, I decided to do some quick calculations and figure out what the odds of my getting MS actually were. This is assuming, of course, that I do have MS, which isn't certain since my diagnosis is still a matter of some disagreement, but just for giggles and shits let's just say that my creeping paralysis is MS. That controversy settled, figuring the odds of my getting MS involved a relatively simple series of calculations. Since I'm an American, I based my calculations on the statistics relevant to the USA. The precise numbers vary from country to country, since Canadians and folks in Northern Europe have a higher risk of getting MS, and people living closer to the equator or in Asia have a lower chance of contracting the disease. In fact, people living in the northern United States have a higher chance of getting MS than those living down south (I think this might have something to do with grits), but math was never my favorite subject so I decided not to overstress my feeble noggin and just use the numbers for the USA as a whole.

So, given that the population of the United States is somewhere around 300 million, and there are an estimated 400,000 MS patients in the USA, the chance of any one American getting MS is 1 in 750. However, women get MS in greater numbers than men; the most commonly used figures indicating that the ratio of MS stricken women to men is 3 to 1, although in recent years this number has been widening, and women have been getting MS in even greater numbers than men (I'm pretty sure this has nothing to do with grits). For my purposes, though, given the feeble noggin thing, I went with 3 to 1. Therefore, using the aforementioned figures, the odds of any one female in the USA getting MS are 1000 to 1, and the odds of an American male getting the disease are 3000 to 1.


In other words, if, when healthy, I were sitting in an auditorium with 3000 other healthy men, chances are that one of us would get MS, meaning that any individual in that auditorium would have a 3/10 of 1% chance of getting the disease. And the winner is… me. And any other guy reading this who has MS. As the theme song for the old TV show Candid Camera used to say, "when it's least expected/you're elected/it's your lucky day/smile, you've got creeping paralysis". Okay, so that's not exactly how the song went, but I'm using some artistic license here, like I'm Picasso or Keats, and this is art. As if.

Going through all of the above calculations got me thinking about some of the other longshots that I've experienced in my life. In 1994, I hit Florida's "Fantasy Five" lottery, matching all five numbers on my ticket with the winning numbers, netting a nifty little prize of about $14,000. I did a little digging on the Internet, and found out that my odds of  holding that winning ticket 18 years ago was 1 in 65,780, so I was much more likely to get MS than win the lottery. Having done both, I can say one thing with absolute certainty. Winning the lottery is a lot more fun (and lucrative).

Way back in 1987, while playing golf for maybe the seventh or eighth time in my life, I hit a hole-in-one. Now, the course I was playing on wasn't a regulation size golf course, but what they call an "executive course", in which the holes are shorter than on the bigger links. Still, I had absolutely no idea what I was doing, and I hit a tiny little ball about 180 yards into a tiny little hole. According to the Internet, my odds of doing this were 5000 to 1, although I have to say that, given my inexperience and general ineptitude with a golf club, I'm pretty sure that there's no way in hell I could have duplicated that feat in 5000 tries. Or even 50,000 tries. Regardless, the chances of my getting MS turn out to be much higher than my hitting that hole-in-one. Again, having done both, getting the hole-in-one was a lot more fun. Seeing the looks on the faces of the people I was playing with was absolutely priceless.

All of the above numbers started my mind whirring, or at least wobbling, and doing a little more searching, I came across a whole bunch of other statistics with which to compare my chances of getting MS. The numbers regarding cancer were downright startling (click here). The risk of an American male developing cancer is 1 in 2, for an American female it's 1 in 3. Holy crap! So much for that vaunted War on Cancer we keep hearing so much about. If you’re a guy, the form of cancer most likely to send you off to meet your maker is lung cancer (1 in 15), followed closely by prostate cancer (1 in 36). For you gals, lung cancer will do away with 1 out of 20 of you, and breast cancer will claim 1 in 36 members of the fairer sex. Honestly, I had no idea the numbers for cancer were this high. Of some measure of solace is a new study that indicates that people with MS have an overall lower risk of cancer (click here), although it seems to be lower for some cancers and higher for others.

Here are some other grim statistics. Chances of dying from: heart disease-1 in 3, a car accident-1 in 18,585, any kind of injury-1 in 1,820, food poisoning-1 in 3,000,000, shark attack-1 in 300,000,000. Guess I don't have to worry too much about shark attacks, a fear which preoccupied me when I was a kid. Especially since I'm now partially paralyzed, and the odds of me actually going in the ocean are about 1 in 100 gazillion, give or take a few gazillion. Unless a Great White shows up in my apartment, I'm probably safe.

