Bits and Pieces: CCSVI and the FDA – Oy Vey!

Sign leaving Brooklyn on Williamsburg Bridge saying "Leaving Brooklyn: Oy Vey!" (Photo credit: Wikipedia)

I wonder if any Wheelchair Kamikaze readers are unfamiliar with the phrase "oy vey"? Given how shockingly worldwide the readership of this blog is, I have to imagine that at least a few out there in Internet land aren't familiar with the term, so what the heck, I might as well go ahead and define it.

"Oy vey" is a Yiddish expression, whose literal translation is something along the lines of "oh, pain". "Oy" and "vey" are ancient Jewish words that are roughly equivalent to the modern English word "woe". In the course of a typical day, a Jewish person who was raised in largely Jewish community, even an extremely secular Jewish person like me, may utter the phrase about a dozen times. It's kind of a catchall suitable for any situation that even hints of trouble, and can also be used when confronted with something so comically stupid as to be almost tragic, allowing "oy vey" to punctuate situations from humorous to disastrous.

So, if when watching a New York Mets baseball game the shortstop allows the ball to pass between his legs, a softly expressed "oy vey", accompanied by a knowing smirk and a shake of the head, is likely voiced by a significant portion of the viewership. Of course, if the same mistake is made at a crucial, game changing moment, the correct response would be to throw a shoe through the TV set. However, if one were to receive a phone call with the news that Aunt Ida was rushed to the hospital unconscious and foaming at the mouth after eating an especially dense matzoh ball, an appropriate reaction would be a loud "OY VEY", expressed with a dramatic tenor of overwhelming dismay. It's a very handy phrase, suitable for most any catastrophe, terrific or tiny.

Okay, all of this has absolutely nothing to do with multiple sclerosis (except that a diagnosis of multiple sclerosis is definitely a reason for a booming and heartfelt "oy vey", followed by a string of stronger expletives in whatever language the patient chooses), but the info about to be proffered for your consumption will be MS related, at least most of it. Every now and then some non-MS related bright and shiny thing will distract my attention and find its way into these posts, but it's my blog and I'll digress if I want to.

And now, on with the show…

♦ As the title of this post indicates, the US government's FDA (Food and Drug Administration) recently weighed in on CCSVI, in the form of a "Safety Communication" (click here) that detailed the administration's concerns with CCSVI, the treatment procedure used treat it, and the clinical research studying the condition.

According to the FDA, the statement's purpose is to:

"… alert people with MS to the risks of serious injuries and death associated with procedures to treat chronic cerebrospinal venous insufficiency (CCSVI). Furthermore, the benefits of these experimental procedures have not been proven, and their promotion as a treatment for MS may lead people with the disease to make treatment decisions without being aware of the serious risks involved.

This communication is also intended to notify physicians and clinical investigators planning or conducting clinical trials using medical devices to treat CCSVI that they must comply with FDA regulations for investigational devices."

The FDA communication then goes on to summarize what it sees as problems surrounding CCSVI, including questions about the existence of CCSVI as a condition requiring treatment, the inconclusive research currently linking CCSVI to MS, and the uncertainty over whether treating CCSVI relieves any of the symptoms of MS. The statement then details the sometimes serious complications that have rarely resulted from CCSVI venoplasty. It asserts that CCSVI trials constitute "significant risk studies", requiring clinical investigators to file for an "Investigational Device Exemption" (IDE) before undertaking CCSVI trials, because the catheters, balloons, and other equipment used during CCSVI treatment procedures were not designed specifically for such purposes.

At the same time, the paper also states that "The FDA encourages research to evaluate the relationship between CCSVI and MS and to characterize the safety and effectiveness of treatment procedures. Rigorously conducted, properly targeted research can provide a more complete understanding of the existence of CCSVI and any relationship between CCSVI and MS, which will help people with the disease and their clinicians make the best treatment decisions."

The Society of Interventional Radiologists quickly responded with their own statement (click here), which basically acknowledges that there are questions surrounding CCSVI and supports "the urgent formants of high quality clinical research to determine the safety and efficacy of interventional MS therapies…"

Of course, all of this has created quite the hue and cry among online CCSVI advocacy groups, who point out that the FDA statement overstates the risks involved in undergoing CCSVI venoplasty, given that upwards of 25,000 patients have had the procedure, and only a relative few have suffered from serious side effects. Unfortunately, the vast majority of the patients already treated for CCSVI have been inadequately tracked, in my opinion to an egregiously woeful degree, so no one can say with absolute certainty what the rates of complications are (or, for that matter, how beneficial the treatment actually is). Although some studies have come out asserting the relative safety of the CCSVI treatment procedure, most of these studies only looked at patients immediately following treatment, and did not track them in the months and years afterwards. Had a majority of the patients who have undergone CCSVI treatment venoplasty been adequately tracked, many of the questions and controversies we are now faced with might very well have answers, but that horse has already left the barn.

While the FDA warning does not blatantly misstate any of the facts, the emphasis it places on the nebulous nature of the current state of CCSVI knowledge and what appear to be rare adverse events is somewhat troubling. More troubling, though, is the possibility that, through the use of Investigational Device Exemptions, the FDA could curtail legitimate CCSVI research, by denying such exemptions. While I would like to think that such shenanigans will not take place, given the power of special interest lobbying groups on a wide swath of US government functions, one needn't be a conspiracy nut to imagine such a scenario. The influence of big money on the American body politic is rotting our democracy from the inside out, but that's fodder for a different kind of post. Oy vey.

For now I'll take the role of the optimist, and hope that the attention this FDA document has placed on CCSVI will spur "rigorously conducted, properly targeted" research, just as the paper states. Unfortunately, after the flurry of newspaper articles that were written directly after the FDA warning was issued, American news organizations have once again fallen into an eerie silence regarding CCSVI. It's really quite strange.

