Fear Factor

I'm scared.

There, I said it.

Actually, the word "scared" hardly suffices; I guess "terrified" would more fit the bill. Fear in copious amounts might as well be listed as one of the symptoms of MS. I've talked and corresponded with hundreds of MS patients, on topics ranging from treatment options to conjecture about the nature of the disease to the day-to-day strategies we employ to simply get by, and though it's often unspoken, all of these interactions share one inexorable feature: an undercurrent of fear, at times more prominent than others, but even at its quietest, always present.

Multiple sclerosis is a diagnosis brimming with frightening features. Before getting sick, most of us had only cursory experiences inside the world of modern medicine. We'd get the flu or suffer an injury, make the obligatory trip to the doctor’s office or emergency room, and after a period of days or perhaps weeks our association with doctors and nurses would come to an abrupt and welcomed end, the arc of our lives resuming their previous trajectories. Getting hit with the diagnosis of a chronic and serious illness, though, transforms us from occasional patients to perpetual ones, and throws some nasty curves into the course of our lives. Quite suddenly we are faced with a Pandora's box of terror, which once opened spews forth a never ending stream of reasons to be frightened. From diagnostic tests to treatment options to uncertain futures, we are bombarded with physical and psychological body blows that sometimes literally leave us breathless.

When I was going through the diagnostic process, I expected that at some point there would be answers. Someone would tell me what exactly was happening to me and how to fix it. After all, it seemed that every day, on television and in newspapers, I was delightfully infomed of one momentous medical breakthrough after another, a steady stream of scientific miracles brought forth by the shiny whiz-bang machine of modern medicine. But once I found myself a reluctant resident inside that machine, entangled in it like a fly in a web, it quickly became apparent that despite all of the fancy gizmos and sometimes impenetrable terminology, there wasn't all that much substance to hold onto. Instead of concrete answers I was offered a fusillade of "I don't knows"and "We're not sure's", all delivered in a rather self-assured manner that was completely at odds with what was being said.

Although I somehow managed to maintain an outward demeanor of rationality, inside my mind reeled with the gradual realization that all those people in white coats very often more resembled the gang that couldn't shoot straight than the intricately synchronized and intellectually enlightened medical gurus whose image popular culture had propagated all these years. I felt lied to and cast adrift, not by any individual but by the system as a whole. How else is one supposed to feel when told that the only treatments available for a disease whose cause is a complete unknown were drugs whose methods of action were equally as mysterious. In the parlance of the 21st century, WTF?

Since I have progressive disease, I can only imagine the fears and anxieties that go along with the relapsing remitting flavor of MS, not knowing when going to bed whether or not your body will be functioning come the next morning. Might you wake up temporarily blind? Unable to stand? A quadriplegic? I am intimately acquainted, though, with the unholy terror of watching yourself slowly get whittled away, gradually withering on the vine as, quite consciously, the losses just continue mount. I first noticed a slight limp in my right leg almost exactly 9 years ago. Since then I've looked on in horror as that leg slowly became useless, even as my right arm and hand followed its example. Now my left arm and leg are mimicking their right sided brethren, and though internally I scream for them to stop, they appear to be intent on enacting a repeat performance, like a good child turned bad by a naughty friend. I've already watched this movie once, and I really didn't like the way it ended. Fortunately, when my right side eventually reached the point of complete incompetence, my left side was there to take up some of the slack. Now that the left side is going, well, let's just say that if I don't figure out how to grow another arm and leg, the situation might get a tad bit ugly.

What demonoid could come up with such a disease, a fiendish thing that forces you to watch yourself disappear but then doesn't have the good manners to finish you off? One of my greatest fears as a youngster, having been eleven years old when the film Jaws came out, was being eaten by a shark. Well, now I am being eaten by a shark, only it's invisible, takes its good time, and somehow lives inside me. And it's a hungry fucker, seemingly insatiable. As Sheriff Brody says in Jaws, after catching a glimpse of the huge man eater in the water, "We're going to need a bigger boat!" Problem is, none of the well-intentioned shark hunters in the white coats seems to have a clue as to where I can find myself a bigger boat. In truth, they haven't even been able to throw me a life preserver. There are no known effective treatments for progressive disease, and even the new wave of treatments now available to treat RRMS are rife with the specter of horrific side effects, bringing with them, along with their increased efficacy and hope for relief, all new reasons to be terrified.

I am constantly amazed at the courage displayed by my fellow patients. Faced with a potentially paralyzing disease, and with it a terror that can be just as paralyzing, we persevere, channeling all of that raw emotion into life, wonderful, glorious, crazy, mixed up life. Despite days when the simplest of tasks seems insurmountable, we forge ahead, maintaining whatever semblance of normalcy we can cobble together, constantly making the adjustments necessary to navigate an increasingly difficult landscape. Through the Internet and in person, we reach out to each other, offering advice, comfort, and often just the knowledge that there are others out there like us, dealing with similar hardships and plowing through the dread only a fellow sufferer can know. I've seen the emotions engendered by MS turned into incredible pieces of visual art and tremendously moving poetry and prose, all loudly expressing that we are here despite the fear, and though physically diminished our spirits remain defiant.

Sheer terror can be an energizing force, as the medical world is learning through the tremendously transformational patient advocacy being done on behalf of CCSVI research, a movement whose spirited core is animated not only by the horror of the damage the disease may wreak, but also at a dogmatic medical profession that seems stuck in neutral, unable to give up on theories that are treated as fact despite there being little or no evidence to back them. Faced with terror at what is happening to them and frustration with the inability of anybody to do anything about it, patients are educating and liberating themselves, and by doing so becoming a powerful force of self advocacy. CCSVI may or may not prove to be the turning point we fervently wish for, the jury is still out, but at the very least the patient movement behind the CCSVI tsunami has flipped the traditional patient-doctor relationship on its head, and no longer will patients placidly accept answers that simply don't make sense. It is the terror born of the disease that has emboldened patients, and all of that focused energy has shaken the walls of a medical establishment that too often puts profits ahead of people, a situation that we the terrorized will plainly stand for no longer.

In the end, when faced with a reality that the "healthy you" would have found just about unimaginable, terror is a completely rational reaction. There can be no denying it, and though sometimes it is felt more keenly than others, it is our constant companion, worn as a second skin, permeating all that we do. But terror need not be a solely negative force. As with all things in nature, the darkness of fear is accompanied by the light of courageousness, as is demonstrated every day by those of us who by sheer power of will make it through another stanza in the face of pain, weakness, and frustration, more often than not speaking nary a word of the terror within. Sometimes we cry, sometimes we scream, but most of the time we just go about our business as best we can, and that may be the most courageous act of them all.

The Long View

In the past, I've written much about the need to break down the potentially overwhelming tide of emotional and physical strain that comes part and parcel with chronic progressive illness into smaller, more easily navigated bits, by living in the moment, consciously creating your own reality, and sorting existence into manageable servings. Depending on the amount of crap being shoveled your way at any given time, this can mean taking it day-to-day, hour to hour, minute to minute, or sometimes even second to second.

Of course one can't help but look forward occasionally, as it's quite necessary to do so in order to plan treatment strategies and live your life wisely, but for the most part staying rooted in the now allows a person to fully experience all the good that each fleeting moment has to offer, and not let precious time slip from their grasp while the mind is focused instead on a past that can't be changed or a future that can never accurately be divined. As my disease has progressed, I've found my attempts to fully occupy the present have become more difficult, even as they simultaneously become all the more vital. Efforts at mental discipline and maintaining clarity of mind are rewards unto themselves, though, and without them I very well might have gone barking mad years ago.

Throughout my life, I've often found comfort in a different strategy, one that instead of attempting to untangle life's complex web of emotions and circumstances and break them down in order to escape their snares, tries to take a bird’s eye view of things, understanding that my life is of relatively tiny significance in the context of the long view of human history, and tinier still as part of a cosmos so complex that it is literally beyond the limited powers of our understanding. It may sound a little morbid, but even back in my healthy days I found nothing so affirming as visiting old cemeteries, peering at headstones bearing the names of people long forgotten, trying to imagine the distant lives of those in the ground whose secrets were forever lost to time.

