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...