♦ Lots of news on the MS drug front. The oral MS drug BG 12 (dimethyl fumarate) has continued to shine in phase 3 clinical studies (click here), and has been submitted to the FDA for approval. BG 12 works unlike any current MS drugs, in that it doesn't modulate or suppress the immune system, but rather boosts enzymes that apparently serve as neuroprotective agents and anti-inflammatories, protecting cells from the damages inflicted by MS. This makes it an extremely interesting drug, especially as its safety profile appears to be quite good. Interestingly, one study looking at the effectiveness of BG 12 as compared to other substances that have a similar mechanism of action (click here) found that a dietary supplement, Protandim (click here), was the most effective of the lot. It's important to keep in mind that this study was done on cells in a petri dish (in vitro) rather than in animals or human beings (in vivo). It appears that the amount of the effective dietary supplements contained in Protandim (Curcumin, Milk Thistle, Green Tea Extract, Bacopa, and Ashwagandha) would be too small to have a dramatic effect on human beings, but it certainly would be possible to take these herbal supplements in sufficient quantities to possibly achieve the effects seen in the study. I've consulted the naturopath who works out of my neuro's office about this, and I'm scheduled to have more conversations in this with her regard next week. Her initial reaction was very encouraging, though, and I'll certainly keep everyone posted on how this develops.

Speaking of natural supplements, ever since I was diagnosed it's been claimed that omega-3 oils (fish oils) were beneficial to MS patients. Apparently, this isn't the case, according to a newly released study (click here). Fish oils do have other benefits, however, so there is still reason to supplement your diet with them.

In Tysabri news, researchers have established the risk factors associated with a higher likelihood of developing PML, the deadly brain infection associated with the drug (click here). While that's good news, another study suggests that patients stopping Tysabri therapy face a high risk of suffering an MS relapse in the six months following cessation of the drug (click here). This is problematic, since patients on Tysabri who test positive for the JC virus, which is responsible for PML, are advised to stop Tysabri therapy, leaving them in a damned if you do, more damned if you don't situation. This has led me to coin a new phrase: one hand washes the other and both hands slap the face. Oy vey.

The investigational drug Lemtrada, formally known as Campath, was shown to reverse disability in 29% of patients taking it in a clinical trial (click here). Campath is a very powerful drug that severely suppresses the immune system, and worries about potentially serious side effects have dogged the drug throughout the clinical trial process. Still, other trials have suggested that Lemtrada may suppress disease activity in RRMS patients even five years after patients stop taking the drug (click here), which hints that the drug could be a game changer, but is also indicative of the profound effects that Lemtrada has on the human body. Wouldn't it be nice if researchers spent as much time trying to figure out the root cause of MS as they do on finding new and better ways to suppress the aberrant immune response associated with the disease, which, after all, is really just a symptom of some still unknown underlying pathology? All who agree say, "Hallelujah!" (I figured I'd throw that in to counterbalance all of the oy vey's)

♦ In the stem cell arena, there've been some very promising developments. In a study sponsored by one of my favorite MS nonprofits, The Myelin Repair Foundation, mesenchymal stem cells (MSC's) were found to reverse the damage done to mice suffering from a Murine model of MS (click here). The researchers then went one step further, and tried to figure out exactly how the MSC's were repairing damaged nervous system tissues. They decided to inject the medium in which the MSC's were grown in into the mice, and found that, just like the MSC's themselves, this substance also reversed nervous system damage, indicating that the mesenchymal stem cells were secreting some substance that is neuroregenerative. Further tests to isolate the substance were done, and lo and behold a molecule known as "hepatocyte growth factor" was found which seems to hold the key to the neuroregenerative and immunosuppressive effects of mesenchymal stem cells, opening up the possibility that treatment with this growth factor alone, without the use of the stem cells themselves, might offer tremendous benefit to MS patients. Of course, this research is in its earliest stages, but at this stage in the game, my disease has progressed to the point that if they were looking for human volunteers, I'd gleefully run any competitors over with my wheelchair to get to the front of the line. Oy vey.

♦ I've run across several very interesting studies that might just hint at the ever mysterious process that drives MS. One study, out of the Greek island of Crete, looked at the rise in MS among the islands' female inhabitants. It found that females that lived in towns or had relocated to urban centers at an early age were most likely to suffer from MS (click here). The environmental factors that changed with urbanization included an increase in smoking, the consumption of pasteurized cow milk, alcohol consumption, and the use of contraceptives. In addition, women in an urban environment were more likely to have their first child at a later age. These trends were observed over a 30 year period, suggesting that environmental factors associated with urbanization are associated with an increased risk of developing multiple sclerosis.

A study out of Scotland, which has some of the highest rates of MS in the world, looked at the incidence of MS in three Scottish regions, Aberdeen city, Shetland, and Orkney (click here). It found that the prevalence of MS had risen sharply in the last 30 years, to the point that 1 in 170 women in Orkney suffered from MS, a shockingly high number, and in fact the highest prevalence rate ever recorded worldwide. Prevalence of MS was higher in women than men and 45% of those affected had significant disability (EDSS scores equal to or greater than 6). Interestingly, the least MS prevalence was seen in subjects from the lowest socioeconomic group, hinting that some genetic environmental interaction in the lifestyle of those of the higher socioeconomic groups was contributing to the disease. This brings to mind the hygiene hypothesis (click here), which states that the ultra-hygienic environment enjoyed by those living in technologically advanced Western societies suffer from higher rates of certain maladies because many of the pathogens and parasites that were present during the evolution of the human immune system were taken out of the equation, leading to a whole host of allergies and "autoimmune" diseases.