I spent a lot of time in New England back then, a region of the country peppered with graveyards dating back centuries. Gazing at weathered stone markers chiseled with names and sets of dates tells you almost nothing about the people they were meant to memorialize, other than the gender of the dead and the span of their lives. Yet each engraved stone represents the richness of a singular human life, one that was once filled with dreams and desires, failures and triumphs, moments of great heartbreak and also those of buoyant joy. Despite that cacophony of the assembled experiences and emotions that make up the sum of a lifetime, now there is nothing but silence, just the barest of reminders that a person whose name had not been uttered for perhaps hundreds of years had once graced this ancient earth.

When I lived in South Florida, back in the 90s, I developed a very close relationship with my paternal grandmother, a woman with a larger-than-life personality who had the unusual ability to be incredibly endearing and tremendously maddening all at the very same time. She was extraordinarily generous to those she loved, but nursed wicked grudges over perceived slights and insults that were decades old. When one of her perceived nemeses passed away, she was always quick to chime in with a "May they rest in pieces!"

I tried to have dinner with her about once a week, and very few of those meals were ever boring. Over the course of the roughly 10 years I lived in the Sunshine State, I amassed enough stories involving "Grandma Smaidee" to fill a novel, one which I really should write. My grandmother's emotions knew only one speed, pedal to the metal, and she enjoyed good food and good booze. She had the heart of the lion but at times could be tremendously timid, and was one of the least self-conscious people I've ever known.

Of all the things she loved and valued, chief among them was beauty, in objects as well as people. A great beauty herself, it was truly difficult for her to understand that beautiful people were not always  as attractive on the inside. When I once told her that a particularly winsome girlfriend of mine had cheated on me, she just about refused to believe it, and when I finally convinced her of the fact, she told me it was my own fault for going out with a shiksa (yiddish for a non-Jewish woman). That my head didn't explode at that moment can only be testament to the thickness of my skull.

My grandmother died in 2006, and as I had become so close to her, the family decided to leave it to me to choose the inscription on her gravestone. She was buried in a family plot, so she didn't have a traditional headstone, just a small stone marker on the ground which didn't allow for many words. All of those around hers said things like "loving husband, beloved wife, cherished son”, etc. They conveyed nothing of the actual person who was buried 6 feet below, and might well have read "generic human being". After giving it much thought, I decided her inscription should read "She Walked in Beauty…”

I'm not sure if she'd be delighted or incensed with my choice, but I imagined that 50 years hence, someone walking by might notice that my grandmother's marker was different than everyone else's, and pause for a moment to think about what kind of woman might inspire those words.

Though we all occupy the center of our own individual awareness of the universe, in which the circumstances of our lives take on seeming momentous import, the reality is that in 100 years the planet will be populated by all new people, and except for a very few of us, in 2112 none now living will even be remembered. Sure, our names may occupy a place on some antique census list or on someone's family tree, but the essence of who we were, all of the majesties and follies that made us human, will have long been forgotten. Given that fact, how downright silly it seems to take ourselves as seriously as we often do, as if our trials and travails have any meaning beyond the small span of time that we happen to inhabit in the long march of humanity.

Faced with this ultimate truth, allowing misery to snatch any of the scant few moments granted us seems quite foolish indeed, whatever pitfalls and traps may lay in wait for us. Of course, spending every waking moment happy may be due cause to certify insanity, but given a dollop of perspective, and secure in the knowledge that you yourself are mere ephemera, it's clear that one must always strive to let go of the dark and embrace the light, even when stuck in a dimly lit room.

Being given a dread diagnosis shocks us with the fact of our own mortality, a universal certainty that when healthy we mostly choose to ignore, almost literally whistling past the graveyard. While no one wants to dwell on the fact that their life is but a speck in the grand scheme of things, acknowledging  that fact goes a long way towards living mindfully and realizing the preciousness of each moment we spend on this side of the grass. Although circumstances might not have played out quite as we had planned, fighting against the currents of life only leads to exhaustion and eventual capitulation.

This is not to say that we should surrender to misfortune, but rather we must learn to appreciate the updrafts and avoid the downdrafts, and like a glider soaring high, rise above the hills and valleys below. This is almost never easy, and at times can be awfully damned hard, but to do anything else is to lose control of the short gift of time with which we have been bestowed. I'm of the belief that quality of life trumps quantity, but as long as there is quality to be found, we owe it to ourselves to find it. Live well, as the light of existence is brief, and the darkness that follows an impenetrable mystery. As a friend once told me, life is uncertain, eat dessert first.

Bits and Pieces: Weird Science Edition

Regular Wheelchair Kamikaze readers have probably noticed that the blog has undergone several design changes during the last few weeks. Yes, I have been obsessively changing the look of the blog. I admit that, and I know that admitting that I have a problem is the first step to recovery.

I mentioned a while ago that I changed blog templates in order to facilitate some of the newer features being offered by Blogger, the home of Wheelchair Kamikaze. These new templates offer a variety of customizable looks, and I just can't seem to stop myself from compulsively customizing the damn thing. It's just never quite right. Take this latest edition, for example. I don't know, but to me it just seems a little too white bread. It lacks pizzazz, and I'd like the blog to be pizzazzy. The problem is, too much pizzazz and things really go kablooey. There's a very fine line between pizzazz and visual vomit, and I'm trying to strike that perfect note. Only now I fear I've veered too far into the mundane. I think I'm suffering from "Does This Blog Design Make My Ass Look Fat?" syndrome. So, please bear with me, as I expect there may be more changes to come.

Right then, consider yourself forewarned. It's time once again for my monthly (or so) collection of various MS related news items, gathered during my recent meanderings around the web. Sometimes I'll throw in some non-MS related news items, but I'm pretty sure this month's grab bag is all MS related. I've included a few odd bits, just add some, um, pizzazz.

Off we go…

♦ Since CCSVI always seems to be of interest, let's start there. The second annual ISNVD (International Society for Neurovascular Diseases) Conference wrapped up last month, and the organization has posted a group of videos featuring some of the notables who presented at the conference, making for some very informative viewing (click here). Thank you, ISNVD.

A terrific primer on CCSVI treatment, offering a great summary of the basic hypothesis and the research surrounding it, can be found here (click here).

Some interesting charts tracking the rise and fall of Google searches looking for "CCSVI" can be found here (click here), courtesy the fine folks at Shift.ms. More on them later. Looks like interest in CCSVI may be waning, which I suppose is only to be expected given the huge amount of hype the discovery has received over the last two years or so. I'm always surprised at how many patients I meet in person (as opposed to the Internet) who don't know much about CCSVI, so it's not like the entire MS universe has researched the subject. Still, the firestorm set off by CCSVI when it first caught the interest of the Internet MS population was bound to lose some of its sizzle, a phenomenon which is visually reflected in these charts. It is telling to note that the US does not even make the top 10 countries searching for CCSVI, which I believe is indicative of the mysterious silent treatment CCSVI has been given by the news media here in the United States.

♦ Shift.ms (click here) is a Multiple Sclerosis social networking site specifically designed for younger patients dealing with the disease. It's hard enough handling this dog from hell as an adult, my heart really goes out to those teens and young adults trying to navigate those at turns difficult and wonderful years with a chronic disease thrown into the mix. If you are a young person dealing with MS, join up and share the burden. If you know a young person with MS, please direct them to the site, which is relatively new and looks like it will be a wonderful resource for that demographic. The good people who organized the site have posted videos of an MS Information Day recently held in London, which includes a wide range of topics of interest to all MS patients regardless of age that is well worth checking out (click here).

The National Multiple Sclerosis Society will be opening the doors to its own social networking site, MS Connection, on Monday, March 12 (update: the site is now live, click here). The site will be packed with features, and is meant to serve much like a Facebook for PwMS. Now, I know that many of you out there have mixed feelings about the NMSS these days, but MS Connection has the potential to be an extremely valuable resource for interacting with your fellow patients. The site will be censorship free (as long as gross vulgarities are avoided), and it's often been said that the best way to change an organization is from within. Keeping in contact with fellow MSer's of all stripes is key to maintaining your sanity while grappling with the disease, and MS connection will help you do just that. I've been able to preview the site (yes, shockingly, I haven't been blacklisted by the NMSS), and can tell that lots of work went into this effort, which is well designed, user-friendly, and actually pretty darn neat (yes, I did just use the word "neat". I'm wearing a helicopter beanie and knickers as I write this).