According to the Internet, my odds of winning an Olympic medal are 662,000 to 1, although much like the shark thing, in my current condition the odds of my winning Olympic pay dirt are about the same as those of monkeys flying out of my backside. Unless, of course, they add "hitting pedestrians with a power wheelchair" to the list of events, in which case I believe I'd be the favorite, especially given the increasing wonkiness in my "wheelchair joystick controlling" hand. The Internet also says my odds of getting canonized are 20,000,000 to 1, but I think that number may be a little off for me, what with my being Jewish and all. Not that I wouldn't like to be canonized, but rules are rules. Still, Saint Marc, patron saint of writing drivel on the Internet, it has a nice ring to it. On the other end of the spectrum, the odds of someone being considered possessed by Satan are 7000 to 1. Not sure of the accuracy of that number, though, as church documents confirm that at least 50% of my ex girlfriends were possessed by Satan. Luckily, I married an angel.

So, in the grand scheme of things, the odds of my getting MS (3000 to 1) were shorter than my getting a hole-in-one (5000 to 1) or winning the lottery (65,750 to 1), all of which I accomplished, but longer than the chances of my getting away with murder (2 to 1), developing hemorrhoids (25 to 1), or being on a plane with a drunken pilot (117 to 1), none of which I've yet to experience. I'm not quite sure exactly what wisdom there is to be gleaned from this jumble of numbers, but I do know this: the odds that MS sucks great big fat hairy monkey balls are a dead solid 100%.

Taking the Good with the Bad (Some New Photos for the Gallery)…

(Just a quick note: due to the high volume of e-mail generated by this blog, and the increasing challenges posed by my illness, I will regretfully no longer be able to answer every e-mail sent to me via the "e-mail me" button on the left-hand column of this page. I deeply appreciate e-mail contact from the readers of Wheelchair Kamikaze, and will continue to read everything sent my way, but the realities of my situation (being sick takes up way too much time) have made directly answering each e-mail extremely difficult. I'll still try to answer as many as I can, though. I hope y'all understand…)

In my last post (click here) I recounted the details of my most recent wheelchair trip to the Conservatory Gardens in Central Park, when the progression of my disease crept up and bit me on the ass, making my "new normal" abundantly clear. I had gone to The Gardens to do some photography, and despite the day not going quite as I had planned, I did manage to take some photos of the springtime glory that was my reason for setting out for that spot in the first place. About half of the below photos were taken on that day. I think some of them turned out pretty well, so I'm happy to share them with you here, and also have them represent a big "fuck you" to Multiple Sclerosis (or Solitary Sclerosis (click here) or whatever it is the hell I have). All of the photos of flowers and cherry blossoms were taken at The Gardens, but so too was the image of the chained iron fence, so I guess a bit of symbolism could be extracted from this collection, for those inclined to look for such things. Beauty and the beast, so to speak…

The remainder of the photos were all taken with my handy dandy iPhone camera on the streets of NYC and along the Hudson River. I purchased a neato clip on lens thingy for the iPhone, called an Olloclip (click here). The Olloclip slides right onto the iPhone, and includes three lenses in one gadget: a wide-angle lens, a macro lens (for taking close-ups), and a fisheye lens. The fisheye lens takes extreme wide-angle shots, covering an almost 180° field of view, making for some very interesting visuals. Fisheye lenses generally cost many hundreds of dollars, and the Olloclip was well under 100 bucks, so the quality of the lens has some "personality" that is lacking (hopefully) in its much more expensive cousins. Still, it's a hell of a lot of fun to play with, and the images it produces are, I think, quite passable. You'll be able to identify the fisheye shots immediately, as they're the ones featuring circular frames and wildly distorted objects. If you have an iPhone 4 or 4S, and want to have some fun with the surprisingly high-quality camera included in the gizmo (which is why I got mine), I give the Olloclip a big thumbs-up. I would give it two thumbs up, but MS has staked a claim on one of my thumbs, along with the other fingers on that hand. I still have one functional middle finger with which to salute the disease, though, so here's looking at you, kid……

As always, your critiques and comments are not only welcomed but desired. No need to hold back or be polite, if you think some of these are pure crap just let loose and say so. Conversely, if any of them truly tickle your fancy, well, flattery will get you everywhere. Click on the thumbnail to view a larger image…