♦ We'll end on one of my favorite topics, asinine research. An investigator in Australia has made the startling determination that – get this – mobility is key to the quality of life for MS sufferers (click here). This astoundingly astute super genius has observed, over the course of a two-year study of SPMS patients, that as the ability to walk declined, so did a patient's quality of life!!! CAN YOU FREAKING BELIEVE IT? WHO IN THEIR RIGHT MINDS WOULD HAVE EVER THOUGHT??? This superduper brainiac, an intellectual figure no doubt on the order of Galileo, Newton, and Einstein, came to the earthshaking conclusion that "a clinical focus on the treatment of reduced mobility in MS patients might deliver significant benefits in the future to patients with secondary‐progressive multiple sclerosis." HOLY FRACKING SHIT, DOES THIS MEAN THAT IF I COULD RUN, SKIP, WALK HAND-IN-HAND WITH MY WIFE AND USE MY RIGHT ARM, I MIGHT BE A TAD BIT HAPPIER?!?! WELL FUCK ME!!!

And to think, it only took Dr. Shithead two whole years to come up with this theory. Talk about a game changer! Now, this really has the wheels in my head turning. This revolutionary new way of thinking might apply to a wide range of disabilities, not just those associated with mobility. Might – gasp – BLIND PEOPLE be somewhat more contented if they could SEE? And DEAF PEOPLE, could it be that – wait, I'm trembling with excitement so much that I'm having trouble getting this out – could it be that, dare I say it, HEARING might actually bring them some small measure of JOY? MY GOD! HOW COULD THIS INSIGHT HAVE BEEN MISSED ALL THESE MANY YEARS? OH THE HUMANITY! THIS CHANGES EVERYTHING! Now instead of just sitting motionless like a week old turd, the next time I see my neurologist I'll suggest, nay, I'll insist that he get right on finding ways to make me walk, instead of whatever the hell he's been doing all these years. HAVE FAITH, MY BROTHERS AND SISTERS IN DISABILITY, SALVATION IS HERE!!!

All together now: OY VEY!

Given the mindbending nature of the above scientific study, I'll leave you with the following bit of medical advice. It might not work, but at least it'd be a hell of a lot of fun to try…

Stuck in Solitary

When I started this blog, I decided I didn't want it to be a blow-by-blow account of my journey through the medical world, a symptom diary, or a journal of the treatment regimens I've attempted. Instead, I've tried to emphasize the emotional and psychological challenges shared by patients forced to confront a chronic debilitating disease, and also make it a place to report on and attempt to interpret much of the MS research I find myself obsessively compelled to seek out. Occasionally, though, I've deviated from that path when events of enough medical interest crop up as I deal with my disease, and I recently experienced just such a development.

Long time (and even some short time) readers of this blog probably know that I'm something of a mystery patient, as my diagnosis has been up in the air for quite some time. I was first diagnosed with "atypical Primary Progressive Multiple Sclerosis" back in 2004, about a year after my first symptom – a slight limp in my right leg – showed itself. My disease was considered atypical because my MRIs revealed only one significant lesion (a big juicy one at the base of my brainstem, an especially bad place to have one), lumbar punctures showed no O-bands or other CSF abnormalities, my medical history hinted at some kind of systemic autoimmune disorder, and I generally didn't conform to the any of the diagnostic criteria (click here) established for the different forms of MS.

I ditched my first MS neurologist after a year because, despite his being a fine physician, he had the personality of a herring. My second MS neurologist immediately suspected that I might not have multiple sclerosis and had me tested for a host of different diseases that might account for my symptoms, including sarcoidosis, lupus, Hughes syndrome, Lyme disease, and others. When none of these tests came back positive, I was slapped with that "atypical PPMS" label again, and for several years that's where things stood.

Never comfortable with my diagnosis, I pursued other opinions, my efforts including visits to the Johns Hopkins MS Center on two separate occasions. The doctors at Johns Hopkins finally told me that it was indeed quite likely that I did not suffer from MS, primarily because, along with all of the other strange elements of my presentation, my lesion had not changed at all in size or shape since it first been imaged several years earlier (it remains unchanged to this day), nor had it been joined by any others. These fine physicians couldn't quite put a finger on precisely what might be ailing me, though. They suggested I be tested for Sjogren's disease and also that I consult with a mitochondrial disease specialist. I did both and came up with nada.

At about that time I was accepted into a research study being conducted by the National Institutes of Health, the US government's medical research arm, whose primary facility is located in Bethesda, Maryland. The study was designed specifically to identify clinically definite MS patients. During my four visits to the NIH, I was subjected to almost every conceivable diagnostic test, and had enough blood drawn to feed a vampire family of four for at least a month. After all the testing was complete, the NIH agreed with the doctors at Johns Hopkins, saying that although I definitely couldn't be classified as having clinically definite MS, they couldn't come up with a viable alternate diagnosis. So, for the last 18 months or so, I've been stuck in a kind of  never never land as far as my diagnosis goes. My local neurologist, no slouch in his own right, has by and large stuck with the "atypical PPMS" diagnosis, since MS is a diagnosis of exclusion, and we've excluded every other possibility we could think of.

Recently, the NIH has decided that I could very likely be suffering from "Solitary Sclerosis", a condition that was recently described in a paper published by researchers at the Mayo Clinic (click here). The paper details seven patients who presented with progressive disability and only one visible lesion on their MRI images, all at the cervicomedullary junction, precisely where my lesion is located. Although my lesion (I've named it Adolph) has a number of very atypical features, and much of the other strangeness about my case hasn't been resolved, the NIH doctors feel that this newly described derivation of MS is the closest fit for my condition. I'm actually a little bit confused by this, because the folks at the NIH originally presented quite a long list of reasons why they didn't think I had MS, many of which now seem to have been minimized in order to make the Solitary Sclerosis diagnosis fit, but I will concede that this newly identified MS offshoot does cover some of the more glaring anomalies surrounding my condition.

It may seem strange, but I've actually grown kind of comfortable not having a definite diagnosis, since having no diagnosis leaves open the possibility of any conceivable outcome, including total recovery. Solitary Sclerosis doesn't seem to be an especially cheerful diagnosis, as of the seven patients the researchers looked at, one is dead, two are quadriplegics and completely bedridden, and the other four are quite disabled and progressing rather rapidly. None of the SS patients responded positively to any of the standard MS disease modifying drugs, which is typical for patients suffering from the progressive forms of Multiple Sclerosis.