♦ This interesting graphic, brought to my attention last week by a WK reader, names The Top 10 Medical Inventions of the Last 50 Years (click here). I won't ruin your anticipation, but I actually met the inventor of The Top of Medical Invention of the Last 50 Years last month. Coincidence, or proof that there is order to the universe?…

♦ The use of Histamine to treat multiple sclerosis has a long and controversial history, and some recent research may lend some scientific credence to the practice (click here). First put into widespread use in the 1950s by Dr. Hinton Jonez (click here), who treated thousands of MS patients at his clinic in Tacoma, Washington, with great reports of success, the use of Histamines to treat MS has held on along the fringes of the MS community for years, with some people still swearing by its effectiveness (click here). The most common form of Histamine used by MS patients is Prokarin (click here), administered as a patch, which can be obtained from compounding pharmacies. Please note, many consider the use of Histamines quackery, and I've never used it myself. But its use seems relatively safe, and if one in 1000 patients can find some benefit in it, it's worth a mention. Any port in a storm, you know?

While we’re on the subject of alternative medicine, a trial is underway that is studying the use of parasitic hookworms as a possible MS therapy (click here). The little buggers are administered in a patch, from which they burrow into the skin of the test subject and eventually make their way into the gut, where they take up residence and, according to the theory, help modulate the immune system. Similar therapies have been tried, with success, on patients suffering from Crohn's Disease, and despite the yuck factor, there is method to this madness.

The theory behind the use of parasites to treat autoimmune diseases is called the "hygiene hypothesis" (click here), which postulates that the ultra-sanitary conditions of modern Western societies has eliminated parasites from the human body, thereby throwing out of whack our immune systems, which developed over millions of years around the presence of intestinal parasites. In the absence of these parasites, so goes the theory, our immune systems have time on their hands, and you know what they say about idle hands. The geographic distribution of MS lends support to this notion, as MS is most prevalent in developed countries, and nations whose populations retain their symbiotic relationship with parasites are notably absent of MS as well as a host of other autoimmune diseases.

Would I personally try this therapy? Heck yeah! As I've stated before, at this point I'd crawl up the rectum of a dyspeptic rhino if there was evidence it might cure my disease.

♦ Ah, now onto one of my favorite topics, asinine medical research. A study out of the University Of Washington looked at the concern about falling among MS patients (click here). Shockingly, they found a majority of MS patients are concerned about falling, and even restrict their activities as a result of those concerns. HOLY CRAP! STOP THE PRESSES! You mean to say that patients suffering from a disease that weakens limbs, effects balance, and causes dizziness are worried about falling? Well, knock me over with a feather (and believe me, you could)! Researchers conducting such studies appear to be required by law to create acronyms, so this bunch of Einsteins refer to "concern about falling" as CAF. Their careful analysis of 575 patients found that 62% reported CAF, and that 67% restricted their activities as a result of CAF. I'm very curious about those 5% who don't report any CAF yet still restrict their activities. Are they psychic? Do they take their umbrellas with them on sunny days?

A further insight was that "While the researchers found that fall risk increased with declining mobility function, at a certain threshold, further declines in mobility function were associated with fewer falls, possibly because of reduced fall risk exposure." In other words, as a person's body becomes more screwed up due to MS, their risk of falling increases, until they become so freaking gimpy that their asses get stuck in wheelchairs, at which point their risk of falling decreases dramatically. WELL, HOWDY! Who would've ever thought that people sitting wheelchairs have less chance of falling than people who will very soon need to be in wheelchairs but are still gamely struggling to remain upright despite the increasing uselessness of their legs? Brilliant!

I want to conduct my own research study. I'd like to test the CAF of the researchers who did this study the moment before I drop bowling balls on their heads. And then let's see how their behavior is modified after they return from the emergency room. Jackasses.

♦ One last item. If you happen to wake up one day talking with a foreign accent, don't worry, it's probably just your MS (click here). Seems that Foreign Accent Syndrome has been documented among MS patients, sometimes even as their first symptom (click here). If I ever develop this symptom, I hope I wind up talking like Boris Badinov, of Bullwinkle fame (see below).

CCSVI: Three Years On, Some Thoughts and Observations

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It seems almost incredible, but it's been nearly 3 years since I wrote my first Wheelchair Kamikaze post on CCSVI (click here). At the time of that first post, CCSVI had hardly been heard of outside of some researchers in Italy and a few dozen patients debating the merits of the hypothesis on an Internet forum. Today, CCSVI has become a patient driven social media medical phenomenon. An estimated 25,000-30,000 patients have already undergone CCSVI treatment, researchers from around the world are investigating the hypothesis, and the surgical treatment of CCSVI has become a thriving industry. CCSVI has certainly come a long way, but in many ways we've only taken the first steps on what could be an epic journey.

Last week, the International Society for Neurovascular Disease (ISNVD) held its second annual scientific meeting, which lasted five full days, in Orlando, Florida. A tremendous amount of information about the nature and treatment of CCSVI was exchanged by researchers and physicians, a compendium of which can be found in a 106 page online PDF publication put out by the Society (click here).

Of most interest to patients are undoubtedly the treatment outcomes reported by several CCSVI treatment practitioners (which can be found on pages 62, 79, 83, 84, 86, and 87 of the PDF), which displayed a wide variety of treatment outcomes, but do seem to suggest several identifiable trends. It appears that quality of life issues (fatigue, cognitive issues, heat sensitivity) saw more benefit post treatment than mobility related issues, and that RRMS patients fared better than patients suffering from SPMS or PPMS. None of these studies was double blinded, all being observational and most relying on self-reported information, which can lead to inaccuracies. Still, the findings generally fall in line with some of the few double blinded studies that have been done, such as a recently completed study done in Italy (click here). CORRECTION:an anonymous reader points out that this Italian study was in fact not double blinded, and just used an independent physician to evaluate EDSS scores. Thanks for the heads up.

The meeting did bring into focus the fact that the CCSVI treatment protocol is far from standardized, with physicians varying in opinion on issues ranging from which veins to treat, whether treatment should concentrate on valves rather than the veins themselves, the use of intravascular ultrasound, and other important issues, a list of which can be found on pages 104-106 of the PDF document linked to above. There were quite a few presentations on the use of noninvasive imaging techniques (Doppler Ultrasound and MRV technology) to diagnose CCSVI, with the consensus appearing to be that neither method was especially accurate, except for extremely specialized MRV protocols that are practiced at only a few facilities. One leading CCSVI practitioner went so far as to state that he no longer requires his patients to undergo Doppler Ultrasound investigations before venoplasty, since the ultrasound results were found to be so prone to error (page 63 of the PDF).

In addition to presentations involving CCSVI treatment techniques, some important observations about the nature of the condition were also presented. The effects of reduced blood flow through the brain were discussed, as was the possible connection between bloodflow disruptions and a breakdown of the blood brain barrier, and the role of iron deposition in the MS disease process. In all, my impression (keeping in mind that I did not attend the meeting) is that the findings presented at this year's ISNVD scientific meeting were more evolutionary than revolutionary, which I suppose is something to be expected. The explosion of interest in CCSVI amongst interventional radiologists and research physicians must logically lead to attempts to fill in the many gaps of knowledge that remain in regards to CCSVI, before more dramatic leaps in understanding can be accomplished.

This eruption of interest in CCSVI within the interventional radiology community is in some ways a double-sided sword. On the plus side, it has given patients access to treatment, which in the early days was extremely hard to come by. Today, patients have their choice of treating physicians, and must do their due diligence when choosing which physician in whose hands to place themselves. As noted above, treatment techniques and philosophies vary widely from physician to physician, and patients exploring the possibility of CCSVI treatment should not be shy about asking questions in an effort to find a doctor whose treatment modality best fits their comfort level.