I too haven't had much luck with the many MS therapies I've tried, although I did once get tremendous benefit from a large prolonged dose of IV steroids (which unfortunately later caused me to develop avascular necrosis (click here), an excruciating condition which I wouldn't wish on anybody), and I initially did surprisingly well on IVIG, which would be highly unusual for a patient suffering from a progressive form of MS. Overall, I'm still quite dubious of the SS designation, since I continue to have all kinds of weirdness associated with my disease, and as I've cut my swath through the medical community I've certainly left enough doctors scratching their heads in my wake.

I'm currently pursuing a few different diagnostic possibilities, which I'll report on if any turn out to be worthwhile enough to write about. But, for the time being, I have at least one foot (the gimpy one) planted in the MS camp, as a possible (probable?) Solitary Sclerosis patient. On the bright side, I'm quite likely the first ever Jewish member of the SS, quite fitting for a patient who long ago named his lesion Adolph.

Yes, nothing like some horribly distasteful humor to finish up an otherwise serious blog post…

The Wheat from the Chaff

Taking mental time trips back into my own past, I realize that much of what caused the healthy but neurotic me endless fretting, worrying, and anxiety was in retrospect barely more than a collection of relative trivialities, and that most of the issues that consumed me were really just a massive amount of stupid crap. I wish I could be one of those people who claim that they have no regrets and wouldn't change a thing, but looking back on that all too finite time when I was wonderfully free from the stranglehold of progressing disability, I'm dismayed at the amount of precious time I wasted lovelorn over women who simply weren't worth the tears, or caught up in the artificial drama of career and workplace. As the saying goes, I could kick myself, only now I can't kick myself, and therein lies the problem. All that time is gone forever, lost amidst a misguided sea of malcontent.

Living a life cleaved in two by a terrible disease, along a dividing line between healthy and ill, has given me a chance to examine my healthy existence almost as if it were a foreign object, a big snow globe into which I can peer and pick out the intricate entanglement of decisions and twists of fate that defined the path I followed. With head smacking clarity I can see what really mattered most, the important stuff, and that on which I wasted way too much time and energy, the stupid crap. I suppose a less crass way to express this would be to say that, in retrospect, I can separate the wheat from the chaff, but to hell with that, it all boils down to important stuff and stupid crap.

So what wisdom has my staring into the snow globe of my past bestowed upon me? What exactly is and isn't stupid crap? Well, there's so much stupid crap that it's much easier to say what it isn’t. Stupid crap is not anything that profoundly and directly impacts you or the people you love who love you back. By profoundly and directly I mean the really big stuff, like serious illness, utter financial ruin, and other catastrophic events. That's the important stuff. Lesser hindrances should of course attract your attention, but should not be inflated into artificial crises when in fact they are mere bumps in the road. And when I say the people you love who love you back, I mean the people who love you back as much is you love them.

It's been my experience that folks who reciprocate your deepest affections with a flame dimmer than the one you burn for them will only lead you down a path of disappointment and heartache. In my high school yearbook, each graduating senior chose a quote to be included under their picture, a heady task for a 17-year-old. Out of a graduating class of 865, other than my own, I only remember the quote of one other person, a girl I didn't even know. Under her picture were the words, "Loving someone who doesn't love you is like loving death. And wanting to be with them is like wanting to die." Not exactly the most cheerful words with which to bid bon voyage to your high school years, but true words nonetheless. In case you're curious, my yearbook quote was "Blind acceptance is a sign of stupid fools who stand in line", a lyric lifted from a Sex Pistols song (click here).

Looking back, I realize that most of the trials and tribulations that consumed me turned out to be of relatively little significance, and that while I was preoccupied with overcoming what at the time I chose to see as seemingly insurmountable obstacles, I let a multitude of opportunities for potential happiness pass me by. In truth, most of the stupid crap generally works itself out with time, and there's really not much you can do about it but put yourself in the best position to take advantage of fortuitous opportunities when they arise. I don't mean to say that life should be blithely lived with an idiotic smile plastered on your face, as when unfortunate things occur it's important to feel the emotions associated with them, but once felt, it's important to let such feelings go, and leave yourself open to conduits to greener pastures.

I have a dear friend whose mom was a wonderfully eccentric person, filled with a wanderlust and zest for life despite having endured many hardships and tough breaks along the way. She was always bursting with plans and schemes, convinced that her pot of gold was right around the corner. Pamela was a truly gentle soul, who wished harm to no person. One day I learned she had taken a job as a telephone psychic, and though I knew she was into some New Age spirituality, I'd never known her to claim psychic abilities. I asked her if her new job didn't require her to in some way rip people off, something that was definitely not in her nature, by claiming to be something she was not and, in the process, offering desperate people false hope. She had a very interesting answer. Pam told me that the overwhelming majority of the people who called the psychic hotline had recently suffered a loss, either of a romance or a job. In both cases, she could confidently assure them that in time they would see their problems rectified, and they would eventually find a new lover or place of employment, simply because that's how life works.

Given a level of attractiveness just a few clicks above that of Quasimodo, the jilted lover generally stays as lonely as they want to be. As long as they choose to burn a torch for their lost love they remain alone, my friend's mom explained, often forgoing opportunities to nurture new relationships in order to keep that torch burning. Once they let go of their old relationship, and allowed themselves time to heal, a new relationship would almost surely follow, if that's what they truly desired. The same held true for those who had lost a job; as long as they were reasonably competent, presented themselves well, and diligently looked for work, they would eventually find themselves new and maybe even more fulfilling employment, having learned from their past mistakes. Keep in mind, this was in the 90s, when jobs were abundant. Nowadays, in the wake of the Great Recession, it might be significantly more difficult to find employment, but eventually the vast majority of the unemployed will find themselves back at work. The greater truth that my friend’s mom was trying to convey is that there is a natural ebb and flow to life, as one wave recedes another is making its way onto shore. Unless a tsunami hits, in most cases people keep their heads above the water.