On the potentially negative side, CCSVI has become big business. With CCSVI treatment procedures costing about $10,000, and somewhere between 25,000-30,000 patients already treated, a little math reveals that treating CCSVI has already generated hundreds of millions of dollars in gross revenue for treating physicians. Yes, those procedures covered by medical insurance probably don't get reimbursed at the full rate charged, but this is likely made up for by patients who have undergone multiple procedures because of CCSVI's ongoing problems with restenosis. Given the fact that the number of treated patients represents only a tiny percentage of the worldwide MS population, it's easy to see that CCSVI treatment could quickly develop into a multibillion-dollar a year enterprise.

The David vs. Goliath narrative that has driven the CCSVI story thus far may soon become obsolete. To be sure, the neurology community still remains incomprehensibly steadfast in its negativity regarding CCSVI, but this is becoming counterbalanced by the enthusiasm of the interventional radiology community, and, I suspect, by the interests of the medical device manufacturers, who also stand to profit greatly should CCSVI become an accepted treatment option for MS patients. Despite the fact that very legitimate issues remain regarding the efficacy of CCSVI treatment and the lack of a consensus as to optimal interventional techniques, CCSVI treatment is being aggressively marketed by several US and international treatment facilities, which should raise some ethical questions.

Until issues with effectiveness and technique are satisfactorily answered, the CCSVI treatment procedure must be considered an experimental one, a fact that should not be lost on patients who are understandably desperate to address their illness but are faced with a dizzying array of statistics, patient testimonials, and marketing efforts by for-profit ventures. In a very real way patients who choose to undergo CCSVI treatment at the current time are guinea pigs, a fact that I understood explicitly when I underwent my venoplasty back in the dark ages of CCSVI, almost two years ago. Although we've come a long way since then, in some ways the procedure remains as experimental as ever, as physicians treat a much wider array of veins much more aggressively than they did back when I underwent the procedure. Though the treatment is a minimally invasive one, it is not without risks, as is evidenced by the contingent of patients who have experienced clotting issues and vein thrombosis in the aftermath of their procedures. Indeed, one of the presentations at ISNVD highlighted a patient whose condition worsened after treatment (page 89 of the PDF), a rare occurrence to be sure, but a possibility that must factor into the decision-making process of patients considering venoplasty.

One of the most volatile controversies raging on CCSVI forums and social media sites is whether or not the condition is a cause or effect of multiple sclerosis, with those arguing for CCSVI as cause often citing the fact that the venous abnormalities being found appear to be congenital (developed in the womb) in nature. I am unsure as to the question of cause vs. effect, although I do believe that if CCSVI is a cause of MS, it is only one of many factors involved in the initiation of the disease. Even if the vascular defects being found in the veins of MS patients are congenital, this does not necessarily mean they are a cause of multiple sclerosis. There are many congenital defects that cause no adverse effect whatsoever, and I'd venture to say that many of us have some physical trait somewhere in our bodies that is outside of normal variance.

We've all heard stories of world-class athletes suddenly collapsing during or directly after extreme physical exertion. Quite often, the follow-up story is that the unfortunate athlete was a victim of a congenital heart defect, which would never have been noticed had that person not pushed his body to physical extremes. Had they not been athletes, they very well could have lived a normal life span. Likewise, a person born with congenitally abnormal ligaments in their knees might never know of their condition unless they encounter an environmental element (such as a hit to their knees) that brings their abnormality to the fore, in the form of a knee injury more severe than that which might have been suffered by a person with "normal" ligaments. Given the varied elements that have been linked to MS (infectious agents, exposure to toxins, vitamin deficiencies, genetic markers, etc.), a likely scenario is that vascular abnormalities play a part in predisposing an individual to developing MS when exposed to an unfortunate storm of other factors.

To my mind, it is becoming increasingly clear that, despite our greatest hopes, CCSVI is only a part of a much bigger and more complex MS picture. Precisely how big a part it plays is still open to question. Although CCSVI treatment does appear to benefit many patients, it has also been shown to be of little or no value to many others. CCSVI does not explain some of the factors that have previously been established about MS, such as the geographic distribution of the disease (click here), the male-female ratio that is well known to exist in MS (click here), the existence of "multiple sclerosis clusters" (which would seem to point to an infectious cause-click here), or the unmistakable link between MS and Epstein-Barr virus (click here). Nevertheless, CCSVI offers the promise of opening up whole new areas of research into the causes of, and treatments for, multiple sclerosis. Certainly, interested MS patients should investigate the possibility of CCSVI treatment, and make a sober assessment as to whether now is the proper time for them to jump in.

There are several ongoing research projects that should further illuminate the CCSVI picture scheduled to publish results later this year, but further robust and expeditious research is desperately needed. It is essential that we ascertain just how prevalent CCSVI is in the healthy population, gain a better understanding of the role, if any, of vascular abnormalities in the MS disease process, determine which MS patients respond best to CCSVI venoplasty, refine the techniques used to treat CCSVI, reduce the number of patients who experience restenosis, and see the development of surgical implements specifically designed to treat venous abnormalities. Neurologists need to get on board to provide interdisciplinary expertise to CCSVI studies. After all, whatever the results of the research, positive or negative, answering these questions can only be in the best interest of their patients.

CCSVI has come a long way, but there is still a long way to go. Thankfully, the pace of CCSVI research is gaining momentum, and hopefully we will see answers to many of our questions sooner rather than later. In the meantime, my best advice is to educate yourself to the best of your ability, be your own most powerful advocate, and make treatment decisions based more on reason than emotion.

Another Medical Industrial Outrage: Vital Drugs In Short Supply Because of Low Profit Margins

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Well, here's a story that warms the heart. The chemotherapy drug methotrexate, which has been used to treat progressive forms of MS and is vital for the treatment of perilously ill juvenile leukemia patients, is in such short supply in the United States that cancer patients just might start dying due to its scarcity.

Is methotrexate some exotic new compound facing manufacturing difficulties due to the complexity of its chemistry? Does the shortage stem from a sudden rise in the population of patients suffering from a certain type of leukemia? Has the drug been found to be potentially harmful, or difficult to work with? The answer to all of these questions is no, and, shockingly, the underlying reason behind the shortfall of this essential medication is that manufacturing it simply does not generate enough profit.

Methotrexate is an old drug, first developed over 60 years ago. The patents that protected the original maker of the drug from competition expired decades ago. Therefore, the drug is now available only in generic form, and in a pharmaceutical universe where newer drugs can fetch over $100,000 per patient per year, methotrexate costs only a few bucks per dose. When used to treat patients suffering from Acute Lymphoblastic Leukemia, a particularly virulent form of the leukemia which typically strikes children from 2 to 5 years old, the drug can cure over 90% of the estimated 3500 juveniles diagnosed with the disease in the US each year. Great, right? A cheap, effective drug that successfully treats a horrible illness that kills children, what better example could there be of the triumph of modern medicine? Well, not so fast. Turns out the saga of methotrexate and other generic medications also suffering shortages are a shining example of a plague that infects the medical industrial complex that has evolved in this country over the last several decades: flat out greed.

As has been widely reported (click here), supplies of methotrexate are within weeks of running out. Apparently, one of the four factories manufacturing the drug was shut down because of "significant manufacturing and quality concerns", according to the company that runs the plant, Ben Venue Laboratories. Another article (click here) states it much more graphically. An expert on drug shortages explains that the FDA found "mold on the walls and rust from machinery falling into the vials. It really provides a very grim picture of a crumbling factory." Not exactly the image you want to have in mind the next time you reach for that bottle of generics in your medicine cabinet, but apparently factories manufacturing such drugs are the sweatshops of the pharmaceutical industry.

The shortage of methotrexate is far from an aberration. Methotrexate is one of 287 drugs that have been in short supply this year, up from 61 in 2005 (click here). The vast majority of these drugs are cancer medications, and although some of the shortages can be attributed to a scarcity of the raw materials required to make them, the bulk of the problem resides in the fact that many of these drugs are generic, and don't generate much profit for the companies that manufacture them, or the doctors who prescribe them.

Unlike most patients, who by their drugs from pharmacies, cancer patients often purchase their chemotherapy drugs directly from their oncologists, a system that developed decades ago, when only oncologists would handle the toxic materials and the drugs were relatively cheap (click here). Some oncologists rely on drug sales for half of their yearly revenue. These days, Medicare reimburses oncologists 6% above the wholesale cost of the drug, giving the physicians ample reason to prescribe newer, brand-name drugs (more expensive, more profit) rather than older generic drugs (less expensive, less profit). In turn, the demand for lower-cost generics has been driven down, making their production a low profit venture.

Problems arise when there are no newer, more expensive substitutes for the generic drugs, as is the case with methotrexate and the treatment of Acute Lymphoblastic Leukemia. To make matters worse, drug manufacturers are currently not required to inform the Food and Drug Administration when supplies start to run short, so the FDA might have opportunity to ask other makers to ramp up production before the drugs in question run out, as happened earlier this year with Doxil, a compound used to treat ovarian cancer. A bill introduced in the U.S. Senate in this month would require drug manufacturers to alert the FDA of any pending shortages, or if they were ceasing production of a drug. The FDA, though, has no enforcement authority in these matters, and can't dictate the manufacture of drugs in short supply. In the case of Doxil, which was in dangerously short supply for about eight months, the FDA recently worked out a deal with an Indian pharmaceutical manufacturer to supply the US with a replacement drug.

Clearly, the system is seriously broken. It would be bad enough if we were talking about over-the-counter cold remedies, but the drugs in question save lives every day, or at least every day that they are available. Our system of medicine is rotting from the inside out due to the corrosive siren song of hugely profitable blockbuster medications and dizzyingly expensive treatment protocols, which admittedly can be of great benefit to some patients, but have fundamentally changed the way medicine is researched and practiced in the USA. The Europeans have handled the similar situations by mandating higher prices for generics, thereby making them more profitable. Brand-name drugs are generally cheaper in Europe as well, and as a result European countries have not experienced shortages of these same cancer drugs. For better or worse, the US has no such mechanism to dictate prices, and there is no easy fix to the problem. One has only to imagine the agony of a parent watching their child die for lack of a medication to understand at a guttural level the huge import of this problem. What a god-awful mess…

One

One is the loneliest number, at least according to a song written by Harry Nilsson in 1967 (and made famous by Three Dog Night in 1969). Though social interactions are a basic emotional necessity, for a patient plagued with increasing physical disability along with fatigue and an assortment of other symptoms, sometimes one is just about all you can handle. Chronic disabling illness often brings with it a troublesome companion: isolation, a condition that is often feared, but which has a more benign companion, solitude. The problem of isolation/solitude is a paradoxical one; although in anticipation loneliness is often dreaded, there are times, when caught in the thicket of illness, when a patient just wants to be left alone.

MS is a transformative disease, and the changes it brings can leave the afflicted feeling like some strange new breed, with the memories and inclinations of the old conflicting with the stark physical and emotional realities of the new. The disease progresses at different rates for different people. Some can remain quite active participants in healthy society for years or even decades, while others find themselves considerably disabled and their lives significantly impacted in a relatively short period of time. Whenever it occurs, when the patient is cleaved from the day-to-day existence they once took for granted, a sense of otherness can set in, as what had been a daily routine becomes anything but. Activities and actions that had once been accomplished with hardly a thought slowly become difficult and then impossible, and though the person going through these changes may be surrounded by well-intentioned friends and family who suffer their own emotional distress at the plight of their stricken loved one, the full emotional toll of mounting physical deficits can only be absorbed by one, the patient themselves.

Like the main character in Franz Kafka's novella "Metamorphosis", who wakes up one day to find himself transformed into a huge cockroach, patients experiencing progressing disability find themselves living through alarming change. Though this change doesn't occur overnight, as in Kafka's tale, it certainly can feel as if it comes on suddenly, and the physical transmutations taking place are inevitably accompanied by troublesome psychological companions. Nine years ago I was happily taking my pooch for a long brisk walk on a very cold winter’s day when I suddenly realized I was limping; fast forward to today and it's a treacherous and painful struggle to take 10 steps with cane gripped tightly in hand, and more often than not my sorry ass is planted firmly in the seat of a wheelchair. Nine years may sound like a substantial amount of time, but despite the innumerable trials and travails of the intervening years, it feels as if I took that long walk only yesterday. And though I've tried to handle my situation with as much grace, courage, and humor as I can muster, deep inside I cannot deny there exists a well contained but always present silent scream (click here to hear my silent scream).

Of course, it's of the utmost importance to stay connected with the world at large, regardless of your physical state. There is substantial danger in allowing the psychological tentacles of the disease to have their way, grabbing and dragging the emotional focus of the patient deep inside themselves. Concentrating on every new weakness, numbness, or deficit can cast a crippling spell, a self-perpetuating cauldron of compulsive anguish, whose only antidote is social interaction. The comforting give-and-take of a friendly conversation or the diversion of an outing whose sole purpose may simply be to lay eyes on other human beings can truly be a much needed balm for the soul, a reminder that though the body may be broken the spirit remains intact, and that the world is still filled with wonders big and small, even if they must sometimes be dug out from under a huge pile of crap.

Yes, human interaction is key, but the problem is that being sick takes up so much damn time. As levels of disability increase, so too does the time it takes to do almost everything. Whereas an impromptu get together with a friend for lunch may have once made for a happy couple of hours, for the disabled there is no such thing as impromptu. The simple act of getting dressed, which once was about as problematic as breathing, now presents hurdles and obstacles that require a preconceived tactical plan, especially in the colder months when such hobgoblins as sweaters, socks, coats, gloves, and scarves come into play. Depending on the patient, showering without assistance can be a daredevil high wire act or an absolute impossibility. Even if there has been advanced planning, after going through the effort of readying oneself for a guest appearance in the outside world, that day's allotment of energy may have just about been exhausted. The fatigue patients experience is not any kind of normal weariness, but an at times absolutely complete and debilitating exhaustion of mental and physical energy, which no amount of willpower can overcome. Many times, the only place I want to go after getting dressed is right back to bed.

Even the prospect of talking on the telephone can sometimes be daunting, especially to folks with whom you haven't communicated in a while. After "Hello" comes the inevitable "How are you?", a loaded question if ever there were one. It feels incredibly disingenuous to answer with a token "Oh, I'm okay", or "I'm hanging in there", but for sure the person on the other end of the line doesn't want or need to know the full dossier of your afflictions. Discussing the details of a well friends active life can sharpen focus on the deficiencies of your own, and despite honest attempts at sympathy, hearing of another's problems at times makes me want to shout "Hey, want to trade?" Shooting the breeze, sharing some laughs, and talking about anything other than illness and medicine can be incredibly uplifting, but as much joy as talking to old friends can bring, at times the prospect is overwhelming, the effort required tapping deep into the paucity of energy that is a constant companion. I must admit I have an embarrassing number of calls from dear friends for whom I have deep fondness that I've left unreturned for far too long.

Like many patients, I'm blessed with a social situation (in my case, a wonderful wife and caring family and friends) that keeps my periods of solitude, which I've come to quite appreciate, from morphing into isolation. Despite mounting physical difficulties, with effort I'm still able to get out and about on my own, to pursue my photography or just to break a bout of cabin fever. Still, as the progression of my disease continues, such outings require increasing effort, and I find I value time bereft of social responsibilities quite highly, hours spent meeting nobody's expectations but my own. I do know of many patients, though, who do suffer from isolation, whose lives are plagued not only by physical illness but by soul wracking loneliness, and to them my heart goes out. The Internet, through chat rooms and forums, offers opportunity to connect with others, if only in a virtual sense, but I know from experience that virtual friendships can indeed develop and deepen into surprisingly multifaceted relationships.

One is the loneliest number, but one can also be a source of solace as well. Persevering through chronic illness is a complicated affair, and navigating its hills and valleys, even with the solace of companions, is in many ways a solitary matter. Though others may help buffer the blows, ultimately each patient's experience is unique, and the mechanisms for coping theirs alone. Solitude and isolation are two sides of the same coin, a currency that can be prized or shunned, and in the convoluted and confused world of chronic illness, the line between the two can be fragile and blurred. Despite the difficulties imposed by illness, our connections to others are in many ways what keep us human. If isolation has too often become your domain, please make efforts to reach out; if you recognize isolation in others, please make efforts to reach in. Although the human state dictates that ultimately we all are alone, so too we are all in this together.