Getting hit with a serious diagnosis forced me to confront my own mortality, and realize in a very tangible way that my time here on earth is finite. Surprisingly, rather than cause me pain and consternation, that knowledge helped me separate the important stuff from the stupid crap, the wheat from the chaff. If you were told the world was ending in five days, on who and what would you choose to spend that precious time? The answer to that question represents the important stuff. Everything else, everything, is stupid crap.

The fact of the matter is we all do have just a limited number of days to live, and I, along with everybody reading this essay, could meet our ultimate fate tomorrow. I passionately hope that's not the case for any of us, but the possibility is real, if remote, whether we want to acknowledge it or not.

I say acknowledge it, and use that knowledge as a lens to focus on who and what is truly meaningful in your life, and then not waste a precious moment on that which may only be of fleeting and insignificant importance. This holds true for all, sick and healthy alike. For your sake and the sake of those who you love and love you back, make every attempt to maximize that which is central to your life, the people and activities that bring you fundamental joy and contentment. Despite the restrictions illness may impose, all but the most grievously stricken can certainly find some good in their existence, and revel in the love they share with those they hold most precious. When all is said and done, nothing else really matters…

Pleased to Meet Me (Redux)

Narcissus (Photo credit: pogobee)

(I've been fighting a bug this past week, and also dealing with some "personal issues" - don't those always sound maddeningly intriguing - so I'm going to put up the first ever "The Best of Wheelchair Kamikaze" post this week. The post was chosen by very exclusive selection committee, namely me. It first appeared on the blog on August 13, 2009, so it's an oldie but a goodie. If you haven't previously read it, I hope you enjoy it. If you have already read it, please make believe you haven't, because as delusions go, self-delusions are one of my favorites. We'll be back next week with our regularly scheduled programming. Thanks for your indulgence.)



MS has wrought an almost incalculable number of extreme changes on my life. Physically, the changes are obvious. Right arm and right leg on the fritz, and I quite often have a wheelchair sprouting from my backside. Changes like that are hard to miss. More difficult to discern are the internal transformations, the changes in mind and spirit.

I'm quite lucky in that MS has not dramatically damaged my cognitive abilities. Many MS patients suffer terribly from the deterioration of their memory and their ability to think. So far, at least, my faculties seem to be relatively intact. My short-term memory isn't what it used to be, but that may be more a function of age than disease. If anything, dealing with multiple sclerosis may have actually heightened my senses of thoughtful perception, and has certainly enlarged my capacity to feel empathy for all of those who struggle to simply make it through the day, sick or not.

I've lately come to realize that MS has not only altered my perception of the world around me, but also of the world within me. It's changed the way I think about myself, in some unexpected ways.

When healthy, I suffered from the common delusion of believing in the limitless possibilities of the future. Although my rational mind understood that my youthful dreams of fame and fortune were not likely to be fulfilled, there was still a part of me that half expected some huge stroke of good luck to dramatically alter the course of my life, to suddenly elevate me into the stratosphere of society. Surely, there was still the chance that I might find myself sitting next to Jay Leno, chatting about my recent Oscar triumph. Nevermind that I hadn't acted in anything since my sixth grade production of "The Sound of Music", and I was much more likely to be directing traffic than a film anytime soon. In America, anything is possible.

Well, MS pretty much doused those flames. These days, my fantasies have less to do with winning Oscars than with taking a stroll around the block, though the chances of either are probably equally astronomic. Still, I find myself dealing with the world in a much more rational way. Rather than feeling resentful that my grand imaginary life was being thwarted by the realities of my everyday existence, I now find myself grateful for the simpler pleasures; lunch with a close friend, a nice day for taking photos, or even just a few hours when the pain in my hips mysteriously subsides. Here's a universal truth, brought to me courtesy of Multiple Sclerosis: The biggest blessing on earth is a quiet night at home spent with people that you love.

MS has stripped away the many trappings of life that had become central to my self identity. High profile job in a "glamour" industry? Gone with the wind... Sexy little sports car? Couldn't even get into one these days... Fashionable clothes and fancy shoes? Ha! Putting on my socks is now a painful exercise in acrobatics, and I could just as easily use buttons and shoelaces as I could split the atom... All of those externals that once so dominated my definition of self are now mere memories, and in their place I've gradually come to know a different me, a me that resembles one that I knew a long time ago, back when I was a child unencumbered by the accouterments of adulthood.

Despite the complexities of being disabled, life in some ways is now a much more simple affair than it was when I was healthy. Absent of the concerns of career and social climbing, I find myself free to pursue my whims and desires in a kind of new found innocence. No longer confined by the boundaries of the workaday world, I can be as eccentric as I want to be.

I've always felt like something of a living anachronism, a man born in the wrong time. Well, if I want to spend my days in 1935, now there's nothing to stop me. So here I sit, listening to The Mills Brothers or The Ink Spots, and I never leave the house without wearing a fedora, preferably at a rakish angle. After all, what sets off a wheelchair in the summer better than a nice Panama hat? I can watch baseball to my hearts content, unencumbered by worries about that big project that is due, or tomorrow's budget meetings. I can spend my days making videos, taking photos, and writing, a situation that I literally used to dream of. Naturally, those dreams never included a wheelchair mounted camera, or writing about my experiences dealing with a dread disease, but, as my father used to tell me, if you want to dance you've got to pay the band.