Related articles

• 40 Best Quotes About Solitude (ecosalon.com)

Don't Get Stuck in the Suck

(For those who receive Wheelchair Kamikaze via e-mail, this post contains a video, which can only be viewed from the WK website)

In one of my recent posts, I mentioned that having a progressively crippling disease royally sucks, but that somehow I've managed to learn how not to get stuck in the suck (click here). I thought I might expand on that idea some, in part because it's a hard yet vitally important lesson to learn, but mostly because I'd like to see the expression "Don't Get Stuck in the Suck" emblazoned on T-shirts, billboards, beer cozies, and ladies undergarments from Paris to Beijing.

I've seen and heard some folks with MS express the sentiment that their getting sick was somehow a blessing, in that it gave them a sense of perspective and allowed for a richer existence intellectually, spiritually, and philosophically. Well, more power to those people, but from where I sit watching myself slowly wither away just flat out sucks. In one of my very first blog posts, I wrote that MS sucks big fat hairy monkey balls (click here). Now, almost 3 years deeper into the progression of my disease (which is now a mystery illness (click here)), I can say with utmost surety that whatever ails me sucks something far more disgusting than big fat hairy monkey balls. At this moment I'm having a hard time thinking of anything more disgusting to suck, so let's have some fun and make this an interactive exercise. Please leave your ideas for something that's more disgusting than big fat hairy monkey balls with which you equate having your disease in the comments section below this post. Hopefully, your efforts will be both cathartic and extremely entertaining for all involved…

Okay, given that having a chronic progressively disabling disease sucks -insert super disgusting object here-, how does one saddled with such an affliction not get stuck in the suck? Well, it takes a lot of mental discipline, as well as a liberal dash of the perspective that being sick does indeed impart. Don't get me wrong, along with the "Blessed with MS" people, I readily acknowledge that the disease has led me to live a much more enlightened life, but given my druthers I'd happily go back to my former sometimes miserable and largely unenlightened but physically healthy old existence. If I could take with me just a smidgen of the wisdom that's been pounded into my head by dealing with a chronic progressive illness, all the better, but that certainly wouldn't be a prerequisite for a visit from the good health fairy. Unfortunately, I don't think the good health fairy is going to be flitting around my bedroom anytime soon, so in order to avoid getting stuck in the suck I've found that it's extremely important to not compare your circumstances to anybody else's, and especially not to yourself as you once were.

While zooming around the streets of New York City in my wheelchair, I'm usually able to keep myself amused and engaged by simply soaking up the sights and sounds of the city whizzing by, and occasionally scaring the living crap out of unsuspecting pedestrians as I careen past them just a wee bit too close. I've only actually hit maybe three people, but I'm convinced they were all really bad people. When I'm in Central Park or down by the Hudson River, I'm typically busy taking photos, watching and listening to street performers, taking in the scenery and parade of humanity, or a combination of all three. I also consciously try to not project an "I'm a victim" vibe, and approach these activities con mucho gusto, or at least with as mucho gusto as I'm feeling capable of on any particular day, which sometimes is more lesso then mucho.

This combination of outside distractions and inner focus usually keeps me from getting ensnared in any self-defeating mind traps, but occasionally the shields do go down and I find myself overcome with waves of tremendous envy for the swarms of people who can simply walk, jog, dance, ride a bike, lay out on a bench under a shady tree placidly reading a book (trying to read a book with only one working but wonky hand is damn near impossible), stroll hand-in-hand with their partner while lost in idle chatter, or do any one of the infinite number of things that I once accomplished without thought or effort but now are completely beyond my shrinking repertoire of tricks. At such moments all it takes is just a gentle push, and down into the vortex I tumble, pummeling myself from the inside out with a toxic mix of regret, chagrin, anger, helplessness, fear, panic, and dread. Into the darkest black hole I plunge, sucked in by the almost inescapably wicked gravity of big fat hairy monkey balls.

It's very hard to climb out of such a pit, and extricating myself usually entails screaming, crying, cursing the universe, and driving my wheelchair even more recklessly than usual (again, taking care to hit only really bad people). When caught in such a trap, you must not allow yourself to inflame the situation by getting down for being down, or else you'll get caught in a vicious loop, a snake eating its own tail. Admittedly, when dealing with a heinous disease, it's impossible to never plumb the depths, but it's imperative to keep such forays to a minimum. To do that, to avoid getting stuck in the suck, one must exercise control over the thoughts and emotions that create each person’s own version of reality. The treacherous shoals of agonizing self-pity constantly whisper an enticing siren song, and sometimes it's awfully difficult to not allow yourself to venture dangerously close to smashing up against some devastating inner rocks, but you can take command of your emotional rudder and steer clear. In fact you must, in order to give yourself any chance of escaping endless suffering (this goes for both sick and healthy alike).

So much has been written and said about living mindfully, occupying the moment, and staying in the now, that the sentiment has come dangerously close to becoming trite. The effort to stay rooted in the present has also been made to sound almost clinical, like some kind of joyless mental exercise as appealing as attending a psychological fat camp, but the reality of living mindfully entails joyfully soaking up all of the wonder that each moment has to offer, if only we allow ourselves the gift of recognition.

Thoughts of the past have their value, as remembering the good times and learning from the bad can certainly enhance the present, but living too much in the past is a trap of its own, stealing that most precious commodity of all, time, and preventing the creation of new memories to take their place alongside the old. When living with progressive illness, thoughts of the future can be tremendously frightening, and peering forward too often can lead to hopelessness and despair. Whatever a person's circumstance, nobody knows what the next moment may bring. As President Kennedy's limousine made that fateful left turn onto Elm Street in Dallas around noon on a sunny November day, he was the most powerful man in the world, oblivious to the horrors that lay in wait just seconds away.

Despite my piss poor physical state, I still retain enough quality of life to appreciate the hints of magic contained within most moments. For example, at this very instant I can sense the creative gears spinning in my head, and am transported by that feeling. I glance to my left and see one of my favorite vintage fedoras, a perfectly formed deep brown felt hat that's over 50 years old but is still as soft as a kitten, perched atop a tiny Adirondack chair in which sits my little plush replica of Wally the Green Monster, the Boston Red Sox mascot. Silly as it is, that little Wally makes me happy.

In front of me is a wonder that is truly enchanted, my computer, a machine that performs tricks that would leave Houdini insanely jealous. Right now it's transcribing my words as I speak them, and soon enough it will send them to some Fantasia in which people all around the world will be able to read and respond to them. The powers of this electronic wizard leave me humbled and profoundly grateful, having enriched my life in ways that are beyond words.

I look to my right and smile at just how messy my desk is, and then see a photo of one of the true loves of my life, my late great Labrador Retriever Stella, staring up at me with bright sparkling eyes, floppy ears, and a goofy smile on her face, still my faithful companion even though she's no longer here to snooze at my feet.

Outside my window, as I sit perched in the sky 18 floors up, the sounds of the city late at night create a gentle opus, a tapestry of sound comprised of the soft hum of cars and people passing by way down below, regularly punctuated by the staccato rhythms of the labors of pneumatic brakes on faraway buses and garbage trucks, all interrupted by periods of pregnant silence, these elements coming together to comprise a mellow ambience that signals tranquility to the ears of this city boy. My sweatpants and hoodie feel soft and comfy, helping to keep at bay both the emotional and physical chill of the outside world.

The fact of my disability robs this moment of none of its wonder, and if it tried I just wouldn't let it. That may change in a few minutes when I attempt to make my way to the bathroom to get ready for bed, but that moment might as well be decades away, because I am immersed in the now.

All of this does not change the fact that being sick sucks big fat hairy monkey balls, but it does help me keep from being stuck in the suck.

The below video does a much better job than I ever could describing the wonder of every moment. Its visuals and narration are simply sublime. I've been watching it at least once a day for about a week now. I hope you'll be as grateful for it as I am. Please be sure to watch it in high definition and full-screen. When the video starts playing, click on the little gear symbol on the bottom control panel and choose either 720P or 1080P to get high-definition video. For full-screen, click the symbol on the far right of the control panel.

Bits and Pieces: CCSVI, Stem Cells, Big Pharma, Boobs, and A Sad Goodbye

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( For those readers who receive Wheelchair Kamikaze via email, this post contains videos, which can only be viewed on the WK website.)

As you may have noticed, I've changed the look of Wheelchair Kamikaze, more out of necessity than preference. Google's Blogger service, which hosts this blog, has been introducing new blog templates over the last year or so. Along with these new templates, some new functionalities have been added, many of which don't work with the templates originally provided by the Blogger. One of these new functionalities provides an easy way to reply to individual comments left by blog readers, which I thought would be an elegant and useful tool to utilize. Unfortunately, this new function doesn't work with the old blog template that I had been using, so, after holding out for several months, I've finally switched to one of Blogger's new designs. Not so sure that I am all that thrilled with its look and feel, so I'll probably be doing some tinkering over the next several weeks. Feel free to leave your input and or suggestions on the new design in the comments section of this post if you're so inclined.

As for this edition of Bits and Pieces, I've collected some interesting links related to CCSVI, stem cell research, and a very important new law that will finally rip away the veil of secrecy that now shields the financial monkeyshines that go on between pharmaceutical companies and the physicians that they constantly court to get them to prescribe their products.

Included in the mix is a video of Suzanne Somers talking about her boobs, so let me never be accused of not providing culturally redeeming materials…

♦ On the CCSVI front, The International Symposium on Endovascular Therapy was held this past week in Miami, Florida (click here). The symposium featured several presentations on CCSVI, including data from what I believe is the first large-scale study looking at CCSVI treatment outcomes since Dr. Zamboni first published his initial findings. This study (click here), conducted in Sicily, tracked 170 patients who underwent CCSVI angioplasty. Patients were assessed by physicians prior to treatment using the standard scale to measure MS disability (EDSS), and were asked to assess their own quality of life using a 16 item questionnaire. At the three-month point post treatment, it was found that median EDSS scores fell from 4.5 to 4.0, with patients who suffered from less disability benefiting more than patients with more severe disability. Quality of life scores followed a similar pattern, indicating that patients relatively less impacted by the disease reported greater improvements than those experiencing a more advanced disease state. Since the symptoms most often cited as being improved by CCSVI treatment are fatigue, cognitive functioning, and heat intolerance, these findings do make some sense. Patients with less advanced disease (as defined by mobility issues) often find these symptoms to be their most debilitating, whereas more severely disabled patients might not find the relief of the symptoms quite so impactful. The authors of the study note that a longer observation time and a control group are needed to confirm these findings.

♦ An interesting theory out of Australia links chlamydia pneumonia infection with CCSVI (click here). According to this theory, the venous defects and anomalies found in the veins of MS patients might not be congenital (developed in the womb), but instead may be caused by chronic inflammation due to infection with the chlamydia pneumonia bacteria. According to this hypothesis, when inflammation within the vein walls subsides, it may leave behind the webs, septums, and valvular abnormalities now being found by doctors performing CCSVI angioplasty. There has long been a small but adamant group of researchers (led by a research team at Vanderbilt University) and patients who believe that MS is caused by chlamydia pneumonia, and some of these patients have successfully treated their disease using a long-term course of combination antibiotic therapy. More info on the link between MS and CPN can be found that CPNhelp.org (click here).

The proposed link between CPN and CCSVI certainly opens the door to new areas of investigation, and highlights just how much there is left to be learned about CCSVI and its relation to multiple sclerosis. What initially seemed to be a relatively simple hypothesis with a fairly straightforward minimally invasive surgical solution is now slowly being understood to be more complex than we had originally anticipated. The treatment protocol used to alleviate CCSVI is still a work in progress, with the techniques used varying greatly from physician to physician, and the results experienced by patients who undergo the procedure varying widely as well. Unfortunately, very little scientifically valid tracking of patient results has thus far been done, so most of our evidence remains anecdotal. The discovery of the vascular abnormalities associated with MS, now called CCSVI, is, I think, an extremely important one, but it's becoming increasingly clear that CCSVI is a part of a bigger MS puzzle, one that includes not only vascular issues but also genetic predisposition, infectious exposures, and environmental factors as well.

♦ The coming 6-12 months should bring important research data from ongoing CCSVI studies, information that very well could raise as many questions as it answers, as is so often the case with scientific investigation. The upcoming second annual International Society for Neurovascular Disease (ISNVD) meetings will be held in Orlando, Florida from February 18-22nd, and should bring with it a veritable smorgasbord of CCSVI findings (click here). For those readers in the Central Florida area, a patient information program is being held on February 18 at the Orlando Hilton, and registration is now open for the event (click here). Please note, for those not in the Florida area, registration for a live webcast is also available, at the link previously provided.

♦ Here's a chance for you to get involved in CCSVI activism. Activist Karen Golden Oronte has started a letter writing campaign to members of the US Congressional MS Caucus. A list of Congress members to write to, as well as tips on what points to make in your letter, can be found on the always informative CCSVI in MS Facebook page (click here). Compared to coverage in other countries, CCSVI has received very little attention here in the US (strangely so, actually), and this letter writing campaign is a great idea for raising awareness of the issue amongst our elected representatives. So write a letter and use the tools of democracy to make our voices heard. Power to the people, right on!

♦ It seems there has recently been a palpable uptick in the number and pace of advancements being made in the field of stem cell research. One early stage study was recently completed on patients suffering from SPMS, using autologous (taken from the patients themselves) mesenchymal stem cells infused into the patient intravenously (click here). Although the study was small (10 patients) and primarily aimed at assessing the safety of this kind of stem cell treatment, it also assessed the impact of the treatment on some of the visual deficits experienced by the patients involved. After 10 months researchers were able to document several physiological improvements in the treated patients.

♦ An interesting study done on mice demonstrated that exposing older mice with MS like nervous system damage to blood taken from younger mice activated stem cells resident in the central nervous systems of the older mice, resulting in nervous system repair (click here). Although this research is in its earliest stages, this may point the way to therapies that allow the stem cells that are resident in all patients to someday be stimulated to regenerate nervous system damage done by diseases like MS. In early MS, stem cells that are already a part of the nervous system can effectively repair damage done to myelin, but this ability decreases with age and time afflicted with the disease. In this study, exposure to youthful blood increased myelin regeneration in older subjects.

♦ Another group of researchers were for the first time able to convert umbilical cord stem cells into oligodendrocytes, the central nervous system cells that produce myelin (click here). This is a very important advance, as stem cells specifically targeted at central nervous system damage would, in theory, be more effective at repairing this damage than generic stem cells when transplanted into a patient. The use of umbilical cord cells circumvents all of the moral and ethical controversies surrounding the use of embryonic stem cells, and research on these cells, as well as on adult stem cells, offers the greatest promise for rapid deployment into a clinical setting.

♦ As an American male who was a teenager in the 1970s, I can attest to the incredibly powerful effect that the jiggling Suzanne Somers, star of the sitcom Threes Company, had on the raging hormones of red-blooded American males of the era. I'm not too proud to admit that I watched the show not for the deadpan humor of Norman Fell or the comedic timing of John Ritter, but for the substantial endowments of the young Ms. Somers, which the producers of the show put to prodigious use by packing each half-hour with as many scenes of the actress dressed in tube tops or cut off T-shirts as possible. I've been aware for the last several years that Ms. Somers has been battling breast cancer, and was extremely heartened to come across this video clip, in which she explains that she appears to be winning the battle, and that an experimental stem cell treatment helped regrow one of her breasts after breast cancer surgery. Breast cancer is serious business, as is the disfigurement its treatment can leave behind, so this was all very welcomed news. Here's Suzanne Somers, happily explaining how stem cells helped her grow a boob:




♦ Under the United States' new healthcare law, sometimes derisively referred to as Obamacare, pharmaceutical companies will soon be forced to disclose the payments they make to doctors in an attempt to increase the sales of the drugs and medical devices the companies produce (click here). Physicians are routinely paid tens of thousands of dollars in "consulting fees", are treated to all expenses paid "educational symposiums" that are most often held at luxury resorts in exotic locations (where more time is spent on the golf course than in educational conferences), and are treated to expensive dinners, all in the name of "educating" them as to the merits of a particular pharmaceutical product. Analysts have found that at least one quarter of doctors routinely taking cash payments from drug or device makers, and that two thirds accept gifts of food, including lunch for staff members and dinners for themselves.