Of course, there are eternal worries about my illness, but somehow, these are different than the ever-changing concerns I had during my healthy life. These new anxieties are immutable, unbending, and worn like a second skin. Unlike most of the problems I encountered before MS, there is really nothing tangible I can do about my illness, so the all-pervading anxiety it produces, while wearisome, doesn't usually overwhelm the mind. I do my due diligence, fastidiously keeping up with all the latest research, and aggressively pursuing my medical options, but beyond that, there is very little control I can possibly have over what MS is doing to my body on a day to day basis. As hard as it was to come to terms with that reality, the only thing left is to let it be.

I've found this new me to be much more honest with myself, much less likely to put up with dishonesty in others (especially if they're being dishonest with themselves), and completely disinclined to be convinced to do things out of social obligation. I've learned that saying no is not an act of selfishness when it's an act of self-preservation. Often times I simply don't feel well enough to live up to the expectations that some might have of me. I'm sorry to disappoint them, but if catering to others means that I'll spend the next three days in bed, it's just not going to happen. With the love and support of my very caring (and very indulgent) wife, I'm free to pursue interests and inclinations that had long lain dormant simply because life as a working adult had left no time for them.

Make no mistake about it, having MS sucks in every way it possibly can suck, and I will never be one of those patients who claims that "I have MS, but MS doesn't have me". MS most certainly does have me, by the balls (sorry, ladies). But, in a sense, MS has given me the freedom that most human beings lose upon entering grade school. The price for that freedom has been dear, and I would never have willingly paid it, but freedom, whatever the cost, bears with it an inherent sweetness. I've learned that it's okay to savor some of that sweetness, despite the horror and dismay of having progressive MS. The disease has allowed me the opportunity to rediscover myself, and, I must say, it's been an unexpected pleasure to meet me...

Parallel Universes

Brugge Reflections (Photo credit: Wikipedia)

The very personal world that we consider ourselves to be part of is entirely determined by self-definition. Many elements combine to make up our sense of self: past histories and experiences, the friends we choose to surround ourselves with, our mates, life partners and children, the jobs we do, the dwellings we occupy, the material objects we possess. These are just a few of the many components we use to construct our realities.

One of the key elements involved in our self defined realities is health, which can easily be taken for granted when things are going good. Once our physical well-being is delivered a serious blow, though, health suddenly leaps to the forefront, and if the diagnosis is serious enough, it can eclipse the total influence of all the other fundamentals combined. A chronic and debilitating illness can not only jump to the head of the line, but can bend, spindle, and mutilate many of the elements of a world that we had only recently felt so safely a part of.

At the moment of diagnosis, the newly ordained MS patient is blasted out of the reality they once knew and into a sort of parallel universe. None of the externals have yet likely changed much, but inside the patient a Big Bang has taken place, as former assumptions of self identity disintegrate, and new clusters of definition start forming through a haze of questions, shock, and confusion. Frustratingly, the outside world continues on as if nothing has happened, a perpetual motion machine that stops for the problems of no single person. As much as we may desire a timeout, just to catch our breath, none is granted. We must adjust to our new reality on the fly, which only adds to the sense of disorientation.

While we still exist in the world of the healthy, we are no longer truly a part of it, set adrift by the knowledge of a disease that lurks inside us, leaving us living in a world apart. Though a seismic shift has taken place, as long as the disease remains relatively mild the fissure is slight, the changes within at first recognizable only to the patient themselves. Our friends and family, when told of our predicament, offer heartfelt sympathy and measures of comfort, which of course are welcomed and much needed. What they can't offer, though, is a true understanding of the nature of the beast, as that damnable knowledge can only be fathomed by those who have been through the crucible of a body beset by disease .

Those of us unfortunate enough to quickly suffer the progressive disabilities for which MS has earned its cloak of dread soon see the chasm between our new reality and the one we used to occupy ever widen. While the members of the healthy population (sometimes called "Muggles" on some Internet MS sites) perform such amazing feats as effortlessly standing and walking, they cannot know the guttural anguish and inconceivable frustration involved in losing such abilities. Paralysis is one of the most feared conditions known to humanity. For good reason, most shy away from even the thought of it.

Those who love us, and in some cases take care of us, do their best to comprehend, and certainly suffer a brand of anguish and frustration all their own, but they are gratefully not of the world in which we now reside. Although they may empathize with us, only by living inside our skin could those who care ever truly know, and that is a fate I wouldn't wish on those I can't stand, never mind people I like and love.

Although we still occupy a place in their world, to the healthy our reality is an alien environment, beyond the grasp of those who are not residents. This can sometimes lead to seemingly callous remarks, or an apparent ham-fisted disregard to the sensitivities of the situation, but by and large I've found my dear Muggles do a remarkably good job of affectionately helping me navigate a world full of physical and emotional pitfalls that they themselves cannot see but with effort can get some sense of, like a blind person using a stick to navigate their way across Broadway. For this I consider myself lucky, as I know other patients have been left on their own by partners and loved ones who could not reconcile these new imperfect circumstances with their own versions of reality.

Strangers can be a different lot, as most are unfamiliar and uncomfortable with members of the world of the sick, who some may see as somehow diminished, and as reminders that their own complex reality is built on foundations of gossamer. Though most behave with a fair amount of grace, there are those who overcompensate to the alien in their midst, and say or do some incredibly stupid or insensitive things. I generally try to cut them some slack, as I when was in their shoes I was just as capable of committing similar stupidities.

Unlike the friend, lover, caregiver, or stranger who most likely has only ever lived in the land of the healthy, those of us with chronic illness have straddled two worlds. We the sick can remember a time when we were part of the healthy world, even if it now often seems like something of a place of wonder, and sometimes one of intense frustration. I can remember how wonderful it was to be free of disease, to be able to perform now impossible feats without even giving them so much as a fleeting thought. Although we may no longer be of that world, we still live in it, and within it we are constantly confronted with echoes of our own healthy past. I must admit to the occasional feeling of jealousy when watching a couple stroll hand-in-hand, or when my gaze sets upon somebody doing something as mundane as bending down to tie their shoe lace. How glorious to be unencumbered by a rebellious body, and what a rotten twist of fate to be saddled with disease. Still, though we might not be masters of our fate, we can and must be masters of our own reality.

Regardless of the world we live in, we owe it to ourselves to find contentment. Despite physical infirmity, our realities are still shaped by our thoughts, emotions, and perceptions, all of which can be harnessed, as they are a product of us, and not we of them. In each moment lies a kernel of good, and like a gold nugget it can sometimes be found resting right on the surface, but more often lies hidden under a pile of muck, requiring conscious effort be expended to discover it. By concentrating on what we have rather than what we've lost, on those who have shown us kindness rather than those who have been harsh, on this very moment rather than an irretrievable past or an unpredictable future, we can shape a reality that transcends the parallel universes of the healthy and the ill and find a place of self fulfilling satisfaction, where a diminished body needn't dictate a diminished existence.

Bits and Pieces: a Smorgasbord of MS Info

A photograph of part of page 65, Woman's Home Companion, August, 1921, to get the 1921 Underwood logo (Photo credit: Wikipedia)

(To those who receive these posts via e-mail, this post contains several videos, which can only be viewed on the Wheelchair Kamikaze website…)

Well, how often do you get to see the word smorgasbord in print these days? Seems when I was a kid, back in the 70s, you heard the word smorgasbord a lot more. But then again, maybe it was just my family, although I don't know why a working-class Jewish family in Queens would use the word smorgasbord all that much. So, I'll go back to my original premise and suppose that smorgasbord was used in everyday conversation more back in the decade of leisure suits and disco balls, neither of which are seen much these days, either.

Actually, there was a famous commercial back then for Underwood Deviled Ham that featured a child actor who looked like a living Cabbage Patch kid, Mason Reese (click here), saying that the stuff tasted like a "borgasmord", so that might explain my associating the 70s with smorgasbords. On a side note, I once saw a teenage Mason Reese in the Museum of Natural History, and thought he'd have made a better display than patron.

Anyway, for those unfamiliar with the word, a smorgasbord is nothing more than a buffet, Swedish style. I'm not a big fan of buffets, they seem somehow unsanitary and besides, I like being waited on. And now that I'm stuck in a wheelchair and have only one working arm and hand, doing the buffet thing would probably be all kinds of difficult, so I guess I no longer need to be concerned about buffets at all. See, every cloud has a silver lining.

Okay, enough mindless prattle, here's this month's buffet of MS and disability related info, so take what you will and try not to sneeze on the rest, as other people will be reading it after you.

♦ Starting out on the ever popular CCSVI front, several studies presented at this year's annual Society of Interventional Radiology (SIR) conference demonstrated that CCSVI treatment appears to positively benefit a cohort of MS patients (click here). Like almost all studies of this type conducted thus far, these studies were done retrospectively, using patient reported outcomes, which are generally regarded as less accurate than more strict scientific research methodology. In any event, the reports generally fall in line with previously reported data, finding that the symptoms most likely to be beneficially impacted were "quality-of-life issues" such as fatigue, cognitive function, and heat sensitivity. While these tidbits are encouraging, there are more rigorous treatment trials underway, so hopefully we'll have some robust data to chew on sooner rather than later.

On the negative side, a study on mice (click here) who had their jugular veins ligated (read "snipped") found that they did not develop any nervous system dysfunction as a result of the damage to their jugulars. As mice don't ever really develop MS (the most widely used mouse model of MS isn't MS at all, but rather is an allergic reaction induced by researchers), I'm not sure how much weight to put behind these findings. I believe similar research is being done on marmosets, which kind of sucks because marmosets are really cute, but the results of marmoset research would be much more convincing.

The lead singer of the Divinyls, Christina Amphlett, has MS, and recently had CCSVI treatment (click here for video). She says that the treatment definitely benefited her, and I'm sure all of you who enjoyed her signature tune "I Touch Myself" back in the 90s will join me in wishing her well. Now, stop that or you'll go blind…

♦ Turning now to the wide world of MS drugs, it seems that the new oral drug Gilenya has taken it on the chin lately. The drug is now under review in several countries because of safety issues (click here), after a number of deaths due to cardiovascular side effects were suspected. Additionally, a patient on the drug recently developed PML (click here), although that patient had previously been on Tysabri, which somewhat clouds the picture. Since Gilenya is the first oral MS drug, its release was generally greeted warmly in the MS community, but the mechanism of the drug would appear to be somewhat troublesome. Gilenya traps T cells within the lymphatic system, thereby keeping them from patrolling anywhere in the body, which one would assume might have negative repercussions on the body's ability to fight infections and other maladies. As usual, it's a complicated picture, as Gilenya may have neuroprotective properties (click here), and such properties have long been one of the holy grails of MS research. Neuroprotection good, patient deaths bad.

In other drug news, a recent study provides evidence that the CRAB drugs don't do anything to slow MS disease progression, even though they do reduce MS relapses and white matter lesions (click here). The study spanned 10 years and looked at 262 patients. Another study showed that cannaboids (the good stuff in marijuana) inhibited disease progression in mice (click here), but, as I stated earlier, the mouse model of MS is really pretty terrible. Still, the case for medical marijuana only seems to be getting stronger, so smoke 'em if you got 'em…

♦ The Multiple Sclerosis Association of America (MSAA) does some terrific work, and has programs designed to help MS patients in financial need acquire safety and mobility equipment at little or no charge (click here). They have a similar program involving the distribution of cooling equipment (click here), which can be a godsend during the hot summer months for those of us bedeviled by heat sensitivity. If you are a US citizen struggling financially during these tough economic times, please don't be shy about taking advantage of these truly wonderful programs.

♦ Movement on Wheels (click here) is a social networking site designed specifically for wheelchair users. The site is very new, and doesn't yet have many members, but I think the idea is a great one and I wish Movement on Wheels much success. If you are a wheelchair or scooter user, I'd encourage you to check out the site and help it become a thriving community.