The New York Times reports that it "has found that doctors who take money from drug makers often practice medicine differently from those who do not and that they are more willing to prescribe drugs in risky and unapproved ways, such as prescribing powerful antipsychotic medicines for children." How nice.

Under the new regulations, a website will be set up on which patients can research exactly how much pharmaceutical largess their physicians have received, and thus be able to make better informed medical decisions for themselves. All I can say is, it's about freaking time…

♦ On a very sad note, one of my favorite recording artists, the incomparable Etta James, has died. Although beset with drug abuse problems for much of her life, Ms. James had an incomparable voice, one that conveyed the deepest of emotions with a simple inflection or a throaty growl. Having spent much of my career working for a major label music company, I can attest to the fact that many of today's most lauded singing stars sound no better than you or I do when warbling in the shower (you would be shocked, believe me), their careers kept aloft by the prodigious use of electronic wizardry and slick production. Not so with Etta James, who built a career in an era when actual talent and the soul of an artist were required to achieve stardom. Sleep well Etta, your powerful essence will live forever in the hearts of many, in the form of your magnificent music.

Related articles

• Hurry up and wait for a CCSVI strategy (macleans.ca)
• Blood Vessel Condition Tied to MS, with Caveats (nlm.nih.gov)
• Risk factors for CCSVI are similar to risk factors for developing MS, UB study shows (eurekalert.org)
• Welcome (thinkccsvi.com)

Shock and Awe

Next week will mark five years since I was forced to "retire" due to my illness. It's been almost 9 years since I first received my MS diagnosis (which is now in question). In both cases, the human mind's peculiar perception of time plays its usual tricks; somehow, I feel simultaneously as if both events happened only yesterday, but also a lifetime ago. I suppose both readings are correct, as my healthy, working days do indeed encompass an almost entirely separate life than the one I'm living now, but in a strictly chronologic sense the time I've spent ill represents a relatively small fraction of my life, and the time spent not working an even smaller fraction still.

Throughout the early days of my illness, life really didn't change much, aside from an uptick in doctors’ visits, some new topics to search intensively for on the Internet, and a general sense of confused anxiety. Upon hearing my bad news, friends and family often commented on my stoicism and bravery, but the reality was that there was not much difference in my day-to-day existence in the days soon after my diagnosis. I still went to work each day, went out to dinner with my wife and friends, attended parties and other social events, and continued along as I always had, even as my symptoms gradually continued to worsen. Like the passengers on the Titanic who played soccer with the chunks of ice deposited on the ship's deck by the iceberg it had collided with moments before, I had little inkling of the shattering events that were looming on the horizon. I daresay that had I been given an unvarnished preview of what was to come, I might not have appeared quite so unflappable.

Those days, and all of the fully healthy ones that preceded them, now often seem like the first acts of a play with a heartrending surprise ending. One might think that nine years after my diagnosis, and five years after my disease had grown bad enough to give the insurance companies reason to label me permanently disabled, I'd have reconciled myself to the situation, and would have somehow grown used to my new normal. But no, the truth is that I wake up every day still shocked to discover myself trapped in my unending predicament, living in my own horrid little episode of The Twilight Zone. Yes, I make the best of it, choosing most days not to succumb to the misery that's always within arm's reach, and finding if not joy then at least contentment in much of the minutia of my day-to-day existence. Nonetheless, the reality of my ever encroaching disability means that there is no reconciling myself to any new normal, as my normal is a constantly moving target, leaving little time to mourn one loss before another shouts for my attention. There's really no good way to spin it, the situation sucks, and I guess I've just gotten good at not getting stuck in the suck.

Multiple Sclerosis (or whatever the hell it is I have) is an insidious maelstrom, a tornado that ravages just about every aspect of existence. As the disease progresses it cleaves a life in two, breaking it along a fault line between sick and healthy, between time spent fully functional and time spent fighting off encroaching dysfunction. The daily life I now lead bears so little resemblance to the one I led when healthy that my existence prior to my illness is practically a standalone piece, complete in and of itself, almost entirely divorced from my present reality. The continuing narrative of life has been shattered, and rather than proceeding from chapter to chapter, I've been forced to start an entirely new volume. I can scrutinize my healthy days as if studying a book on history, picking out my foibles and strengths, pinpointing the interconnected peaks and valleys, and can glean wisdom through such examination, but my actual connection to these events has been severed.

At times I look back with a longing so intense that it seems with just a little more effort I might somehow be transported through the years, to be given the opportunity to undo long-ago events whose impact was decidedly negative and by doing so maybe somehow change my fate, but of course this is impossible. The best I can do is use my past to inform my present, as a teaching tool to guide my thoughts and actions away from those that cause me pain and consternation and towards those that offer comfort and contentment. I suppose that's the best anyone can do, sick or healthy, but the fractured nature of my past and present make that past something more easily examined, as it's much more difficult to objectively assess one's life while still caught in its ongoing currents. Illness has extracted me from those currents, allowing me to examine my old body of work at a distance, almost as if it's that of a deceased loved one, a story with a beginning, middle, and end. In so many ways that old existence is indeed dead, and like a ship slipped beneath the waves, at times the fact that it ever existed at all is only identifiable by the random bits left bobbing on the surface after the plunge.

The inner life is also torn asunder by the shock of ever creeping paralysis, forcing introspection and a redefinition of self. When healthy, we are conditioned from an early age to define ourselves by what we do or what we possess, in many ways discouraged from concentrating for too long on who we are at our core, lest that person be at odds with the whims of society and popular culture. The illness, though, once it becomes serious enough, forces us into sequestration, sets us apart from the teeming masses. I often watch with melancholy bemusement as TV commercial after TV commercial hawks products that are utterly useless to me in my current diminished physical state. Shiny cars, exercise machines, athletic wear, item after item dangled as bait to keep the healthy ever striving, but as relevant to my existence as eggnog would be to an octopus.

I have been surprised to discover that there is a certain liberation that comes with disability. Once the necessity to work is removed from the equation, hours previously devoted to the office or worksite are suddenly placed back fully in your possession. Aside from a very fortunate few, and despite their practiced protestations, many people are wage slaves, working not to fulfill some inner passion but to maintain and advance their status quo. As the old saying goes, nobody ever lay on their deathbed and wished they'd spent more time in the office.

Upon my forced retirement, suddenly having all that time to fill was initially intimidating and unsettling, but soon enough proved to provide much opportunity for self discovery and the pursuit of interests and proclivities that had long lain dormant and might have even been forgotten. I was surprised at how quickly the cares of my working life faded away. There was no longer any need to be concerned with the deadlines, budget projections, project management, or the subtle social ballet of dealing with clients, bosses, and underlings that had been staples on my daily agenda. All of that recovered time and the clearing away of enforced responsibilities allowed for the reemergence of passions that had for many years been stifled. Through the odd combination of their unleashing and the emergent reality of my once dreaded reliance on a mobility device, I've been able to cobble together an acceptable quality of life, though keeping it cobbled together gets more challenging with the passage of time and the progression of disease.

When all is said and done we soldier on, not because of an infusion of incredible bravery or superhuman courage, but simply because there is little else we can do. Each dawn brings with it a choice, to collapse under the weight of the disease or to once again muster up the strength to make it through one more day. To the healthy it may seem that choosing the latter is somehow extraordinary, but when actually faced with that decision, choosing to collapse is decidedly unappealing. Finding the fortitude to make another stand, even if you can't stand, declares that day to be something of a victory. I'll kid you not, my disease continues to progress, alarmingly. Eventually, perhaps, the disease will win out, but I'll be damned if I conspire to play a part in its triumph. If and when the burden becomes too much to bear perhaps there will be a different choice to make, but until that day comes I raise a metaphoric glass in a defiant toast to life…