♦ For those interested in learning about buying wheelchair accessible vans, this site has a lot of valuable information (click here). I'm not endorsing the company that runs the site, but they have put together an impressive website chock-full of really good info, and knowledge is power.

♦ A company in Italy, Genny Mobility (click here), is marketing a wheelchair made from converted Segways. The chairs are not yet available in the US, and the website is strictly an Italian, but check out the videos to see just how cool this little beast is. Looks like riding around in one would be a hell of a lot of fun, and I appreciate the con mucho gusto attitude that the inventor/marketer displays in the videos. Here's a video of the inventor riding around with his very adorable dog, and please forgive me for subjecting you to "Who Let the Dogs Out", a tune that the world could have very easily lived without:



♦ In my never-ending quest to shine a spotlight on assholes, here are a couple of pieces about jackasses ripping off the disabled. The first (click here) involves a chap in England who seems to specialize in robbing the vulnerable, and the second (click here) details the theft of computers from a Georgia office of the NMSS. To the miscreants involved in these incidents, I wish a pox on you and all your ancestors.

Just to make up for the "Who Let the Dogs Out" thing up above, I'll leave you with a much more pleasurable listening experience. Although I don't understand a word of French (okay, maybe I understand a few words) I listen to a lot of French music. I got started on Jacques Brel (a Belgian, actually) a few years ago, and since then a wide variety of chanteurs and chanteuses have been finding their way into my ear holes. Here's one of my more recent discoveries, Emily Loizeau. The song even has a bit of English in it, expressing a sentiment I think we can all identify with:

Related articles

• Gilenya in Ireland... or not? (willeke73.wordpress.com)
• Safety of MS pill Gilenya reviewed after deaths (cbc.ca)
• The medical politics blocking CCSVI trials (macleans.ca)

Some New Photos, Some Shot with a New Toy

The camera in the iPhone 4S (Photo credit: Wikipedia)

It's been a while since I added new photos to the gallery (featured in the sidebar on the left), so here's another batch. The first seven were shot with my usual wheelchair mounted camera rig (click here for info). I recently upgraded my camera to a Panasonic Lumix GH2 (click here), for which I am quickly developing an affection, but that's not the new toy I'm talking about in the title of this post…

My newest gadget is (drumroll please)… an iPhone! The remaining 11 photos posted down below were all taken with my new iPhone 4S, a device I resisted buying for several years because I just didn't want to join the cult of Apple. I know, I know, people love Apple gizmos and will line up for days to get the latest and greatest (I have an Apple Store on the corner of my block), but I've always found the whole Apple thing to be more than a little annoying. Maybe it's just the contrarian in me, but I generally don't like "smug", and Apple as a social phenomenon is nothing if not smug. Yes, their design studios turn out physically beautiful products, and they did reinvent the way we interact with our computers (remember the days of Microsoft DOS, blech), revolutionize the way we purchase and listen to music (and in the process destroy the monolithic music industry, which, even though it employed me, might not be a bad thing) and even change the whole concept of what a phone should be, but I always resisted the Apple siren song because of the smugfest that enveloped it.

What finally won me over was the inclusion of a relatively high-quality eight megapixel camera in the newest iPhone, and all the fun photography apps designed for it that I kept reading about on the various photo websites I like to poke around in. The Siri feature, which lets you talk to the phone and access many of its functions by voice command was also a selling point, as it’s a very disability friendly option, but the big draw for me was the photo potential.

Despite my initial reticence, I have to admit that the iPhone is a pretty neat device. I have gone a little nuts with the photo apps, but hey, at the cost of one or two bucks each I can afford to splurge, and many of them do some impressive tricks. Though I've always used Photoshop to process my photos, I generally try not to tinker with them too much, preferring to stick with traditional in camera photography and the digital version of old-school darkroom techniques. With the iPhone and all of its many photo apps, though, I just can't help myself but mess around with the photos in a zillion different ways, as you can probably see from the examples below. It's easy to overdo it with some of the effects because the apps make it so terribly easy and some self-control is definitely required, but there's something about making pictures with the iPhone that is tremendously addictive. The quality of the photos it produces is nowhere near that of a dedicated high-end interchangeable lens digital camera, but for a phone - zowie!

An unexpected benefit that I really didn't anticipate before getting the iPhone is that it allows me to handhold the camera, which is very liberating after years of taking photos with a camera firmly mounted to the arm of my wheelchair. The iPhone camera can be operated with one hand (which is a good thing for someone who only has one gimpy but for the time being still working hand), and the photos I take with it are much more like my photos of old, prior to MS (or whatever the hell I have) forcing a very disciplined style of shooting on me. Before MS stole the use of my right arm, I used lots of toy and/or antique cameras, because I loved the dreamy, seemingly haphazard, and often surreal images they captured. Well, the combination of the small footprint of the iPhone and its many available photo apps has allowed me to digitally re-create what I used to do organically. Naturally, I'd give my right arm (snicker) to be able to go back to doing things as I did in my healthy days, but, as they say, any port in a storm…

Okay, enough with my endless blatherings. Presented for your perusal are the following 18 photos (click thumbnail for larger image), on which I'd love to get your feedback. Feel free to critique at will, as I'd like to know which ones you hate as well as which you like, so please don't be shy about leaving your impressions in the comments section at the bottom of the post.

Oh, I almost forgot, since a bunch of readers have inquired if and where they might buy some of my photos, I'm looking into setting up a website that would allow folks to do so. I don't want to generate any income from selling them, but I would like to further MS research, so any profits realized would be donated to various MS charities. More details to follow, as they become available…



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Related articles

• New patent sheds light on Apple's camera tech (images) (news.cnet.com)
• Steve Jobs wanted to reinvent iPhone photography, says book (news.cnet.com)
• Should I break up with my iPhone for Nokia's Lumia 900? (news.cnet.com)

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).